THE TRANSVERSETHE TRANSVERSE MYELITIS MYELITIS ASSOCIATION ASSOCIATION THE TRANSVERSE MYELITIS ASSOCIATION NEWSLETTER ...advocating for those with acute disseminated encephalomyelitis, Winter 2014 neuromyelitis optica, optic neuritis and transverse myelitis

PAGE 1 WINTER 2014 NEWSLETTER Recnizing

YEARS OF SERVICE

THE TRANSVERSE MYELITIS ASSOCIATION

© The Transverse Myelitis Association Journals and Newsletters are published by The Transverse Myelitis Association, Powell, Ohio. Copyright 2014 by The Transverse Myelitis Association. All rights reserved. No part of this publication may be reproduced in any form or by any electronic or mechanical means without permission in writing from the publisher. We ask that other publications contact us for permission to reprint any article from The Transverse Myelitis Association Journals and Newsletters. INDEX

04 THE EDITOR’S COLUMN / 10 HIGHLIGHTS FROM THE 2013 ANNUAL REPORT OF THE JOHNS HOPKINS TRANSVERSE MYELITIS CENTER / 12 TMA ASK THE EXPERT PODCAST SERIES / 13 AQUAPORIN 4 IGG SEROSTATUS AND OUTCOME IN RECURRENT LONGITUDINALLY EXTENSIVE TRANSVERSE MYELITIS / 14 JAMES T. LUBIN FELLOWSHIP UPDATE / 16 FIRST TMA GOLF OUTING / 17 HELP INCREASE OUR PHYSICIAN NETWORK! / 18 A YOUNG GIRL’S DETERMINATION TO HELP CHILDREN ATTEND THE TMA FAMILY CAMP / 19 AMERICAN PARALYMPIC MEDALIST DR. ANJALI FORBER-PRATT JOINS THE TMA BOARD OF DIRECTORS / 20 OUR COMMUNITY’S FEEDBACK ON CLINICAL TRIALS / 22 HOPE / 23 2013 RNDS PRESENTATION VIDEOS ARE NOW ONLINE! / 24 IN THEIR OWN WORDS - IN THE MIDDLE / 26 REBECCA WHITNEY JOINS THE TMA STAFF / 28 DEBBIE CAPEN RECEIVES 2014 TMA DISTINGUISHED SERVICE AWARD / 30 JOIN THE TMA’S WALK-RUN-N ROLL CAMPAIGN / 32 SUPPORT GROUP IN DALLAS-FORT WORTH AREA, TX / 33 IN LOVING MEMORY OF JOAN FINK / 34 THANK YOU TO OUR SUPPORTERS! / THE EDITOR’S COLUMN Sandy Siegel, PhD

he birthdays and anniversaries that end in zeroes and fives are Pauline and I don’t ruminate about them generally given more significance in our culture and many aloud. Sometimes they are difficult enough to cultures because they are landmarks and evoke more self- just think about. Pre 1994, one of Pauline’s and Treflection. The year 2014 is certainly that for Pauline and me my favorite activities was taking walks; we did a lot and it is so for The Transverse Myelitis Association. In July of of hiking. And more often than not, we would hold this year, Pauline and I will be doing some serious ruminating hands. Today, Pauline walks very short distances using about this being 20 years since she had the inflammatory two canes or a walker with wheels (Pauline calls this attack in her spinal cord, and just how much that event device her wheelie walker) and anything longer than has changed our lives. We will also be reflecting on the that, she is in her wheelchair or scooter. None of those existence of The Transverse Myelitis Association for the modes of locomotion facilitate any kind of handholding. past 20 years, the service this organization has provided I think about this loss all the time, because it reflects a to our members for the past two decades, and also greater loss of intimacy that we have experienced over about how the TMA has changed our lives. For Pauline the years, and there are just so many different factors that and for me, the story of Pauline’s getting TM and the contribute to this problem, from nerve pain to fatigue. It spinal cord damage she experienced is the same story is difficult and the complexity of these issues boggles the as the history and development of the TMA. Both are mind. incredibly personal stories. Both of these monumental events will be recognized and they will both evoke Another example of one of the small things. Pauline intense reflection. There won’t be any celebrations. and I have been blessed with three beautiful and brilliant grandsons. And we have a granddaughter on the way in May. That Pauline got TM and that she suffered permanent Pauline and I just love being grandparents and we love the damage to her spinal cord impacts everything about time we get to spend with Maceo, Leo and Van. If Pauline our lives, large and small. How we think about our hadn’t experienced TM, she would have spent the past two financial resources and insurance, how we think about years carrying those beautiful babies all over the place and and plan for health care, how we make decisions about she would have been dancing with them. None of those the vehicles we’re going to purchase, what we do for activities were possible. Pauline can barely stand let alone try entertainment and vacations. The large things can be to hold the babies and try to walk with them. You can see the very large and very expensive. Pauline and I put a lot sadness on her face when she is with the kids … I know what of time and effort into deciding how we were going to she’s thinking about. We get to see Leo a lot as they live create a living space for us that was totally accessible very close to us. When we have the opportunity to care for for Pauline. After weighing all of the options, we landed Leo and it is bedtime, I make sure that Pauline is the one on remodeling our current home. We moved all of our holding Leo on her lap and reading to him before bedtime. living space to the first floor of a two-story house. I can I get my share of holding Leo. This is prime cuddling time summarize the extent of this endeavor by telling you for Leo and I want Pauline to have every opportunity to that we transformed our existing kitchen into a master be with him in this way. Not being able to care for the bedroom, our living room into a study and walk/roll in babies alone has been a horrible loss for Pauline. closet, and a family room into a laundry room and pantry. There isn’t a single step or stairway in Pauline’s home, the Thus, one might conclude that there are no small entrances to our home are ramped, and Pauline has a totally things. The losses from TM are all significant and accessible kitchen and bathroom… CHA CHING! they just totally suck. The 20 years with TM will not be a cause for celebration of any kind by Pauline And there are a gazillion small things. These small things have and myself. become a part of our everyday lives, and more often than not,

PAGE 4 WINTER 2014 NEWSLETTER The Transverse Myelitis Association has also been a very Running the TMA is and has always been a very personal personal experience for Pauline and me. Between 1994, experience for me. Our home telephone has been ringing when we started working on the Association with the for almost 20 years, and the people who are calling are all Gilmurs, until January 1997, the TMA grew to a whopping seeking help and guidance. I listen to the most horrible, 187 members. We had spoken to many of these people troubling, confused, anxious and challenging stories almost and we were getting to know some of them fairly well. every day of the week. And now that we have this email thing, We gathered in Columbus in 1997 for a meeting with the we get similar stories via email. And Facebook and other National Organization of Rare Disorders and the rare social media only intensify and magnify the conversations. disease organization, the International Fibrodysplasia For almost everyone, getting TM or ADEM or NMO is Ossificans Progressiva Association. We also had the the worst thing that has happened to them in their lives. opportunity to spend time with Dr. Chuck Levy who And if I’m talking to a parent of an infant or a young child, sponsored the meeting, and with Dr. Joanne Lynn. Both we’re talking about the worst thing that is going to happen physicians became the first two doctors on our medical to an entire family. For years, I would cry after hanging up advisory board. The people from the TMA who attended the telephone. With some of these parents, I’ve started that meeting were Deanne, Debbie, Paula, Drema, to cry before I hang up the phone. I’ve met people over Heather, Maureen, Gunny, Phil, Pauline and myself. the years who have gone through the most horrendous I don’t have to check notes to remember who we spent experiences. Often times, I’ll look at them, hold them, and time with that weekend … it was like being with family. cry uncontrollably. And then I apologize for falling apart at Sadly, Phil passed away last year. His memory should be a the seams and freaking the crap out of them. It is personal. blessing. We gathered for our first exclusive meeting of the It is the only way I know how to deal with all of this. It is sad TMA in 1999. There were about 100 people who attended and it is incredibly painful. Thinking about a 6 month old that meeting. I remember almost all of them, and we have who has become quadriplegic and ventilator dependent … stayed in touch with most of them. Many of these people and is still in this same situation 9 years down the line is have become our closest friends. just a challenge to think about. Thinking about Jim being

WINTER 2014 NEWSLETTER PAGE 5 THE TRANSVERSE MYELITIS ASSOCIATION THE TRANSVERSE MYELITIS ASSOCIATION

quadriplegic and ventilator dependent for more than 20 think about these differences every day. Being immersed some years is difficult for me to wrap my head around. It in the sadness machine doesn’t foster lots of opportunities makes me so very sad to think about all of what people for patting oneself on the back. But as we move into two have lost because of transverse myelitis… and ADEM and decades of this work, I am in a pretty good position to NMO. evaluate our progress, and my measure is as personal as the reasons I remain involved in this work for almost 20 And the losses include having some very close friends pass years. I know what this experience was like for me and away. Some of the secondary complications from these Pauline when she got TM almost 20 years ago. And I know disorders can be very serious. We’ve lost too many friends. what that experience is going to be like for the person who And we’ve lost some really young children, including has this attack in their spinal cord this afternoon. The odds infants. The sadness from this work is inescapable. And I are better for them that they’re going to get diagnosed don’t know how to offer help and not get involved in some more quickly and that they are going to receive aggressive way emotionally. It has most definitely taken a toll on me. acute therapy. The odds need to be even better than they currently are, but as compared to 20 years ago and before I have been surrounded by this mayhem every day of my we had TM and NMO Centers, and numerous education life for going on 20 years. The desperation, the frustration, programs, and a physician network and research and the bitterness and anger, the resignation – there are publications in the medical literature, this person has the people who do choose to give up – and I’m not confused opportunity for a better outcome. And they can and likely as to why. There are people outside of the US who don’t will eventually find the TMA, join the Association, spend have access to any medical care. There are people in the many hours on our web site, connect with people through US who do not have access to any medical care. Can you our support groups and/or social media, and they might imagine being paralyzed, in extreme pain, no bowel and give me a call or attend one of our symposia or family bladder function, horrible spasticity and not having access camps. Twenty years ago, Pauline just had me, and I didn’t to decent, or even ANY medical care? I have to think have a clue and was totally overwhelmed by ALL of it. about it every day because that terrible reality shows up in my inbox and voice mail regularly. One of the most profound measures of our progress is that Dr. Allen DeSena will become a TM, ADEM and NMO In my next life, I’m going to volunteer to read novels while specialist this year and will open a new center in a new city. lying in a hammock under a tree near a beach while eating a People who did not have access to a specialist will, literally chopped liver with egg sandwich on rye mit seeds (because overnight, have access to the best medical care available in my next life, I won’t have to be concerned about my for these rare disorders. And not only will all of these people cholesterol). have access to the best medical care, our community of researchers will have a new center for research. As these I likely understand as well as anyone just how much work are such rare disorders, almost every research project we we have in front of us. In the way of research, we have so are involved in requires multi centered studies, because no much that needs to be done to develop even the most one center attracts enough patients to have good numbers basic understanding of TM and ADEM. NMO is better for research. This is the case for almost every type of understood, but there remains much to be learned about study. Dr. DeSena will create another important center NMO as well. From acute therapies to better symptom for our clinical care and research network. So, this is what treatment to more effective rehabilitation programs to totally blows my mind. Dr. Kerr trained Dr. Greenberg who restorative therapies, there is a ton of work that needs to trained Dr. DeSena… and so on. There is nothing more be done. I speak to people every day who don’t understand important for us to do than grow this network. It will create nearly enough about what happened to them or about the greatest impact on the quality of care that is being what medicine can do for them. We have so much to do to offered to our members and the amount of research that better educate our community and to also better educate we can accomplish. My wish would be that we could have physicians. I speak to people every day who are not getting more than one doctor receive a James T. Lubin Fellowship good medical care – at every stage, from the acute attack every year. And we could do that, if we had the money to through long term symptom management to disease fund it. management for people who have recurrent variants of these disorders. We have so much work to do to grow And it is a fact. The difference between how much research the discipline so that people have better access to good is getting done and the amount of research we need is clinicians. And these are the issues we work on every day. money. If we had the money, we would be getting more We know we’ve made a difference in people’s lives. I don’t critical research done. If we had the resources, we would

PAGE 6 WINTER 2014 NEWSLETTER THE TRANSVERSE MYELITIS ASSOCIATION THE TRANSVERSE MYELITIS ASSOCIATION

fund the training of more doctors to become specialists in I’ve been doing this work long enough to realize that the ADEM, NMO, ON and TM. only way we could possibly ensure the long term viability and success of our organization was to professionalize our When I first got involved in doing this work, I avoided dealing staff. This is something that Jim, Debbie and I discussed with the money part of this thing like the plague. The whole many times through the years, and while we knew this was asking for money part of this gig just made me feel yucky. an important goal, we really didn’t know how we were going If my children were selling something for a fundraiser of to get there. Well, we’re there. If you read my editor’s some sort, I preferred buying all of what was being sold columns and articles about Johns Hopkins or you visited before I went about asking family, friends and neighbors to the TM Center while Dr. Kerr was practicing, or you read get involved. Twenty years of my involvement in this work the medical literature about TM, then you know all about has totally changed me. I’m evolving at an alarming rate. Chitra Krishnan. That we have Chitra for our executive I know the work that needs to get done, and I also know director might be my most dramatic and meaningful that none of this work is going to happen unless and until accomplishment over the past 20 years. Why … because we raise sufficient funds on a regular basis to support the Chitra guarantees that the TMA will have a bright future… work. I can’t provide medical care to anyone, because I’m which means that there should be great hope in our a cultural anthropologist. I can’t perform medical research community; and Chitra guarantees that the TMA will or train physicians, because I’m retired, I live on a fixed have a future. She has developed our relationship with income, and I’m also losing neurons at the same alarming Roberta who does incredible work for the TMA and she is rate that I’m evolving. What I can do is raise money so that also growing the Association. Our Board of Directors has the people who are better equipped to do so can get this become more dynamic, more engaged and more dedicated critically important work done. Thus, for the duration, I to helping the TMA move forward to make a meaningful am going to be all about the money. Fact is … we all need difference in our community. When I think about how we to be all about the money. And frankly it is naïve to think got from there to here, it really does sort of boggle my otherwise. mind. What a journey.

We want to recognize that this 20th year of the TMA is an Twenty years is a long time. Transverse myelitis and now amazing accomplishment. I think the best way to do this also ADEM, NMO and ON, have become a part of is recognize that what we have done in the past 20 years Pauline’s and my life in almost every conceivable way. Our has created the foundation for us to begin to really make recent vacation to Tucson encapsulates just how this has the difference for the wonderful people in our community. become the case. We had never been to Arizona and we I am asking you to help me; I am imploring you to help me thought that a vacation to the desert would be a great way raise the money that will accelerate and intensify research to spend the days between Christmas and New Year’s. We on all of these rare disorders and also grow our discipline spent our first day in Tucson with our dear friends, Barbara so that more research is possible and more people have and Kenney. We went to the desert museum, had a lovely access to good clinical care. I have two ideas to help make lunch at the museum and walked around in the desert as this happen while recognizing our 20 years of service. much as we could. The Sonora Desert just isn’t all that accessible (what’s with that?), and especially with the We are a relatively small group of people who are connected small casters on Pauline’s chair. Barbara got TM in 2001, by these rare neuro-immune disorders. Acting alone, it is she’s our support group leader in Tucson and she serves on a challenge to raise the money needed to accomplish all of the TMA Board of Directors. We spent the next day with our goals. I am asking each of you to approach your family, the Ziemba family. We visited the Saguaro National Park friends, neighbors and co-workers … these are the people and then had lunch at an awesome Mexican restaurant. I who best understand how having ADEM or NMO or met Lauri about ten years ago when a loved one got a TM ON or TM has impacted your lives and your family’s lives. diagnosis. We had stayed in touch with each other over Find 20 of these people who will make a commitment to the years and became good friends. We met Lauri for the making a donation to the TMA and make our organization first time on this vacation … after writing each other and and YOUR CAUSE a part of their regular generous giving. speaking to each other on the phone for the past decade. Later that day, per Curtis’ great instructions, Pauline and I am also asking you to help us recognize this special 20 I drove up through the Santa Catalina Mountains. What year anniversary of the TMA by making a commitment to a spectacular ride. We stopped toward the bottom of the make a monthly donation of $20 each month during the mountains to enjoy the sunset over the desert below us. year. If you can afford $200 a month, that would get us For our last day in Tucson, we went to Sabino Canyon. The even closer to helping us achieve our/your important goals. park has a wheelchair accessible tram that took Pauline and

WINTER 2014 NEWSLETTER PAGE 7 me almost 4 miles up to the top of the canyon. We got out husband, Captain and Commander, Mark Kelly. near the top and then spent the entire day getting down to the bottom of the canyon. And to be clear, down really And of course we talked a lot about our service dog meant up and down and up and down. It was just the most experiences. The Giffords were in the seats behind us amazing day you can imagine. Pauline and I weren’t able to during the flight and Nelson’s head was planted between hold hands on this hike … I was too busy either holding back Pauline’s feet for most of the trip… which only made her the chair to keep us from crashing or pushing Pauline and miss Kazu that much more. Kazu spent this time with our the chair up the next hill … holding hands was just not in the son, David, who we refer to as Kazu’s favorite toy. We cards. But we spent the day out hiking in nature … the most thought we would spare Kazu two days of flying across the spectacular nature. I love taking photographs, and I’m sure country and three days in the desert … after all, he’s a big I took more than 200 photographs on our way down the black dog. canyon. And I know that Pauline loved this experience as much as I did. Even on vacation … TM and the TMA are with us 24/7.

We got to our gate early at the airport because we need TM has most definitely changed our lives in almost every to give the attendants time to tag Pauline’s chair so that way. Some of these changes have been good. Our best it can be stowed during the flight. As we rolled up to our friends are people we’ve met over the past 20 years from gate, I immediately recognized Gabby Giffords, also sitting our community. We’ve had the most amazing experiences in a chair near the gate … and for the same purpose. She one could imagine, all of which only happened because was with her husband, Mark Kelly, an aid, and her beautiful of Pauline getting TM; and that includes Pauline’s being service dog, Nelson. I immediately recognized her, in matched with Kazu. And Pauline and I have come to large part, because I thought about her the whole time we appreciate and think about our lives in ways that would were in Tucson. Because I am me, I introduced myself to never have occurred, if we hadn’t gone through her getting Gabby and Mark and then introduced Pauline. I had the TM and our doing the work of the TMA. opportunity to say to Congresswoman Giffords all of the things that I thought about her situation over the past few And to be clear … none of this good has been good enough years. There’s no way she could have possibly known that I that Pauline and I couldn’t have lived our lives without it. If I totally understood how difficult her rehabilitation has been had the ability to change all of this, I would trade these past from my experiences with Pauline … and many others … 20 years for a healthy Pauline without giving it a second fighting to recover motor function. And there’s no way she thought. I would have been perfectly content not to have could have known my understanding of the complexities of any of you for friends and spend my good cause energy her brain trauma … from the many many hours I’ve spent on the Special Olympics. But we’re here. And we love so talking to and visiting with people who have gone through many of you and we care for all of you. You have become ADEM. But she had a sense as my eyes likely communicated like family for me and Pauline. the empathy, compassion and understanding that I was feeling. I’m sure my expression conveyed more than my Please take care of yourselves and each other… words … and she took my hands in her left hand as I spoke And please do all that you can to help me help you! to her. Gabby is one incredibly courageous, inspiring, and Sandy remarkable person. Pauline and I felt really humbled and honored to meet her and her amazing, in his own right,

PAGE 8 PAGE 9 HIGHLIGHTS FROM THE 2013 ANNUAL REPORT OF JOHNS HOPKINS TRANSVERSE MYELITIS CENTER

he JHTMC was established in 1999 as the first clinical center in the world to facilitate the diagnosis and treatment of patients with transverse myelitis (TM). The JHTMC is part of the Division of Neuroimmunology Tand Neuroinfectious Disorders, Department of Neurology at Johns Hopkins Hospital, and is supported in part by Johns Hopkins Project RESTORE. Four years ago, under the leadership of Dr. Carlos Pardo, the JHTMC was revamped with the support of an outstanding team of neurologists and consulting physicians with expertise in neuropsychiatry, neuro-rehabilitation, neuroradiology, urology, neuro-opthalmology as well as physical therapists and occupational therapists. The Center works with Kennedy Krieger Institute (KKI) International Center for Spinal Cord Injury and the International Neurorehabilitation Institute (INI) who have a focused interest in TM.

2013 ACCOMPLISHMENTS OF THE CENTER ARE on transverse myelitis and other neuro-immunologic HIGHLIGHTED BELOW! disorders at the University of Antioquia Hospital, the first of its kind in that region of South America. • The first-everJHTMC Regional Transverse Myelitis Clinical Care Symposium was held on June 15th, 2013 • A close collaboration with colleagues at Johns Hopkins at the Johns Hopkins Hospital with overwhelming Interventional Neuroradiology led by Dr. Philippe success! Thanks to the support of the Bart McLean Fund Gailloud has allowed a refinement in the diagnosis for Neuroimmunology Research and in collaboration and treatment of patients with vascular myelopathies with Project RESTORE and The Transverse Myelitis that are often misdiagnosed as “transverse myelitis”. Association (TMA), over 90 participants, patients Many patients who failed previous anti-inflammatory with TM, myelopathies, or NMO and their family treatments have been able to recover and return to members, all of whom are impacted by these disorders their normal activities of life. on a day-to-day basis were in attendance for this one- day symposium. The event was such a success that it • In 2013, the Center received over 250 referrals from was decided that a second symposium will be held in which 208 patients were seen in the outpatient clinic. June 2014. All of the talks can be viewed at http:// These new patients came from 44 different states myelitis.org/portfolio-view/2013-regionaltm-clinical- across the country, as well as Washington DC and care-symposium. Puerto Rico (see Figure 1), and internationally from such countries including Bermuda, British Virgin • As part of the Center’s educational efforts to Islands, Canada, China, Colombia, France, Greece, train physicians on issues related to rare neuro- Ireland, Italy, Jordan, Kuwait, Mexico, Peru, Saudi immunologic disorders including transverse myelitis, Arabia, Spain, South Africa, United Arab Emirates, the Center facilitated the training of Dr. Jorge and United Kingdom. Jimenez Arango, a neurologist from Colombia (South America) who completed a one-year fellowship at the • The JHTMC consultation service, which is provided at Division of Neuroimmunology at Johns Hopkins. Dr. no cost, continues to be available for those patients Jimenez Arango will establish a clinic that will focus unable to get to the TM Center or travel to Baltimore.

PAGE 10 WINTER 2014 NEWSLETTER FIGURE 1. Origins of Patient Referral by State FIGURE 2. Origins of Urgent Remote Consultations (2010-2013) (2010-2013)

To date, approximately 350 such consultations have investigating brainstem involvement in NMO. been offered, either via telephone or by e-mail. These These efforts have yielded recent publications, as patients and practitioners contacted the JHTMC from listed: http://archneur.jamanetwork.com/article. 38 different states around the country (see Figure 2) aspx?articleid=1190816 and http://msj.sagepub.com/ and from 25 countries in the world. content/early/2013/10/05/1352458513507822.full. • • The Neuromyelitis Optica Clinic under the leadership of Dr. Michael Levy and Maureen Mealy currently • Studies of retinal and macular pathology have been manages nearly 200 patients, many of whom are performed in patients with TM, NMO, and MS, actively involved in research endeavors to provide a and. Dr. Peter Calabresi and other members of the better understanding of the disease, from participating JHTMC have been using techniques such as Optical in pain and biomarker studies to receiving novel Coherence Tomography (OCT) testing on patients medications for treatment of the disease. with neuromyelitis optica in an effort to better understand visual disability by measuring the nerve • Research continues to be a major focus at the JHTMC. fiber thickness in the eye. The study compares the Members of the JHTMC team presented several retina and optic nerve pathology in NMO, TM with posters at the annual American Academy of Neurology other neuroimmunological disorders such as multiple (AAN) meeting on subjects related to TM, including sclerosis. Findings of these investigations can be found (1) an investigation of how to better differentiate http://www.neurology.org/content/80/15/1406. vascular myelopathies from TM and (2) a look at TM in neurosarcoidosis. A recent study of biomarkers • Studies of cerebrospinal fluid and blood biomarkers for chronic myelopathy in neurosarcodiosis was are underway in the Neuroimmunopathology presented at the American Neurological Association Laboratory. With the support of the Bart McLean conference in New Orleans this past October, which Fund for Neuroimmunology Research, Dr. Pardo’s demonstrated a candidate protein, soluble amyloid A, lab is actively investigating the use of cytokine and to be a potential cerebrospinal fluid marker for this chemokine profiling, as well as the identification of disorder. micro RNAs in these biofluids for the exploration of potential biomarkers of pathogenesis and outcome. • Recruitment continues for several clinical trials which Banking of biological fluids obtained from patients can be found on the TMA website - https://myelitis.org/ with TM and other neuroimmunological disorders is research/clinical-studies-trials. actively pursued at the TM and MS Centers and serves the purpose of biomarker identification. • The JHTMC and its dedicated NMO Clinic has established national epidemiologic data, as well as a • Neuropathological studies are currently carried out look at the efficacy of treatments commonly used in for the characterization of the molecular and cellular the disease, in collaboration with the Guthy Jackson neuroanatomy and neuropathology of the normal and Charitable Foundation (GJCF), the University of inflammed human spinal cord. These studies will help Texas Southwestern Medical Center and Mayo to understand the pathophysiology of TM and other Clinic. They have also been involved in research neuroinflammaptory disorders such as MS and NMO.

WINTER 2014 NEWSLETTER PAGE 11 WHAT’S COMING IN 2014 • Funded by the Guthy Jackson Charitable Foundation, there is a new collaborative longitudinal biorepository • The JHTMC is planning an initiative to better educate launching called CIRCLES (Collaborative International practitioners on early diagnosis and continued care in Research in Clinical and Longitudinal Experience for TM in the future by actively participating in national NMO Studies). Its goals are to facilitate prospective and international conferences, as well as by continuing longitudinal observational studies that will improve our investigator-initiated investigations. understanding of the etiology, pathogenesis & biomarkers of NMO, and support industry efforts to • The NMO Clinic has begun investigating neuroimaging develop improved therapeutic agents and strategies in patients with NMO, in an effort to better differentiate that benefit patients with NMO. features of this disease from other neuroinflammatory diseases; finding new biomarkers may contribute to the diagnostic work-up. Also, they are working on researching what factors may influence adequate versus ineffective response to plasma exchange at the time of acute inflammatory attacks.

• New medication studies for the treatment of NMO and/or with TM associated with longitudinally extensive lesions will be launching in the coming year. Among them will be the use of Bevacizumab in acute http://www.hopkinsmedicine.org/jhtmc NMO and TM with LETM and Eculizumab as a use for 410-502-7099/ fax 410-502-6736 chronic immunosuppression in NMO. e-mail: [email protected]

The TMA provided Clinical Support Funding for Clinical Program Manager, Maureen Mealy, RN, BSN, MSCN, at The Johns Hopkins Transverse Myelitis Center under the mentorship of Dr. Carlos Pardo through a one-year grant in 2012-2013.

TMA ASK THE EXPERT PODCAST SERIES

Thank you to those who joined the podcast on “Children with rare neuro-immune disorders: understanding medical, educational and social considerations” as part of TMA’s Ask the Expert podcast series on December 16, 2013. The physician-experts on the panel were Drs. Benjamin Greenberg and Lana Harder from University of Texas Southwestern in Dallas.

The podcast recording has been made available on our website https://myelitis.org/education/podcasts. A transcript of the session will follow soon.

Stay tuned for more details on upcoming podcasts on our website!

PAGE 12 WINTER 2014 NEWSLETTER AQUAPORIN IN RECURRENT LONGITUDINALLY 4 IGG EXTENSIVE SEROSTATUS TRANSVERSE & MYELITIS Outcome euromyelitis Optica is an autoimmune disorder that affects both adults and children commonly causing severe re- current bouts of optic neuritis and transverse myelitis. Patients often present with either optic neuritis or transverse Nmyelitis only to have future relapses confirming the diagnosis of NMO. In 2004 an antibody was identified in a large number of NMO patients. This antibody recognized the AQP4 protein in astrocytes (a specialized cell in the central nervous system). Patients with this anti-AQP4 antibody have been shown to develop NMO when followed over time, but initially many patients tested negative for this antibody. In this scenario, scientists often question, do patients who test negative lack the antibody or is the test not sensitive enough to identify them?

Dr. Pittock’s group from Mayo Clinic recently published their original work focused on recurrent longitudinally extensive transverse myelitis (rLETM). The goal of the study was to study AQP4-IgG, a known clinical biomarker of NMO spectrum disorders, from patients with rLETM using a recombinant human AQP4 based assay who were initially classified as negative for this antibody based on an assay known as IIF. The authors did a search of the Mayo Clinic database based on diagnosis from Oct 2005 to Nov 2011 and identified 48 patients with rLETM, 75% of whom were positive for the NMO signature of AQP4 IgG using the IIF method with serial serum specimens. On retesting those that were negative using the recombinant human AQP4-based assays, the overall AQP4-IgG seropositivity increased from 75% to 89%.

The authors also set out to define the clinical characteristics and motor disability outcomes in those who were positive for AQP4 IgG. This study showed that 36% of rLETM patients who were seropositive will likely need a cane to walk within 5 years after onset, and the median time from onset to first optic neuritis attack was 54 months in those who went on to be diagnosed as NMO. The median number of acute attacks was 3 in those rLETM patients who were seropositive (ranged from 2-22 attacks). Immunosuppression reduced the relapse rate in both seropositive and seronegative rLETM patients.

The authors concluded that recombinant antigen based assays can better detect AQP4-IgG in rLETM patients and generally adults with rLETM are seropositive, and are likely to go on and be diagnosed as having NMO. For rLETM patients who are at higher risk to convert to NMO, testing for this antibody AQP4 using more sensitive assays is the recommendation of the authors if less sensitive tests show negative results.

This original research was published by Yujuan Jiao, MD; James P. Fryer, MS; Vanda A. Lennon, MD, PhD; Andrew McKeon, MD; Sarah M. Jenkins, MS; Carin Y. Smith, BS; Amy M. L. Quek,MBBS; Brian G. Weinshenker,MD; Dean M. Wingerchuk,MD; Elizabeth A. Shuster, MD; Claudia F. Lucchinetti, MD; Sean J. Pittock, MD in JAMA Neurol. 2014;71(1):48-54. doi:10.1001/ jamaneurol.2013.5055

WINTER 2014 NEWSLETTER PAGE 13 JAMES T. LUBIN FELLOWSHIP UPDATE

Dear Members of The Transverse Myelitis Association, appy 2014! This past year was an exciting learning opportunity for me through this fellowship. I consider myself ex- tremely fortunate to have had this opportunity, and I am so grateful to the TMA and the rest of the TMA supporting Hcommunity. It seems like my fellowship just began, and now it is coming to a conclusion. However, I have garnered so much experience and tools to carry forward into the next phase of my career, and I look forward to helping the TMA in the future in any way that I can.

From a clinical experience, I have continued to see both inpatients and outpatients with TM and related neuro-immune disorders. During the second phase of 2013, we reduced my clinical responsibilities by one day to allow for more time for research endeavors. I know that I have seen more acute TM cases than most neurologists will see in a lifetime, and, this has allowed us to gain a unique perspective about reclassification and how we look at TM in the future. We have also been following individuals diagnosed with NMO, ADEM, and MS in our children’s clinic, and I am confident that I can contribute positively both from a clinical and research perspective to our understanding of TM and other neuro-immune disorders. Furthermore, we have also been managing patients with autoimmune encephalitis, and I certainly feel that improving our understanding of all of these disorders will provide potential collateral benefits across the board. I am also planning on vis- iting Kennedy Krieger Institute in the next few months, and I hope to learn as much as I can about optimal rehabilitation, which is clearly a dire need in the TMA community.

With regards to research endeavors, I have had 3 articles accepted for publication. A paper entitled, ‘Light switch’ mental status changes and irritable insomnia are two particularly salient features of NMDA (N-methyl D-aspartate) receptor antibody encephalitis” was accepted for publication in Pediatric Neurology. Two papers we have written were accepted for publication in JAMA Neurology. The first is entitled, “Transverse Myelitis Plus Syndrome and Acute Disseminated Encephalomyelitis Plus Syndrome: A case report of 5 children.” The second is entitled, “HSV Encephalitis as a Potential Cause of NMDA Receptor Antibody Encephalitis: Report of Two Cases.” In addition, I also presented a poster at a nation- al meeting, Child Neurology Society, in Austin, TX entitled, “Three distinct subtypes of non-neoplastic NMDA receptor antibody encephalitis in children: why symptom presentation may have a bearing on prognosis.” I am in the process of submitting this work for formal publication.

PAGE 14 WINTER 2014 NEWSLETTER We have 4 IRB (Institutional Review Board)-approved research projects underway:

1. A retrospective review of idiopathic transverse myelitis and classification according to MRI features. We are hoping this can help us and others better target therapies and interventions based on the type of TM that patients have. We know everyone is different, and we feel strongly that our understanding of this disorder must reflect those differences. 2. Assessment of the prevalence based on location of MRI spinal cord lesions in patients with and without MS and other demyelinating disorders that have mild-moderate vertebral body disk disease compared to those that have no disk disease. 3. A retrospective review of medications used for agitation and immunotherapy interventions in anti-NMDA receptor antibody encephalitis. 4. A prospective study of the Agitated Behavior Scale on first hospitalization for patients with anti-NMDA receptor antibody encephalitis.

We have been making strong efforts to advance our research endeavors alongside patient care. I feel strongly that a complete TM-specialized physician must advance our understanding on both fronts. For clinical care, we are constantly educating other physicians and helping families cope with difficult diagnoses. For research, we are focusing our efforts on new and novel ways to look at TM and related disorders.

Lastly, I am excited to announce that when I depart UT Southwestern, I will be establishing a Neuroimmunology Center at Cincinnati Children’s Hospital and Medical Center in Cincinnati, Ohio. My wife and I feel that Cincinnati offers unique opportunities and support to help further build our knowledge and understanding of TM and related disorders. It is with some sadness that I am leaving Dallas, but I am excited to be part of Cincinnati, and the Pediatric Neurology Department at Cincinnati Children’s is committed to helping me and others grow this field further.

Without the TMA, I could never have achieved this much. I am so eternally grateful to everyone in the TMA community. This truly has been the opportunity of a lifetime, and I am confident that good things will come in our endeavors as a team in the future. Thank you so very much.

Sincerely, Allen D. DeSena

WINTER 2014 NEWSLETTER PAGE 15 FIRST ANNUAL GOLF OUTING THE TRANSVERSE MYELITIS ASSOCIATION RECOGNIZING 20 YEARS OF SERVICE Cipp'  aa Te My i WHAT

A four-person, best ball scramble, dinner and silent auction to benefit The Transverse Myelitis Association (TMA). Greens fees are $150 per person and include unlimited use of the range, 18 holes of golf, including cart, lunch, dinner, participation in contests for prizes. Dinner-only tickets are available for $30. Bonus: The greens fees include a voucher for one free additional round of golf at either Scioto Reserve or Kinsale Country Clubs (cannot be used on the weekend and does not include a cart). WHEN

Monday, September 29, 2014 9 – 11 a.m. Registration 11 a.m. Shotgun Start 5:00 Dinner, Awards Ceremony, Guest Speaker: Dr. Benjamin Greenberg WHERE

Scioto Reserve Country Club, 7383 Scioto Parkway, Powell OH 43065 GUEST SPEAKER

Dr. Benjamin Greenberg, Director of the TM and NMO Center at the University of Texas Southwestern in Dallas will share the latest updates and progress in rare neuro-immune disease research. WHY

To raise funds and awareness for The Transverse Myelitis Association. TMA advocates for and supports people and families affected by rare neuro-immune diseases, including Acute Disseminated Encephalomyelitis (ADEM), Neuromyelitis Optica (NMO), Optic Neuritis (ON), Transverse Myelitis (TM) and Recurrent Transverse Myelitis. These disorders occur when a person experiences an acute inflammatory attack in the spine, brain or optic nerve, causing disability and paralysis, depending on the extent of the injury. These diseases affect children and adults at any age. REGISTER

Please join us by registering online at https://myelitis.org/register/golf-outing-registration or by mail using the registration form. Invite your friends and family and you can register for dinner only as well! HOW TO VOLUNTEER

Contact Sandy Siegel, (614) 766-1806 or [email protected] HELP INCREASE OUR PHYSICIAN NETWORK!

ne of the most frequent requests based on disease expertise (ADEM, to be added to network. The TMA will we receive at the TMA is a referral NMO, ON, TM) and by specialization check the accuracy of the information Oto a specialist who understands (ranging from pediatric care to psychiatry that is provided and will confirm that the TM, ADEM, NMO or ON. Finding these to urology). The physician network is physicians and specialists added to the specialists is critical and also a challenge. organized geographically so that you are network have an open practice and are It is a challenge because these disorders able to search by location, as well. seeing new patients. Thus, there will be are rare and there are few centers and some time between the submissions from physicians who focus their specializations We need your help to expand and grow our community and when they are posted on these disorders. our network of physicians. If you would like on the network. to share information about your physician Last fall, we launched a web-based or medical professional in your area who Please help us by sharing your experience resource, the Physician Network, to has been able to offer you excellent care so others might benefit. If you have a address this critical need in our community. through your journey with one of these physician that you think should be on The network (www.myelitis.org/ rare neuro-immune disorders, please add our network, please add them to the list resources/physician-network) resource them to the network and help us expand by going to www.myelitis.org/resources/ allows anyone to browse through a list it. The link is www.myelitis.org/resources/ physician-network. We look forward to of experts in the field of rare neuro- physician-network. Please don’t forget to hearing from you and are excited about immune disorders. You are able to search ask your doctor for his/her permission the potential to improve medical care!

WE DON’T WANT TO LOSE YOU

Please keep us informed of any changes to your mailing address, your phone number and your email address. You can send changes either by going online to http://tinyurl.com/bswg6yp or via email at [email protected].

For those of you who wish to receive our communications by postal mail, the Association does all of our mailings using the postal service bulk, not-for-profit rate within the United States and our territories and protectorates. We save a considerable amount of money by doing our mailings this way. Unfortunately, when you move and don’t provide us with the change, our mail will not be forwarded to you after your grace period, and this class of mail is not returned to the sender. The cost to the Association is substantial. These are wasted printing and postage costs. Please keep your information current. Your diligence is greatly appreciated.

PAGE 17 A YOUNG GIRL’S DETERMINATION TO HELP CHILDREN ATTEND THE TMA FAMILY CAMP

This is a story of a young girl who was affected by a rare neuro-immune disease called Transverse Myelitis in 2006 when she was 4 years old. Her mother sent us this story with a very generous donation to support our mission.

Abby was looking for a way to raise money for the TMA to help send kids with TM to camp. She constantly makes different items out of duct tape. She came up with the idea of making wallets, coin purses, iPod holders, purses, recorder holders and flower pens and then selling them at the Christmas Store at her elementary school. Students come in and buy gifts for their parents, grandparents, siblings and special people. The PTO sponsors the event. They waived the entry fee for Abby since she was donating all of her proceeds to the TMA.

Abby worked hard in the months prior to the sale to make enough inventory. She also enlisted her brothers, cousins, grandma, uncle and parents to help make all of her items. The day of the sale, her grandma worked her table since Abby had to be in class. Abby and her little brother, Drew, also made Rainbow Loom bracelets to sell. She ended up selling 30 flowered pens, 32 wallets, 24 coin purses, 35 bracelets and 10 pens and made just over $300.

Abby and her family come to camp every year and experience this very special place with other families with children with TM, ADEM and NMO. We are thrilled to make this experience available to families around the world. This opportunity is made possible because of the generous spirit and kindness of people like Abby. If you are looking for a worthy cause, helping to get these kids to camp is a great one. We encourage you to get involved. To learn more about camp, please visit our website http://myelitis.org/education/camp.

PAGE 18 WINTER 2014 NEWSLETTER AMERICAN PARALYMPIC MEDALIST DR. ANJALI FORBER-PRATT JOINS THE TRANSVERSE MYELITIS ASSOCIATION’S BOARD OF DIRECTORS

he American Paralympic Medalist and Assistant “I have been living with transverse myelitis for 29 years. Part Research Professor at the University of Kansas, Anjali of my own mission in life is to show others what is possible and Forber-Pratt, has recently joined The Transverse help them reach their fullest potential. I am honored to join TMyelitis Association’s (TMA’s) Board of Directors. the advocacy and education efforts of the Board of the TMA. To me, there is power in seeing someone like you. This is an The connection between the young athlete and The incredible opportunity for me to be that person for others and Transverse Myelitis Association deepened during the TMA help encourage them to live an active and healthy life despite Family Camp held last year from July 24 – 28, 2013 at the their challenges.” Center for Courageous Kids in Scottsville, KY. Anjali gave an inspirational presentation about her personal journey The TMA is delighted to have Dr. Anjali Forber-Pratt and encouraged the TMA community, particularly the join the TMA’s Board of Directors, where she brings her children that suffer from rare neuro-immune conditions leadership, academic excellence and, above all courage, to to reach for their goals. this new endeavor. “We are so proud to have Dr. Forber- Pratt elected to the TMA Board of Directors. Her intellect, Anjali recently attended the 2013 Rare Neuro- determination, and passion will help us achieve the important Immunologic Disorders Symposium in Dallas, TX on goals we have to improve the quality of life for people with October 25-26, where she gave the Keynote Address. these rare neuro-immune disorders. Anjali is an inspiration to everyone. We know that she will make an important and Dr. Forber-Pratt epitomizes courage and persistence and very positive difference for our organization and for our that dreams can come true when you work to make those community,” shared Dr. Sandy Siegel, President of The dreams into a reality. She is a wonderful role-model for all TMA. those people affected by a rare neuro-immune condition.

WINTER 2014 NEWSLETTER PAGE 19 OUR COMMUNITY’S FEEDBACK ON CLINICAL TRIALS Summarized by Samuel Hughes University of Texas Southwestern Medical Center – Dallas, TX

ast summer, the TMA reached survey. Of the 84 NMO patients who prescribed therapy. While many NMO out to the community to learn and answered these questions, 25% had a patients have found success with the Lgain feedback from patients and single attack, 52% had between two and standard treatments, seeing numbers caregivers about their interest in clinical five attacks, and 23% had five or more like this can be startling; it’s a reminder trials, specifically the ever-controversial attacks. Of these, 33% had had an acute to us all that these drugs have not been placebo-controlled trials, and there was a inflammatory attack within the last year. formally tested and approved to treat great response to the survey. There were NMO, rather they are used off-label. 1,231 responders, with 77% being patients Some of the very interesting information When a drug is used “off-label” it means and 22% being caregivers. All of the we learned from this survey was the that the FDA has not approved the drug diagnoses for which the TMA advocates community’s interest in clinical trials, to be used for the purposes for which it for were represented, the majority being specifically in placebo-controlled drug has been prescribed. This is a common TM patients with NMO patients coming trials. There’s a lot of rumbling within practice with many types of medications. in second. Some of the questions asked the NMO research world about the Physicians will use certain drugs off-label were about disease history, like: “How need for Food and Drug Administration for many reasons, many times based on many attacks have you had?”, “Have you (FDA) approved therapies for NMO anecdotal experience or theory as to had an attack in the last year?”, “Do you considering its relapsing nature. For that how certain drugs can work to mitigate take any immune-modulating therapy?”, matter, as new drugs are developed, this different disease processes. This has and, “Have you had an attack while on is relevant for Transverse Myelitis, ADEM been the case with NMO and the use of an immune-modulating therapy?” Since and all rare neuro-immune diseases. immune-suppressing therapies. many of the respondents were idiopathic There are many NMO patients who are TM patients, the majority had had a currently taking medications to prevent There has been a surge recently in the single attack, but about 28% shared attacks. According to our survey, about world of NMO research to create new that they had had more than one attack 87% of the NMO patients were on a therapies targeted specifically to this during their disease course. These were therapy to control their NMO, but of disease process. Pharmaceutical and predominantly the NMO patients, and that 87% of NMO patients, 43% also biotechnology companies are showing we learned a lot from them through this said they had a relapse while on their a great interest not only in creating

PAGE 20 WINTER 2014 NEWSLETTER therapies based on new basic science better outcomes than the natural history the trial. Others said they would only research, but also in funding full-scale of the disease, otherwise there’s no way consider it if their current therapy were clinical trials to test these drugs. This for them to compare one drug against not working, or if their treating neurologist is when we come to the discussion of another drug. The need for placebo- approved of the research. All of these are placebo-controlled trials, meaning trials controlled trials is purely scientific, but valid concerns, concerns that the TMA is where we test an experimental drug it does inherently raise concerns from voicing on your behalf. against no drug at all. Many of you are many groups of people, including and wondering, “But why does it have to be most especially the patients. It is only a matter of time before many placebo-controlled? Why can’t they of you are approached about a clinical compare these new drugs to the drugs Within the NMO patient group who trial testing a new treatment for NMO, that the doctors prescribe now?” These responded to the survey, 35% said they a trial that could very well be placebo- are great questions, questions that even would participate in a placebo-controlled controlled. The research physicians, the research physicians are asking the trial, 15% said they would not, and 49% industry sponsors, and patient advocacy FDA. Many drug trials are designed said that they were not sure. It was very groups are assuredly doing everything to compare a new drug to an existing interesting (although not surprising) to they can to make these upcoming trials drug, but in these trials the existing drug see that about half of the NMO patients scientifically rigorous while still being that is used as the comparator is already who took the survey were on the fence safe through designing a clinical trial that approved by the FDA to be used for that about their willingness to participate in has several checks and balances with purpose. With NMO, none of the drugs this kind of treatment trial. Even more the patient’s safety and health in mind. that are currently used are approved by interesting than the numbers were the At the end of the day, it will not be the the FDA to be used in NMO, therefore personal answers that were given when researchers, or drug companies, or even the FDA would be unable to properly asked what they would need in order the FDA that approves a new therapy for interpret any data that came from a to participate in such a trial. Of course NMO, it will be you – the person living trial that used these existing drugs as many expressed concern about the risk with the disease – to decide if the risk is comparators. The FDA must be able to of relapse, and that their participation worth the benefit. see that patients taking a therapy have very much depended on the design of

IN THEIR OWN WORDS ARTICLES FACEBOOK

In each issue of the Journals and Newsletters, we will bring you a column that presents the experiences of our members. The stories are presented In Their Own Words by Find The Transverse Myelitis way of letters we receive from members like you. We are most appreciative of your Association on Facebook! It is a willingness to share very personal stories. It is our hope that through the sharing of great way to support the TMA and these experiences, we will all learn something about each other and about ourselves. is a wonderful way to network with It is our hope that the stories will help us all realize that we are not alone. It is important people in our community. Please take to bear in mind that the stories are not written by The Transverse Myelitis Association the time to become a fan of our page but come from our members. It is also important to note that the newsletters and by clicking “Like”, and tell your friends journals are archived on our web site. Should someone do an Internet search of your and family about our community’s name, your article is likely to be identified in his or her search results. You may submit page. Facebook is a great way for us to your stories by sending them either by email or through the postal service to Sandy raise awareness about these disorders Siegel. Please be sure to clearly state that The Transverse Myelitis Association has and your experiences. Our link is your permission to publish your article. http://www.facebook.com/myelitis.

WINTER 2014 NEWSLETTER PAGE 21 THE TRANSVERSE MYELITIS ASSOCIATION THE TRANSVERSE MYELITIS ASSOCIATION

believed that almost as a matter of doctrine. This paralysis is it, I figured. It could only get worse, not better. My sole HOPE focus, outside of exercise, has been trying to avoid nasty falls, skin breakdown, and infection. Every time I read in Allen Rucker the newspaper about a “breakthrough in paralysis” or some such miracle on the horizon, I turn the page. Years away and too late for an old-timer like me, I’d tell myself. I don’t I am not a doctor, but I play one every time I attend a tell myself that anymore. conference of experts focused on the state of transverse myelitis. The most enlightening such conference I’ve One problem, for instance, I thought was intractable: ever experienced happened a few weeks ago in Dallas, severe contracture, or shortening of the knee muscles, Texas. The title is a little scary: the 2013 Rare Neuro- in both legs. My legs are bent at close to 90 degrees and immunologic Disorders Symposium, or RNDS, if you won’t bend back. I have repeatedly been told, “Tough luck, can remember that. Hosted by the TMA, Dr. Benjamin you can’t change that.” Not so, said Dr. Sadowsky and Greenberg of UT Southwestern Medical Center and the others. Depending on the nature of the contracture, there Johns Hopkins Transverse Myelitis Center, this was a are both physical and surgical ways of dealing with it. All of gathering of some of the best research doctors in the world a sudden I can imagine my legs being straight again. To me, who specialize in our little group of “orphan” neurological that would be a miracle. disorders like transverse myelitis, neuromyelitis optica, acute disseminated encephalomyelitis (ADEM), and Straight legs would allow me to leap into many of the other optic neuritis. The two-day conclave was geared to these restorative therapies outlined at the symposium. You can disorders but had implications for a much larger group - lump many of them under the mantle of Activity- Based those with spinal cord injury in general. I have one of those Rehabilitation Therapy (ABRT). The simplest such therapy, – I’m a T-10/12 para – and the fact that it derived from strongly recommended by every doctor in the room is TM doesn’t make the paralysis much different. Different exercise itself. Mood stabilization, pain, tight joints, overall source, same injury. As one of the guest lecturers pointed strength and endurance – all are enhanced or relieved by out, in many cases, “TM = Spinal Cord Injury.” exercise. This relentless drumbeat – “exercise, exercise, exercise” – drives many people nuts. It’s like telling This version of the recurring RNDS was dedicated to someone overweight to eat less food or an alcoholic to an angle of research that is dear to all of us that fit the drink less Scotch. But, all whining aside, exercise is critical brackets above: rehabilitation, repair, and recovery. Yes, to your health. It’s an obvious truth and something that will recovery, the impossible dream, the unreachable star. The only make you better. In some cases, says Dr. Sadowsky, goal is restoring nerve function in the spine. And if you exercise has been known to “promote functional recovery.” listen to this group, we are well on the way to getting there. This leads to a specific kind of activity-based therapy called Here was the big message everyone in attendance walked gait training. Gait training is rehearsing the act of walking by away with: neural restoration is possible. This is actually a actively simulating it over and over and over again. This can mantra we all should learn and repeat daily. To quote Dr. run the gamut from treadmill training, if you are capable, Cristina Sadowsky of Johns Hopkins and the Kennedy to the complex mind/motor/computer contraption that Krieger Institute, we are capable of “achieving significant, is used in locomotor training, a whole other conversation. incremental improvement at any time following injury.” I Gait training stimulates the right nerves and teaches repeat: at any time. Whether you were injured yesterday or you how to walk again without contact with the brain. It like me, seventeen years ago, you can improve. all begins with what Karen McCain of UT Southwestern identified as the Central Pattern Generator (CPG). These How many of you long ago gave up on the idea your are neural networks that can produce patterned outputs, condition would ever change? That’s what the doctor like walking, without the brain being involved. Dr. McCain no doubt told you soon after your injury. “I’m sorry, son, also explained the idea of “learned non-use.” If you don’t there is no recovery from this.” Before this conference, I use your paralyzed muscles, they figure that non-use is

PAGE 22 WINTER 2014 NEWSLETTER THE TRANSVERSE MYELITIS ASSOCIATION THE TRANSVERSE MYELITIS ASSOCIATION

their natural state. Is this reversible? Yes. I feel remiss in not being able to adequately do justice to half the people on stage and their research and discoveries. In addition to reinvigorating the CPG one way or another, It’s not out of disinterest, just limited brain capacity. Worth there are also gait improvement experiments involving noting is a here-and-now study, led by Dr. Michael Levy, the much-talked-about drug called Ampyra. Ampyra is involving the direct surgical transplant of stem cells into a already in use with MS patients to improve motor skills. damaged spinal cord. Also, there is an antibody compound For the first time, there are trials in motion that will judge called rHIgM22 that might promote remyelination. Plus, the effect of Ampyra on TM patients. Here’s where I got there was a lot of enlightened talk about how to deal with a little lost. I know that this has something to do with fatigue, bladder problems, and cognitive rehabilitation. inhibiting potassium and rearranging the biochemistry of Got bladder leakage problems? Ask your urologist about demyelination, which is probably all I need to know. If the Botox. Yes, the same thing that disfigures celebrity faces pill works, I’ll be down at CVS to pick up my order. could help you.

I’m also excited but a little vague about the benefits, some The immediate things I didn’t forget involved the least of them mind-boggling, of FES, or Functional Electrical amount of specialized expertise. I now take Vitamin D Stimulation. FES, according to Dr. Daniel Becker at Johns daily and immediately asked my urologist about Botox (he Hopkins, can actually stimulate stem cells, which can, in said I wasn’t a candidate). The more involved restorative turn, give rise to new neural cells to replace the damaged therapies that seem so promising are not readily accessible, ones in your spinal cord. Nerve restoration using electrical at least to me, and no doubt involve a commitment of time stimulation? Think about it. Sounds like something out of and money that many people can’t make. That’s often the a Frankenstein movie. Nonetheless, in competent hands, frustration of a gathering like this. With the help of some it can produce real change. Even on a physical level, FES very bright and caring people, you can see over the horizon. combined with exercise can improve muscle strength and You just don’t know how to get there. flexibility. But back to the easily-understood main point: functional ABRT, CPG, FES, plus acronyms that flew right by me, improvement is possible. None of these therapies are a like LINGO – it got a little overwhelming over two days. magic pill that will get you up and walking tomorrow, but An English visitor to the conference showed me his ringed taken as an aggregate, they produce something right now notebook, each page stuffed to the edges with single-line that in and of itself can help you progress: hope. Think of scrawling. It was like he was in med school. I’m sure he hope as an exercise you must commit to on a daily basis. It went home, looked at his frantic notes, and asked himself, may be the beginning of your way back. “What is this gobblygook?”

2013 RNDS PRESENTATION VIDEOS ARE NOW ONLINE!

The 2013 Rare Neuro-immunologic Disorders Symposium was hosted by The Transverse Myelitis Association, University of Texas at Southwestern, Chil- dren’s Medical Center and The Johns Hopkins Project RESTORE on Oct 25- 26, 2013 at University of Texas Southwestern in Dallas. All presentations are now available to view online! The link to watch them is https://myelitis.org/portfo- lio-view/2013-rare-neuroimmunologic-disorders-symposium.

This symposium focused on current strategies and research projects addressing opportunities for recovery of function after CNS damage.

WINTER 2014 NEWSLETTER PAGE 23 THE TRANSVERSE MYELITIS ASSOCIATION THE TRANSVERSE MYELITIS ASSOCIATION

IN THE MIDDLE

By Renee Elton

PAGE 24 WINTER 2014 NEWSLETTER THE TRANSVERSE MYELITIS ASSOCIATION THE TRANSVERSE MYELITIS ASSOCIATION

ny case of transverse myelitis results in more the blizzard and bring in the cows. At my age, 53, she was questions than doctors or the individuals with the more than able to square dance the night away and travel Adisease can answer. How your family deals with the to China with her husband. She can shoot a rifle. She is 83 disease can be even less predictable. I have a wonderfully now, and clearly remembers calling her horse to the fence supportive spouse and two darling daughters. I have an in northern Montana, leaping on bareback, and delivering extended Sicilian family and an extended Norwegian homemade beer to the landless Chippewa Indians sleeping family. Each day I travel back to the mother lands, back in her father’s barn in 1938. to languages and customs of enormous wealth and humor. How can I tell her that I face real danger when malfunctioning My father calls every day and asks, “How are your legs?” smoke alarms go off in the house at 1 AM, and I leap out of I contracted transverse myelitis months ago, back in May bed and start to run out the front door? I need a “comfort 2013. He has called every day with the same question. horse” (not “comfort dog”) to land on! How can I explain to Then he asks what I am cooking. He is cooking the greens her that airline travel is physically comical? I look perfectly and cannellini beans. Maybe tomorrow he will make the able to stand in line for an hour, take off my shoes, and escarole and penne. Yesterday, he made the veal meatballs stand on the little feet in the gamma-gamma machine. and sauce. We discuss the price of “good” pecorino cheese When I stagger a bit and can’t get my shoes off, I see other in Ft. Myers. Next, he tells me about his damned brother travelers stare—is this lady tipsy? I never could sing or who made the wine and stole his recipe. My Uncle Pete dance, so at least I have no regrets there. Actually, buzzing is sitting there with him, drinking wine. They begin to feet may improve my dance moves. So I plan on making swear at each other, and he hangs up. They will go to the some homebrew at my local brewery co-op real soon. I can track today and lose ten bucks each, then come home for only imagine how it will react with the Cymbaspirovia, so I meatballs. How can I explain to him my legs belong to an will avoid signing up for Swing Dance. extraterrestrial addicted to delayed-release capsules that cost as much as space travel? I just tell him what I am Transverse myelitis is like that, a crazy family of stories cooking. Thanks to the capsules, my diet must include any shifting and morphing over the days, months, and years food that helps exfoliation. My loving spouse asks me every of the condition. Every year I write a family newsletter at day, did you “EXFOLIATE?” Good thing flax seed is a Christmas, and this year was no different. But when I started staple on my home planet, Colacia. Thank goodness, I love writing the usual bragging, happy, sad, jumbled missive, I all greens and know how to cook them with Uncle Pete’s realized I was not able to tell my friends and family what wine. My health insurance company does not allow me to TM has done to me. So instead, I sent a Christmas Buffet purchase the “good” pecorino, so I use a variety made from Menu, shaped like a pine tree, filled with the Sicilian and corn oil. They assure me the side effects are no worse than Norwegian specialties my girls make each year. The dinner with the original formula, and my short-term memory will was sumptuous and wonderful, replete with krumkaka, return at a later date. Where was I…? pizzelles, struffoli, and lefse.

My mother-in-law calls less frequently, as she has her Few people, aside from the readers of this newsletter, church singing group eight times a week, twice on Sunday. will ever understand our TM travails. Few people can They sing after the dessert and before the wine. She does understand that neuropathic pain is real pain, buzzing feet not ask about my legs, not because she does not love and are not “happy feet,” and exfoliation is not covered by adore me, but because I have no visible, or outward signs insurance. So, learn to make wine. Save for a trip to China. of disease. In Norway, this means you are able to withstand Answer the phone and laugh and cry.

WINTER 2014 NEWSLETTER PAGE 25 ANNOUNCING A NEW ADDITION TO THE TMA STAFF

y path to coming to work with the TMA is not one that I could Rebecca have ever foreseen nor would Whitney, whom many M have necessarily chosen. It still seems so in the community know and who surreal at times when I think about how has been a volunteer with the TMA for my family’s life has changed over the past a while now, has recently joined the TMA in a 6 years, 1 month, and nearly 1 week, all be- part-time role as Pediatric Programs Manager. In cause of transverse myelitis. Our son was this role, Rebecca will be working closely with our TMA born on a nearly 80-degree day in the staff, Board and community to build a strong and engaged summer of 2007. He was a perfect baby; community presence for pediatric neuro-immunologic happy, healthy, bouncy, just the light of diseases. Rebecca will also be the point person for our recently our world. He was healing to my heart af- funded pediatric outcomes CAPTURE study in partnership ter a difficult time with our second child with UTSW, JHU, Children’s Hospital of Philadelphia who struggled with various medical issues (CHOP), SickKids Toronto funded by Patient Centered through his infancy. We had just started Outcomes Research Institute (PCORI). We are getting back into the swing of a different thrilled that Rebecca has agreed to join us and look daily routine, having returned to work from forward to a focused program for children and maternity leave and now parents of three families affected by these diseases. young children. It was a balancing act that sometimes felt more like a circus act, but it was working!

PAGE 26 WINTER 2014 NEWSLETTER I will never forget the days immedi- we met another family and young boy the TMA. This is a matter that is deeply ately preceding and the date of De- who also had TM. We had found our personal and of my heart. I am com- cember 13, 2007 when we suddenly extended family and through them, mitted to doing my best for each of found ourselves in the ICU with our became more closely acquainted with our children. infant son with no idea as to why he the TMA. Since then, I’ve had a pas- was no longer moving and struggling sion to help further the TMA’s mis- While my heart has started to heal, it to breathe. Our life as a family, our sion. I firmly believe in them and their still aches where it has started to come lives as individuals, were turned upside goals. I see a brighter future for my son together and I swear that there are down by an unheard of disease called through the work they have set out to pieces of it that will remain forever in transverse myelitis. My heart was complete. that pediatric ICU room. It will never broken. It was shattered into pieces be the same. I remain hopeful yet still and seemed they could never be put As I move into the role of Pediatric struggle, especially with trying to hold back in place. I had no idea what the Programs Manager for the TMA, I look back and sort my mixed emotions. As future held for us; for my baby that forward to working with the executive I type, I am able to watch out the win- was motionless, taking only a small, team, the physician network, families dow as my daughter runs by on her shallow breath every so often with the and patients, to expand what we know fourth mile with ease, my older son ventilator, for my other two children about TM, ADEM, NMO and ON trots through the snow without any that couldn’t grasp why their mom and in the pediatric population. I hope to mishap heading back to their fort, and baby brother couldn’t come home, for be an advocate for and provide sup- my youngest, determined to let noth- my husband and I as partners and par- port for the children and families who ing stop him, struggles to stay up on ents; we had just been through enough have never heard of such diseases but his feet. He’s trying diligently to car- with our other son, what was this going have found their lives upended as ours ry a large snowball, a “diamond” that to do to us? was in 2007. I hope to connect them he has found to house in their fort. to one another so they don’t have to It hurts to see him struggle while the Our lives since our son’s diagnosis has experience this journey of navigating other two move with such ease. But he not been easy. We’ve been so busy these rare neuro-immune diagnoses doesn’t give up and has even managed trying to live our lives as “normal” as alone. I most sincerely want my son, to find “diamonds” in this cold, harsh possible while learning about TM and your daughter, your grandchild, you winter. I’m not giving up either and will making sure that our son has what he as parents, to have hope for the fu- look for the diamonds, too. needs in terms of medical care and re- ture and to know that we are working habilitation. We felt so alone and would towards eliminating the debilitating - Rebecca Whitney become so frustrated trying to explain effects of TM. I am truly humbled by what the disease was until 2012 when the offer and trust of this position with

APPLY FOR THE 2014 TMA FAMILY CAMP

The TMA Family Camp will be held at The camp will accept the first forty completed We cannot wait to experience the magic of Center for Courageous Kids in Scottsville, applications from our members for review. camp at CCK with you in 2014! KY from July 23 – 27, 2014! Applications The application must be completed – are now open. Please apply by going to both the electronic, online portion and You can view highlights of the 2013 TMA http://www.thecenterforcourageouskids. the medical portion in order for camp to Family Camp and download our brochure org/camperapp.html and select Family consider it a completed application. The by going to. Retreat Application. We have limited space, subsequently submitted applications will be so we encourage you to apply early! The placed on a waiting list. Please apply early!

WINTER 2014 NEWSLETTER PAGE 27 THE TRANSVERSE MYELITIS ASSOCIATION THE TRANSVERSE MYELITIS ASSOCIATION DEBBIE CAPEN RECEIVES

t was an honor for the TMA Board of Directors to chores that we need to get accomplished in order to be recognize Debbie Capen as the 2013 Distinguished a transparent, responsible and accountable organization. IService Awardee. She was given the award at the 2013 Debbie spends many hours a day, often seven days a Rare Neuro-immunologic Disorders Symposium held in week, all year long participating in getting our work done. October in Dallas. Debbie has been an Officer and Board And she is involved in everything, from managing donor member of the Association since nearly the founding of recognition, to planning camps and education programs, our organization. I found Debbie on the Transverse Myelitis participating in the publication of our newsletters, as well Internet Club, shortly after Jim established this list serve as numerous other activities involved in the day to day group in 1997. When the Internet was first developed, the operations of any organization. Debbie also is available to TMA was a very small group, and most of our members people in the community who are seeking guidance about knew each other fairly well and had created many personal a myriad of issues in navigating the health care system and relationships. We asked Debbie to be the Secretary of the finding as many answers to their medical questions from TMA. the information we offer on our web site. And if that were not enough work, Debbie is also very actively involved in There is an amazing amount of work involved in running the Southern California Support Group that she helped to an organization like the TMA. And for most of our 20 start many years back with Cindy McCleroy. year existence, all of this work was being performed by volunteers. And Debbie is one of the volunteers who also has Her greatest supporter and her best friend is her husband, TM with all of the very complicated and difficult symptoms. Michael. Michael not only supports the work that Debbie Debbie was also diagnosed with Lupus after receiving a TM does for the TMA, he is also an active participant. Michael diagnosis, so she has more than her fair share of issues to has been involved in our work since the beginning when manage. In spite of her physical challenges, Debbie has he was a caregiver at our first Children’s Workshop in been a dedicated, remarkably consistent, dependable and Columbus in 2002. Debbie and Michael continue to loyal volunteer of our organization. tirelessly volunteer for the TMA at our family camps transporting families to camp from the airport in Nashville. In doing the work of the TMA, we experience some really Michael and Debbie are there to help these families during amazing opportunities such as our family camps and the entire week of camp. They are a wonderful team, and symposia. There are also some mind bogglingly difficult we have all benefitted greatly from their involvement. and sometimes horrible experiences, because running an organization can cause mayhem, and because doing Over these many years, Debbie has been a wonderful this work exposes us to thousands of people who have colleague and has become a great friend. She so deserves complicated health issues and sometimes bad things this recognition as the Distinguished Service Awardee, and happen. And often times the challenges are intensely we look forward to Debbie’s incredible contribution for difficult emotionally. It is hard work.. very hard work. But many years to come. She has made a positive difference it is not just these highs and lows that define the nature of in so many people’s lives, and mostly for those of us who Debbie’s involvement with the TMA over all of these years; are honored and grateful to be working with Debbie closely it is the day to day tedious, energy and time intensive every single day.

PAGE 28 WINTER 2014 NEWSLETTER THE TRANSVERSE MYELITIS ASSOCIATION THE TRANSVERSE MYELITIS ASSOCIATION

Life as I knew it ended on December 30, 1996, and my new love me as much as I love them. The course of my life changed life adventures began as a victim of transverse myelitis. I was – from being a contractor and decorator to advocating for desperate for answers, and when I returned home from the my own health care and helping others do the same. What a hospital, the first thing I did was get on my new computer and change in lifestyle! As a recipient of the Distinguished Service search for “transverse myelitis”. First, I met Jim online, then Award, I thank you all for this honor, thank you all for being I began communicating with Deanne, Sandy and Pauline and in my life. the others who were searching for the same answers. Over the years, I have come to love each and every one of these people - Debbie Capen as members of my family. I am so honored to know that they

WINTER 2014 NEWSLETTER PAGEPAGE 2929 THE TRANSVERSE MYELITIS ASSOCIATION THE TRANSVERSE MYELITIS ASSOCIATION

JOIN THE TMA’S WALK-RUN-N ROLL CAMPAIGN

Last year in April, the TMA launched an ambitious nationwide Walk-Run-N-Roll campaign to increase awareness and funds for research and programs that the TMA offers under the “10 cities-1000 people-$100,000” slogan.

ix cities participated, more event in your area? Do you want to to how to get started! Please begin by than 1000 people joined the raise awareness for these rare neuro- sharing more about yourself and why campaign and helped raise immune diseases that so unexpectedly you would like to become involved in Smore than $100,000 for research rob so many people of their normal a walk in your city or volunteer and and education efforts!! The walks lives? Please join us in this effort in be part of a Planning Committee. All were led by amazing, passionate and 2014! We have created a website forms are available online to complete committed volunteer leaders and for the walk - http://myelitis.org/get- and send to us. held in South Jersey (NJ), South involved/walk-run-n-roll-campaign - Park (PA), Douglasville (GA), Cocoa where you can learn from the walks of We look forward to hearing from you (FL), Holland (MI) and Downer’s 2013. and more importantly working with you Grove (IL). It was our first year and all in making the 2014 TMA Walk-Run- expectations were surpassed! We know it can be intimidating and N-Roll Campaign a great success! overwhelming to think about leading We want to be more ambitious an effort like this. If you are wondering, Go to http://myelitis.org/get-involved/ this year! Would you like to lead or “where do I start?” – we have provided walk-run-n-roll-campaign for more volunteer for a Walk-Run-N-Roll you with all the tools on the website as information.

PAGEPAGE 3030 WINTERWINTER 20142014 NEWSLETTERNEWSLETTER WINTERWINTER 20142014 NEWSLETTERNEWSLETTER PAGEPAGE 3131 THE TRANSVERSE MYELITIS ASSOCIATION THE TRANSVERSE MYELITIS ASSOCIATION

SUPPORT GROUP IN DALLAS-FORT WORTH AREA, TX

arbara Nichols, who is living with in the world of NMO. Caregivers The group is planning the next meeting NMO, reached out to the TMA and individuals living with these rare in February. If you are in the Dallas- in the summer of 2013 to start neuro-immune diseases attended, got Fort Worth area and would like to join Ba support group in the Dallas-Fort to ask questions and learn from each and meet others, please email Barbara Worth area. Thanks to her leadership, other’s experiences. Nichols at [email protected]. Although the first meeting of the Dallas-Fort the group started out initially as Worth support group was held on A second meeting was held in focused on NMO, the support group Sept 14, 2013, which 27 members November 2013 and Martha Mann is focused on both individuals living attended. Dr. Benjamin Greenberg, shared updates on the latest research with TM and NMO. Future meetings Director of the TM and NMO Center and developments from the Rare will be focused on specific symptom at University of Texas Southwestern Neuro-immunologic Disorders management and also keeping up on and Martha Mann, a clinical research Symposium in Dallas, which was held the latest research and discoveries. nurse also at UTSW joined the group on Oct 25-26, 2013. and shared about what is happening

PAGE 32 WINTER 2014 NEWSLETTER THE TRANSVERSE MYELITIS ASSOCIATION THE TRANSVERSE MYELITIS ASSOCIATION

In loving memory of JOAN FINK

February 17, 1940 – December 20, 2013

hile I am incredibly sad at the passing of my of her friends found a scruffy little terrier wandering the friend, Joan Fink, she is celebrating the New streets. A bath, food and lots of love and this little stranger WYear with her Lord and Father. Joan passed away became her best friend. in the evening of 12/30/2013. Back in about 2000 Joan, Debbie Capen, Teri Apodaca and I met at the Abilities Joan had many friends that she was always there for, Expo in Long Beach, CA. We all had TM, and for Joan and supporting them emotionally. She loved her family so Teri it was the first time they had met others with TM. We very much. She threw herself into all that she did and all became friends and belonged to the TM support group succeeded in giving the best of herself to all she knew. She in Southern CA that Debbie and I had started. was always there when I needed her advice or just to talk, no matter the time of day or night. Joan and I went to many Angel baseball games together. The Angels along with the New Orleans Saints were her There are so many wonderful things to say about Joan. I two favorite sports teams. One of Joan’s favorite memories miss her and she will always be a wonderfully remembered of the Angels was the day Arte Moreno, the Angels owner, friend. Transverse Myelitis has lost a great friend and our invited us to watch the game from his suite along with TM group missed her so very much at our last meeting on some baseball greats. It was a thrill for both of us. January 18, 2014. Joan always brought much advice, many helpful suggestions learned from her past medical career, When I spent a year in the hospital (all of 2011), Joan took and a lot of humor to all the meetings. Rest in peace my my dog into her home and loved her like I did. She took dear friend. Missy (my dog) to the vet, to get her nails done, and walked her several times a day. It was so hard for her to return - Cindy McLeroy my Missy dog to me. However, about two weeks later one

The Transverse Myelitis Association is proud to be a source of information about ADEM, NMO, ON and TM. Our comments are based on professional advice, published experience and expert opinion, but do not represent therapeutic recommendations or prescriptions. For specific information and advice, consult a qualified physician. The Transverse Myelitis Association does not endorse medications, treatments, products, services or manufacturers. Such names appear in this publication solely because they are considered valuable information. The Transverse Myelitis Association assumes no liability whatsoever for the contents or use of any medications, treatments, products or services mentioned.

WINTER 2014 NEWSLETTER PAGE 33 THE TRANSVERSE MYELITIS ASSOCIATION THE TRANSVERSE MYELITIS ASSOCIATION

THANK YOU TO OUR SUPPORTERS!

The TMA had an incredibly successful fundraising year in 2013. We are so thankful for your generous support of the TMA that enabled us to raise more than $385,000! Below is a breakdown of funding sources for 2013:

INDIVIDUALS/GRANTS / EDUCATION GRANTS MEMORIAL/CORPORATE & SPONSORSHIP

WALKS/OTHER CAMPAIGNS

The TMA 2013 Walk-Run-N-Roll Campaign, which built on the success of a walk that was held in NJ in 2012, has been a huge success in increasing awareness of the TMA and building community support among local TMA members. Events held in New Jersey, Pennsylvania, Georgia, Florida, Michigan, and Chicago, along with a silent auction in Minnesota raised over $110,000 this year. Other events organized by members and their families and friends helped raise significant contributions for the TMA. Many thanks to the organizers, participants, sponsors, and supporters of these events!

The TMA continues to pursue institutional grants that support specific member programs. We are grateful to our members and donors who supported us with several gifts through the year. We thank those who chose to honor the memory of their family and friends by donating to the TMA – we are humbled by your generosity.

A complete list of 2012 and 2013 donors is included in the newsletter. Once again, a sincere thank you for your support!

A full financial report for 2013 will be available on our website after our 990 tax form is filed.

PAGE 34 WINTER 2014 NEWSLETTER THE TRANSVERSE MYELITIS ASSOCIATION THE TRANSVERSE MYELITIS ASSOCIATION

2013 DONORS

Jennifer Abbondanza Terry Arens Lester Baxter Mary Abbondanza Lisa Argent Grant and Susan Beard Melissa Abbondanza-Carrell David Argetsinger Jennifer Beason William Abington Donna Armstrong Lisa Beaujon Michele Abod Dave Arnold Leroy and Janet Beck Selena Accardi Julie Asay Marc Becker Anthony Aceti Maureen Ashley Catherine Beers Frederick Achille Susan Ashley Frederick Beiner James and Judith Ackley Bonnie Assink Gerardo Belen Suzanne Adcock Carl Assink Sue Belieki Lauren Adler Rita Auerbach Linda Benaksas Enrique Adsuar Lores Lovelle Augustine Shannon Bennett Edwin Agatep Susan Austin Luana Bennington David Aitken Beth Avni Anisa Benson David and Trish Akouka Anasuya Baddi Tammy Berberich Lori Albano Nader Bahrami Michael Bergeon Michael Albano Sally Bailey Christine Berger Deborah Alexander Lisa Baillargeon Marilyn Bernard Jillian Alexander Jacqueline Baker Amato Bernardo Robert R Alexander Laura Baker Kristy Berndt Gloria Dell Allen Mindy Baker Myrna Bernstein Pamela Allen Yong Mi Baker Robert Bernstein Jean Alletag J. Patrick Ball Michelle Bernten Jeanette Allison Michael Ball Phil and Martha Berry Janet Aloia Melissa Balsitis Stephen Berryhill Kent Aloia Bill Balzer Annika Bertea Carmen Alonso Paul Bancherau Jana Bertkau William Alt Silvia Banda Debra Bertolami Deborah Alterie Thomas Bania Karri and Carl Bertolami Kim Altizer Jim Barclay Marie Bertolami Magaly Alvarez Kathleen Barnaby Rosemary Bertolami Chaim Amir William and Valkyrie Barnes Frank Bertolami Jr. Lori Anderson Katherine Barnett Richard Bestwick Nancy Anderson Jamie and Jordan Barr Michael Beudel Rachel Anderson Darlene Barrett Eleanore Beutel Shane Anderson James Barrow Liz and John Beutel Janet Andrews Kathleen Barry Mark Beylin Lisa Andrews Phyllis Bartiromo Ashok and Usha Bhargava Mark Andrews Laura Bartman Ujwal Bhattad Kristen Andrzejewski George and Shirley Bastounes Laura Bice Scott Andrzejewski Don Batchelder David and Helen Bickel Terry Andrzejewski Suzanne Battaglia Tammy Biddle-Lopes Steve and Melissa Antone Mary Batzel Marc Bieth Robert Appley Susan Batzer Marietta Bigelow Cindy Aprandini Sue and Bernie Bauer Al Biggio Barbara Arens Mark Baumann Alfred and Mary Billow

WINTER 2014 NEWSLETTER PAGE 35 THE TRANSVERSE MYELITIS ASSOCIATION THE TRANSVERSE MYELITIS ASSOCIATION

... Continued 2013 Donors

Brenda Billow Greg Brenner Deanna Calhoun Michelle Binstock Thomas and Margaret Breslin Alice Callahan Dawn Birch Stephen Briggs Donna Callaway Jane Birnbohm Jacklyn Bristol Carol Anne Calvin Arthur Birtcher Robert Britt Nancy Cammisa Jean Biscoe Cheryl Broadhurst Susan Cammisa Penny Black Rudinger Kimberly Brodbeck Josephine Campbell Sandra Blacker Allan Brodie Helene Cantor Jean Blackwell Richard and Dorothy Ling Brookwell- Natalie Caplin Diane Blakemore Skea Kurt Carlisle Terrie Blamer Denise Brouwer Lynne Carlson Kristi Blee Jerry Brouwer Tim Carlson Jo Anne Bleichner Jennifer Brown William Carlson Mary Blietz Joyce Brown Mercedes Carnethon David Bliss Meg Brozny Carol Carney Karen Bobbe Julie Brudnicki Margaret Carney Mircea Bodgan Rebecca Brunetti Christopher Carrell Gary Boersema Pat Brunner Robert and Patricia Carroll Jackie Boersema Tom and Anne Bruno Cinda Carruthers Nathan Boersema Carol Bucciarelli Stacey Cars Steve Boersema Jennifer Buda John and Pamela Carter Kristina Boersma Betty Budnek Steven Carter Kevin Bois Richard Buehler Dorothy Cartwright Samantha Bolger Shari Buetow Kevin and Jen Caster Bill Bollinger Jeanine Bulthuis Candelario Castillo Sheri Bolt Emily Bundy Cristina Castro Sheryl Bolt Teresa Bundy Darlene Caterina Neil Bonavita William Bundy Jane Caton Gloria Boodhan Madeline Buonagurio Linda Caton Donna Bordner Bruce Burdman Cindy Caywood Gordon and Karen Bosch Allison Burger Marge and Jay Ceran George and Carol Bosma Barb Burger Jeffry Ceruti Ed and Francine Botti Mary Burke Diane Cesare Ann Bottino Doug Burklow Lynne Chafetz Holly Bouhanna Tom Burnight Israela Chaleff Brian and Jennifer Bove JoAnn Burrows Jessica Chan Bruce Boyer Linda Burton Katherine Chan Faye Bradbury Valerie Buse Violet Chandler Eldon and Marie Bradley James Buskirk Dennis Chaplin Linda Bradley Josephine Bussiere Gail Chapman Scott and Lori Bradshaw Wayne Byerly R. Gene and Cynthia Chapman Bob and Tish Brafford Johnine Byrer Faith Charlton Kristin Brafford Linda Byron Debbie Chase Deborah Brazzale Kathleen Cacioppo Nancy Chasky Pam Brems Yvonne Cahill Susan Chasteen Barry Brenner Annamarie and Patrick Calendo Lisa Cheke

PAGE 36 WINTER 2014 NEWSLETTER THE TRANSVERSE MYELITIS ASSOCIATION THE TRANSVERSE MYELITIS ASSOCIATION

Linda Cherpeski Patricia Copeland Betty Dayron Renee Chiero Chad Coppes Robin Decorso Jennifer Childress Andrea Cordts Alyssa DeCristofaro-Waller Neil Childress Jr. Matthew Corey Jenny Deets Beth Chimera Yvonne Cotia Charla DeGaetano Jacalyn Chindblom Loretta Cottrell Barbara DeGroy Beverly Christensen Chandice Covington Jeffrey and Vicki Dekoning Debra Christensen Derrick Cox Mario Del Rosario Mitchell Christian Emille and Elvia Cox Diane DelBene Suzanne Christie Jefferson Cox Anthony DeLorenzo Laura Chung Rachel Cox Debbie DeMarco Margaret Chung Eric Crawford Denise DeMarco Joseph and Josephine Ciancio Ellen Creaves Karl Dencker Sean Clancy Naomi Cressman Paula Deneen Pamela Clark Joseph and Miriam Criscione Angela Deneweth Will Clark Mona Croitoru Wenda Denison Susan Clarke Mary Crowe Michael Dennin Barbara Clear Juanita Cruz Tom DePas Thomas Clement Barrett Crysler Debbie DePilla David and Nina Clements Joseph and Mary Ann Csahok Carol Depkin Susan Cleyman Kimberly Cuccaro Daniel and Risa Dera MaryAnn Cline Lori Malloy Cummings Sharon DeReamer Woodie and Susan Lange Robin Cunliffe Lisa Derer Nancy Cochand Nancy Cusack Karen DeRoo Virginia Coffey Diane D’Agostino Dorothy DeStephano Wayne and Peggy Coffield Josephine D’amato Katy Detrisac Bill and Jodie Coffman Joseph Dagostino Sandra Detrisac Allan Cohen Michael and Charlene Dailey Chitra and Martin Devenport Jesse Cohn Mike Dailey William Devery Judy Cohn Sr. Patricia Dailey Betty DeVisser Barbara Cole Marvin Daitch Edwin Devries Lauren Cole Dorothy Daly Jeanne Dewys Sandra Cole Mary Danenhauer John and Cheri Dickinson Scott Cole Carol Daniel Jeff Dickson Lorraine Combs Thomas and Rebecca Danninger Mario and Patricia Didomenico Casey Compton James Darby Leland and Lynda Dierker Aracely and Victor Conde Paul Darling Deanne Dietrich Maria Conde Mary Darr Ann Dillon Mike Conlon Pamela Date Linda Dilts Megan Connelly Gary Davis Sarah Dimond Mary Connolly Keith and Beatrice Davis Kenneth Dimuzio Jaime Connors Owen Davis Erin Dinnie Mike Contrera Stacey Davis Rochelle Diogenes Tim Conway Mary Ellen Davison Susi DiPace Patricia Cooper Ashley Dawson Janice Disanti Carol Copek Robin Dawson Thomas and Claudia Dobbins

WINTER 2014 NEWSLETTER PAGE 37 THE TRANSVERSE MYELITIS ASSOCIATION THE TRANSVERSE MYELITIS ASSOCIATION

... Continued 2013 Donors

Ozgur Dogan Crystal Ellman Michael Firestone Larry Dolan Mary Elswick Charles Fisher Mariane Dominice Renee Elton Courteney Fitzgerald Subhash Domir Kathy Elwood Patricia Fitzgerald Julia Donlen Kevin Eng Stephanie Fitzgerald Cash Donor Holly Engel Daragh Fitzpatrick Constance Donovan Margie Enloe Zachary Flake Mindy Donovan Alvin Epps Leo Fleckenstein William Dorner Laurie Epstein Margaret Fleming Dan and Cathy Dorocak Roland Erhel Barbara Fleming-Claussen Nancy Dove Justin Erickson Marie Flemming Bruce Downey Emma Escobar Adele Flores Tom, Judy and Zoe Downie Gabriel Nido Escribano Michael Flores Mary Downs Jackie Espinoza Dorothy Floyd Jan Dozeman Mark Esselman Thomas and Amy Foley J. Drake Alan and Lucy Estes Steven and Maryann Ford Milou Daniel Drici Maria Estrada Stephen and Debra Fortino Henrietta Driesenga Claire Evans Irene Fortunato Shannon Drinkwine Jan Evans Sharon Foust Joseph Druker Robert Evans Vincent Fowler Susan Duff Darrell Everett Carmen Fox Chris, Ann and Thomas Duffy Carol Ewan Donna Fox Margaret Duffy Theodore Ewing Linda Fox Mariann Dugan K. Fahey Steve Fox Lisa and Jon DuMars Jeannine Falino David Fox LLC Danelle Duncan Donna Famiglietti Anne Foxenburgh Celeste Dunn Gary Fanger Barton Franc Stephen Dunn Lori Farabow Franco Franchina Kathy Duquette Claudia Faraci Ira Frank George and Rita Durgin Daniel Faraci Frank Franks Elizabeth Duvernois Rosanne Faraci Cara Frederick H. Michael and Sandra Dwares James Fareri Ellie and Olivia Frederick Mike Dyer Linda Farley Dawn Freeman Clarice Dzurilla Connie Farrell Donna Freeman Janet Eastman Rose Fehn Jessica Freeman jacqueline Ebben Eileen Feldman Tillie Tamar Freeman Pete Eckel Joan Fenner Allan Freiman Amy Eckland Sucila Fernandes Deanne Friedman Carly Edgar Galip and Rabia Feyzioglu Sadie Friedman Denise Edgeworth Ruth Figueroa Susan Friedman Heather Edwards Lori Fillman Judy Friesen F. Joseph Ehrhardt David Findley Tammy Fritze Maryann Eleuteri Nancy Finegood Patrice Fronstin Wendy Eller-Rolston Laura Fineman Fruchtman and Catarelli Dianne Elliott Dick Finney Larry Fuerst Nina Ellis Kathryn Fiorella Louis Fugere

PAGE 38 WINTER 2014 NEWSLETTER THE TRANSVERSE MYELITIS ASSOCIATION THE TRANSVERSE MYELITIS ASSOCIATION

Lauren Fuhrman Lynn Giesler Robert and Sandra Gregg Bob Fulghum Kristi Gilbert Kathleen Griffin Charles Fuller Neil Gilbert Gerald Grilec Elaine Furniss Mary Gill-Thornton Betty Grogan Alan and Valerie Fyvie William Gilliland Jr. Dan Gruby Laura Gagala Randall Gilmer Ronald and Carol Gruenberg Brian and Anne Gahman Louis Giorno Grace Guas Andrew Galanski Brenda R Gleason Carrie Guerriero Janis Gallagher Elyse Glenn Nancy Guerriero Robert and Candace Gallo Kevin and Natalie Glenn Jan Gunneson Mary Galvan Scott Glickman Peter Gustafson Patricia Gandsey Catherine J Gloeckler Debby Gutzwiller Frank Gargaro Morton Glovin Dale and Robin Haas Geri Gargaro Howard and Karen Gochberg Ruth Habben Neil Gargiulo Jennifer Goewey Ellen Haberlein Michael Garrigan Jillian Goldfluss Mary Hafertepe Russell Garrigan Neil Goldfluss Arvid Hagglund Charlotte Garven Marty and Louise Goldman Olimpia Haight Abby Gase Janice Gont Soheila Hajizadeh Tracey Gaslin Nancy Gonzalez Catherine Hake Anne Gasperec Denise Goodrich Maureen Hallagan Andrea Gass Joseph Goodsell Shauna Hamby Kim Gatelein Francie Gorowitz Gary Hamilton Todd and Rosalind Gauchat Richard and Keri Gorsky Jeanne and Thomas Hamilton Allison Geenen Andrew Gorter Matthew Hamilton Charles and Julie Geenen M. Gott Collins Rebecca Hamilton Roy Geeo Carol Gould James Hammer Thomas Geer Mel Graben Kathy Hanchek H. Arnold Gefsky Heidi Graham Sally Hanes Dianne Geissler Melinda Graham Erin Hannan William Gela Brian Grana James Hannan Phil Gelber W.R. and Susan Granberry Rita Hannan Amy Gennaro Adele Grattand Ursula Hannig Leonard and Paula Genova Lisa Graves Raymond and Susan Hansen Laura George Penny Gray Mike Haracz Pat Gergely William and Lori Gray Janet Hargrove Arlyn Geruc Janet Grebner Kevin Harper Scott Geske Lisa Green Bill and Barbara Harris Susan Getz Owana Green Debra Harris Ann Getzinger Cindy Greenbaum Michael and Michele Harris Franco Giannese Benjamin Greenberg Frankie Harrison Demi Giannopulos Judith Cook Greenberg Kenneth and Denise Harrison Leona Gibboney Bubba Greene Kim Harrison Cheryl Gier Elaine Greene Ilona Hart Patricia Giese Jessica Greenfield Kimberlee Hart Michelle Giesey Kimberly Greer Colleen Harte

WINTER 2014 NEWSLETTER PAGE 39 THE TRANSVERSE MYELITIS ASSOCIATION THE TRANSVERSE MYELITIS ASSOCIATION

... Continued 2013 Donors

Farryn Harte Mary Lynn Hodshire Valerie Irizari Michael Harte John Hodson Marsha Iwan Rev. Paul Harte Mimi Hogan C. Wisniewski and J. Anderson Betty Hartigan Garrett Hoge Doris Jackson Roben Hartman Jessica Hoge Malona Jackson Brittany Harvey Jim, Linda and Tyler Hoge George Jacobs Marian Hassevoort Paul Hoge Kandice Jacobs Ronald and Wanda Hassevoort Wayne Hoge Lauralee Jacobs Jacob and Angela Hauck David Hogin Michael Jacobs Joy Hayes Edward Hoglund Cheryl Jason Linda Hayes Linda Holbrook Lucille Jaworski Cheryl Hays Neville and Hyacinth Holder John Jefferies James and Dianne Heath Susan Hollander Jacquline Jeffery Jo-Ann Hedderich Jeffrey Holman Bob and Angie Jenkins Ann Heinson George and Ellen Holmes Judith Jennings Barbara Heinz Kevin Holston Lisa Jennings Lorie Heller-Smith Meghan Holston Denice Jeschke David Helman Patty Holston John Jewett Ronald Helwig J David Holt Mary Ann Jimenez Vivian Hemphill Suzan Holt Daniel Joba Nancy Henderson Jean Homenick Burton Johnson Meagan Hendricks Reeves Honey Delores Johnson Kathy Hennig Sandra Hoover Judith Johnson Mary Kay Henson Pamela Hopkins Keith Johnson Thomas Heraty Barry R Horek Kevin Johnson Tiffany Herbig Jean Horn Meliesa Johnson Travis and Patty Herd Linda Hoss Olenthia Johnson Marguerite Hernandey Matthew and Wendy Hostetter Sayra F Johnson Eric Herz Chris and Trip Howell Kris Johnston Frances Herz Lisa Howell April Jones Scott Herz Edward and Carole Howley Helina Hee Jung Yoon-Adams Yoko Hescott Alyson Hu Andrew Junikiewicz Rachel Heston Eric Huang Mary Jane Jurofcik Andrew Hewitt Susan Huch J. Kane Richard Hickey III Julie Huels Tobe Kanon Carolyn Higgins Dorothy Huff William Karis Lisa Hildebrand Linda Huggins Roberta Karpel Tanya Hileman Ruth Huisman Fancher Marilyn and Laura Kates-Glenn Shannon Hill Denis and Margaret Hutchings Bryan Kaurich Sunny Hill Jeffrey and Jean Hutchison Joan Keegan Sherrie Himmelfarb Rachel and Ronald Hutton Sr. Marcia Keener Claudia Hindo Jemini Ignacio Joseph and Holly Keffer Lorna Hiney Cheryl Imboden Anna Kehoe Gail Lee Hirsch Jeffrey and Christine Infalt Kimberly Kellett Alvarez Ann Hittner Teena Ingham Erin Kelmereit JoAnn Hobson Lillian Inman Elizabeth Kelsey

PAGE 40 WINTER 2014 NEWSLETTER THE TRANSVERSE MYELITIS ASSOCIATION THE TRANSVERSE MYELITIS ASSOCIATION

Mary Kemp Maria Koszewski Kim Lavin Therese Kendrick Adam Kotlar, LLC Elizabeth Lawson H. Kennedy John and Tracey Koutsogiani Brian and Rhonda Layman Tracey Kennedy Gail Kowalczyk Bill Leach Ann Sage Kent Marilyn Koziol Gerard and Nancy LeDoux Scott Kent Teresa Kragnes Lisa Lee William Kent Cecilia Kramer Henry Leeds Laura Kent-Jones Elaine Kramer Debbie LeGare Mary Kercher Harold Kramer Jared and Rebecca Lehman Thomas Kerney Karen Kraynak Bettina Lemmon Sabrina Kerr Janet Kreger Susan Lempke Christopher and Cynthia Kessler Kathi Kreklow Timothy Leonard DMD Aftab and Rahimunisa Khan Nathan Kreye Dianne Lepech Joseph and Kathryn Khoury Colleen Krizek Katrina Lesher Mary Ruth Kieffer Cheryl Kuchler Dennis and Linda Leuthauser Alan Kiehn Kimberly Kuehn Crystal Levy Charlene Kiniyalocts Keith Kuhn Diane Lewis Suzanne Kinkle Candace Kuhns Elizabeth Lewis Mary Kinney Jill Kullen Nancy Lewis Donna Kiolbassa Don Kullgren Tammy Lewis Anne Kiraly-Alvarez Linda Kuna Jules Lieberman Joe Kirbo David Kurtz Fran Liebowitz Mike Kirk Franklin Kurtz Bryan Lijewski Valerie Kittner Anne Kurtzman Jaime Liles Bridget Klapperich Nicole Kuzmin-Nichols Margaret Lindberg Marion Klaus Teresa Kyser Jackie Line Matthew Klein Robert LaForge Kathleen Linehan Mary Kleyn Jose Lagahit Linda Linenfelser Bernhardt and Susan Klippel Joseph Lagahit Paul Linsk Katie Kluga Joseph and Roslyn Lagrossa Lynne Lipper Tim Knaplund Miriam Lakes Emilia Listopad Alan and Virginia Knight Brad and Tanya Lamberts Alan Little Harry and Sheila Knopke Bruce Lamm Maureen Littlefield Anita Knotts Carla Lampsa Richard LoBianco Daniel Knoup Jackie Landry Shirley Lockwood Fred Knuhtsen Carol and Cheryl Lange Colleen Loftus Karl and Cara Knutson John and Jacqueline Lange Gloria and Rich Lombardi Ruth Knyfd Scott Lange Leticia Lopez Thomas Koerner Irk and Heather Laninga Tim and Laura Lopez Michelle Kokalj Amy Lanphear Simone Lord Georgette Kokinda Michelle Laranko Robert and Jacqueline Loth Mary Kollmansberger Debra Larch Virginia Lott Gregory Konya Tina Lastovich Marlene Loula Midge Korczak Barbara Lathrop Jessica Lovelace Mark Kornago Susan L and Scott W Lathrop Janaye Lowe Sharon Kossman Kimberly Latimer Helen Lowery

WINTER 2014 NEWSLETTER PAGE 41 THE TRANSVERSE MYELITIS ASSOCIATION THE TRANSVERSE MYELITIS ASSOCIATION

... Continued 2013 Donors

Mary Lowry Garry Markvluwer James McIntyre Michele Ludwig Sheila Markvluwer Robin McKelvey Carleen Lunsford Martha Marotta James and Kristine McKinley Angela Lykos Karen Marshall Carol McLaughlin Sarah Lynch Robert and Susan Marshall Kelly McLaughlin Deborah Lynn Shannon Marshall Cynthia McLean Gay Lyons Jennifer Marthinsen Cindy McLeroy Larry Maat Amy Martin Frank McNally Kirk Macallister Cynthia and Jesse Martin Richard McNeer Berta Machado Hugh Martin Daniel Mcnulty Cheryl MacInnis Joan Martin Brian McPartlin Toni MacIntyre Nicole Martinez James McPherrin Michelle Mack Wilma Martins David and Dolores McQuaid Courtney MacKeller Tarah Martos Patricia Meadows Nancy Mackenzie Martha Mascia-Strickler Barbara Mech Diane Mackin Albert Mast James Medin Jennifer Madden David Matelski Melissa Medina Lori Madden Heidi Mathey Jennifer Meeker Rose Madden Kristina Matouk Lisa Meeks Charlene Madurski Gerrie Matthews-Whitfield Esther Meeuwenberg Craig Madurski Joe and Maureen Matula Jodi Meeuwenberg Paula Maggio Carl Maves Randall Meeuwenberg Jill Magill Barbara May Ted Meeuwenberg Laraine Mahshie Stephen Mayhew Sheila Meiste Megan Maida Carol Mayka Wendy Melcher Michael and Betsy Maiore Angela Mazzoni Keonna Mercer Robert and Linda Malecky Robert McAllister Jean Mertens Deborah Malone Peter and Wendy McBrair Lawrence Messinger Susan Mandel William McCabe June Meyer John and Joan Mangia Valerie Mccammon Eva Miangolarra Vincent Mangia Maria McCarthy Rhonda Michel Debra Manion Colleen McCay Thomas Michelmore Paul and Imogene Mann Linda McClees Peggy Michels Tameka Mann Melinda McClement Kathryn Miehl Carrie Mann Papay Mark McCloskey Christine Mihalopoulos Tonya Mannes Catherine McClure Stefanie Mihalopoulos Tracy Manning Lauraine McCommon Sharon Mihm Eileen Maranuk Erica McConnell Christine Mikuta Kirby Marchand C. McCrory Dawn Milhous Amy Marciniak Jim McDonald Duane Miller Renee Marconi Roxanne McDonald Esther Miller Jeff Marini Rosemary McDonough Harriett Miller Robert and Nancy Markey Herschel McFarlen James Miller Evelyn Marks Ruth J McGee Karen Miller Stephen Marks Paul McGrory Margaret Miller Susan Marks Susan McGrory Robert and Gail Miller

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Tracy Miller Harold and Lynn Nearman Daniel Ortegon William Miller Lloyd J and Elizabeth Nees Eva Ortegon Janet Millis Lauren Negro Joseph Ortegon Sheryl Millman April Neill Nora Ortegon Gail Milner Sue Nellis Joan Osberg Brenda Mims Alicia Nelson Lois Osborn Jan Mirisola Anita Nelson Jen’nea Osei Darin Moffett Caroline Nelson Mary Anne O’Toole Tamara Mohr Martha Nelson Mary Ozzimo Dorothy Monahan Nicole Nelson Dexter and Dorothy Packard Laurie Moody Paula Nelson Gregory and Debra Paddack Alicia Moore Rosemary Nelson Margaret Padilla Jeffrey and Theresa Moore J. David Nemeth Joanne Pajcic Marie Moore Amanda Nichols Dominic and Kristin Palacios Stephen Moore Janice Nichols Joseph Paladino William and Marianne Moore Rick Niekamp Michael Paller Lucille Moran Ann Nielsen Anna Palmer Joyce Mordhorst William Nielsen Maureen Panattoni Diane Morefield Sandy Niemi Margaret Panzarella Anthony Moreton Nancy Nienhuis Joyce Pappas Earl Morris Jacqueline Nieves Kathryn Pappas Elizabeth Morris Vin Nigara Barbara Parker John Morrow Bonita Nolan Amy Parsons Margaret Moser Nancy Noonan Catherine Pasinski Diane Moshman R.J. and Moon Nord Michael and Amy Paver Paul Moskowitz Cara Nordberg Megan and Robert Paxton Maureen Mosquera Jenny Novak Michael Payne Melissa Mossesso-Rousseau Amanda Nyhof Margret Paynor William and Hannah Mountain Elizabeth O’Brien Kelly Peasley Marietta Mowry Cindy O’Connor Mary Ann Pellegrino Nicole Mujica Katina O’Connor Norm and Gayle Peltier Sussi and John Mulcahy Pamela O’Connor Laurie Pelton Patricia Mulder Terry O’Connor Edwin Pena Lynn Munson Chris O’Dell George Perdue Bruce Murchison Pam O’Hara Kathleen Perez Kay Murray Amy O’Keefe Robert Perkaus Barry and Alice Murray-Chamberlain Anarose O’Young Sue Perkins Kathleen Myers Gaby Ochsenbein Amy Perrin Lindsey Myers Marcel Ochsenbein Christina Perros Peggy Myers Nina Ochsenbein Roger and Rebecca Perry Aino Naeris Vera Ochsenbein Roxana Perry Bonne Narducci Janice Odiaga Reid and Fran Peschel Domenic and Josephine Narducci Mary Jo Olszewski Vanessa Pesec Marjorie Narducci Nickie Oppermann Stephanie Peters Jenny Nash Barbara Orchard-Carr Margaret Peterson Jamie Natter Philip and Marilyn Oreste Sue Petrelli

WINTER 2014 NEWSLETTER PAGE 43 THE TRANSVERSE MYELITIS ASSOCIATION THE TRANSVERSE MYELITIS ASSOCIATION

... Continued 2013 Donors

Tom and Norma Petrosewicz Michele Pufahl-Burns Aimee Rink Dave Pezda Cathy Purdy Natasha Rippel Nancy Caroline Phelps Mary Lou Qualtrough Peter and Vivien Riseborough Beth Phillips May Quijano Ruben and Ana Rivera Edward Phillips Jeff Quinn Ann Rizzolo James Phillips Matthew Quinn Gary Rizzolo Kenneth Phillips Dennis Rabalais Norma Rizzolo Mary Ann Phillips Melanie Radkiewicz Jeanine and Eric Robart Doris Phinney Leslie Rae Jason Robbins Marinelle Phras Tom Rafferty Jordan Robbins Susan Pierson Rama Rajagopalan Sharon Robbins Kevin Pigford Cynthia Ranii Lisa Roberts Debra Pikulski Mary Rastelli Nanette Roberts James and Wendy Pilger Patrick Rastelli Adam and Ashley Robertson Vicki Pinder Janice Rastelli-Minor Constance Robinson Sharon Pipes Ron Raulerson Don and Bonnie Robinson Victor and Donna Pirrami Charles Ravenscraft Louise Robinson Cynthia Pistella Jr. Barbara Ray Sharon Robinson Jack Pitts Patricia Ray Susan Robinson Oscar and Betty Ploss Zoe Ray Ann Roccanova Amy K Plunkett Lora Reardon Kathy Rodgers Donna Poellet Patricia Rech Steven Roman Dee Poggi Nora Redmond Margaret Romberg Nancy Poleman Cledith Reed Mary Romoski Joseph Polidor John Reed Robert Romps Gretchen Poliero Celista Reese Lisa Roossien Jill Polistico Donna Reeves Vito Roppo Gary Pollack Mario Regala Evelyn Roscoe Karen Pollack Karen Reid Michael Rose Lisa Pollack Connie Reineberg Ruth Rosen Marcille Pollack Eric Reitz Alan Rosenberg Frank Ponsi Jaimie Rendall Linda Rosenbush John and Kathy Popovich Jane Respess Susan Rosenlof Ron Popp Brenda Reynolds Nancy Rosenzweig Bob Port Christine Rhoades Stuart Rosinger Lindsey Port Sheila Rhudy Catherine Rosky Natosha Porter Jereen Rice Jan Rosow Jodi Posner Rhonda Rich Anne Ross Doris Poss Donna Riddle Zach Ross Chris and Michelle Powell Linda Ridley Clarice Rossi Evelyn Powers Tracee Ridley Amy Rotchford Irene Powers Teresa Rienzie Brian Rotchford Alice Pritchett Amy Rigg Joseph Rotchford Thomas Pronesti Joe Riggs Esther Roth Tony Przybylinski Joy Riley Magdalene Roth Melissa Puente Mary Rinehart Dawn Rotman

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Reg and Lynne Rousseau Jill Scheerhorn Tessa Shanks Mary Rouwhorst Janis Scher Andrea Shannon Michael Rowland Raymond and Meghan Schieferecke Diane shannon Anita Royal Lina Schiess Dennis Shaw Barbara Rozul Judah Schiff Karen Sheehan Emily Ruane Wayne and Kimberly Schimpf John Sheldon Linda Rubarski Carol Schlegel Ken and Loye Shelton Rebecca Rubnitz Ladd Schmitt Doris Sher Stewart Rudy Sheri Schneider Rhianna Sherlock Leslie Ruffing Matt Schnell Bill and Vickie Sherman Laurie Ruhnke Herman and Jeanne Schob Robert and Joni Sherman Marlen Ruiz Jennifer Schottler Shantel Shimkus Anne Rule Barbara Schramm Stacey Shonkwiler Jessica Russell Kathleen Schramm William and Sandra Short Don and Lynne Ryan Martha Schramm Laurie Siebert Ellen Ryan Christine Schroeder Anne Sieck Thomas Sabaitis Cathy Schuhlein Daniel and Marcia Siegel Geraid Saccomanno Jerome Schulte Sanford and Pauline Siegel Gerald Saccomanno Helen Schultz Dan and Denise Sikorski John Saccomanno Sue Schurr Marcus Simeone Sal Saccomanno Kateri Schutt Carmen Simion Sheila Saccomanno Kristopher and Jamie Schutz Diane Simpson Denise Sachau Alan Schwalbe Thongsy Singvongsa Renee Sachs Terese Schwartz Barbara Sipe Adrian and Ines Sahagun-Bahena Sandra Scialabba Astrid Sipos Brooke Sajenko William and Glenda Scoggins Nicole Sitler Angela Saldana David Scott Susan Skaggs Debra Samborski Melanie Scott Allison Slapnicka Priscilla Sanchez Douglas Scrivner Annette and Gene Slaughter Jerry Sandau Denny Scully Jim Slaughter Theresa Sandberg Farnaz Sedghi Sabina Slavin Starr Sanders Amy Seeger Robert Slayton Lisa Santa Croce Martin Segal Lanny Smaagard Judy Santiago Miki Segal Kathryn Smay Marie Sargent Carol Seidl Michelle Smay Lisa Sarullo Bob Seiffert William Smay Jared and Jeannie Sass Renate and Johann Seitz Roger Smead Barbara Sattler Jennifer Selby Erica Smith Brian Saucier Susan Sell Jonathan Smith Harold Saylor Terri Seltz Kristel Smith Bob Scafidi Ron and Diana Seroski Linda McCoy Smith Hayley Scharping Marvin Serota Mary Smith KImberly Schauer Beth Shadur Mary Louise Smith Nicoletta Schauer Betty Shaffer Nancy Smith Hyman and Perle Schechter Cindy Shahkarami Stephany Smith Pamela Schechter Gayle Shampine Barr William Smith

WINTER 2014 NEWSLETTER PAGE 45 THE TRANSVERSE MYELITIS ASSOCIATION THE TRANSVERSE MYELITIS ASSOCIATION

... Continued 2013 Donors

David Smits Andrew Stern Carolyn Taylor Angela Smoger Kenneth Stern Christine Taylor Jill Snyder Thomas Stern Keith Taylor Denise Soderholm Deanna Steuernagel Patricia Taylor Jay Solow David Stewart Richard Telander Ann Sorley Janice Stickles Janis and Angel Telles Judie Spadafore James Stitch Jr. Sarah Tenesaca Andrew Spaeth Gary Stockman Sarajane Termaat Brenda Sparks David Stockson Lori Tesauro Geraldine Spatara Stephen and Michelle Stoltz Laurie Teusink Allison Spector Dave Stoppa Brian Theiler Patricia Spence Nancy Storelee Ronald Thelin Lori Spencer Kenneth Storey Gary Thomas Bob Spielman Lee-Anne Stossell Russ Thomas Peter and Marilyn Spielman Danny Stotler Thomas Thomas Ralph Spielman John Stover Sharon Thompson Susanne Spielman Janice Stow Helen Thomson John and Rose Spoolman Robert Strabbing William Thomson Scott Spoolman Dorothy Stream Jeanne Thorpe Terri Springer Linda Streck Timothy and Susan Tierney Angela St. Souve Charles and Sally Streeter Sheila Tillman Karen Staab Tom Strikwerda Jerrie Tittle Sharon Stachecki Ashly Stromberg Brian Tognetti Michael Stafford Christine Struchen Albert Tolle Stephanie Stainback Mary Stup David Tomko Tara Stallfort Ted Sturm Katherin Tonelli Wanda Stanfield Elizabetta Suarez Schneur Toporowitz Adam Stanger Vik Subbu Bill and Rita Torok Christine Stanley Brian Sullivan Joann and Jim Torpey Christina Stansbury Daniel Sullivan Marie Torre Nancy Staples Nicole Sullivan Dana Tosh Melinda Stapleton Rebecca Sullivan Maria Tovar Aldona Starkus Albert Summerville Allan Tran Sharon Starr Laurie Sunshine Charles and Mary Ann Travisano Elizabeth Starzec Chad Sutton Doris Trax Jen Starzec David Sutton Bianca Trejo Kathryne Starzec Barbie Svenson James Treleaven Donna Staunton William and Karen Sweeney Marlena Trevino Miller Stear Nancy Wweetman Dyan and Bill Trombello Donald Stebleton Penny Swift Mike Trombley Carol Stehly Becky Szafranski Sherry Trotta David Stein Eva Szymczak Sylvia Trudeau Robert Stein Karen Tabbert Julia Truettner John Steiner Heather Tan Barbara Tsutsumi Carla and William Steinmetz Charles Tanner Theresa Tubergen Deborah Stephens Carol Taylor Kenneth and Nancy Turbert

PAGE 46 WINTER 2014 NEWSLETTER THE TRANSVERSE MYELITIS ASSOCIATION THE TRANSVERSE MYELITIS ASSOCIATION

Mary Turner Cecile Waltz Mary Anne Winters Dale Tyson Margherita Wang Catherine Witt Walter and Andrea Unterbrink Georgan Watrous Laura Wodka Susan Uttal Priscilla Watts Sheila Woerner Oscar Vaca Fitcher Weathington Micki Wojtanek Clint and Desiree Van Blaricom Carlye Weber Mary Wolak Jim Vandwol Charney Weber Andrew Wolk Donna VanAssen Marcia Weber Yvonne Wong Lolla Vandeberg Janice Weiner Deborah Wood Heidi VanDenBerge Lois Weintraub Scott Wood Madison VanDenBerge Andrea Weisgerber Kevin Woods Mary VanderKolk Deborah Weiss Robert Woodworth Barb VanderVeen Catherine Weissensee-O’Brien Charles Woolard James Vandervort IV Merle Weitz LeighAnne Wormmeester Kim VanSolkema Thomas and Sophie Wellington Richard Wright Maribelle Vasavanont Nancy Wellons Forrest Wylie Diane Vecchione Adrianne Wells Loredana Yamada Irene Vega Ralph Wells John and Gina Yates Donna VerDuin Zachary Wessler Nicholas Yatrakis Armando Vilches Kurtis Westemeyer Matt Yount Marie Villanueva Barbara and Stanley Weston- Anthony Zamarro Ellen Vinzani Sundstrom Juan Zamora Carol Vogeltanz Jeanne Westrick Thomas and Bretta Zamzow Sally Vogt Jill Whalen Sylvia Zawierucha Kathy Volz Jim Whalen Dick Zemba Albert and Virginia Vonhof Morris Whitcup Crystal Zemlin Joan Vonnot Albertine White Pamela Zemlin Patricia Voorheis Lezli White Joseph and Francine Zeppetella David Vos Steve White Curtis Ziemba Gary Vreeland Tiffany Whitney Robert Zientara Alexis and Victoria Wadowski Dolores Reed, Tom and John Wichman Diane Zimmer Maureen Wadowski Tom and Jerrie Wichman Ken Zimmer Gretchen Wagner Anita Wieczorek Ronald and Mary Zimmer Joan Wagner Gregory Wiegand Rose Zimmer Mary Wagner Lindsey Wiegand Frank Zisa Linda Wakefield Mary Wilkinson Norbert and Kathleen Zook Wendy Wald-Bernstein Steven Wilkinson Lanny Zuckerman Jeffrey Walker Michele Willard Rachelle Zukerman Linda Walker Rebecca Williams Caroline Zurawski Lyn Walker Mary Jo Willis Florence Zuvich Michael Walker Ada Wilson Wayne and Darlene Zweig Terese Wall Lashaundra Wilson Donna Andrea Wallinga Nancy Wilson Webster Law Group Beatrice Wallish Diane Wilson-Kutcher Rares Pamfil Carole Walsh Audrey Windisch Lubin James Geralynn Walsh Linda Winge Deborah and Michael Capen Susan Walters Patricia Winter Roberta Pesce Robert Ruetz Family

WINTER 2014 NEWSLETTER PAGE 47 THE TRANSVERSE MYELITIS ASSOCIATION THE TRANSVERSE MYELITIS ASSOCIATION 2013 ORGANIZATIONS

Trust Wells fargo Community Support Imperial Cleaners Nzipunksiam Campaign Acrisure LLC A.M.P. Appraisals, Inc. Western PA Sports Med & Rehab Fusion Incorporated Network Executive Software Vadnais Hts. Firefighters Association Georgianna United Methodist Church Riddle & Sons Guns Charitable Gambling Henkel Corporation Williams Offroad Lighting Portsmouth Social Security Office Metal Flow Corporation Harris IT Services University Hospice Midwest Orthopaedic Consultants Zimmer Concrete & Excavating Valley Honda S. Mechanical Inc. Greenfield Senior Center Zimmer’s Service Center, Inc. Schlauch Bottcher Construction, Inc. ASI Investigations, Inc. Barber Ford Schramm Farms and Orchards Fortune Brands Home & Security Dean, Ringers, Morgan and Lawton HNI Risk Services of Michigan Freedom to Live PA Aetna Foundation Jimmy D’s Custom T’s Girlfriends Fit Club LLC Coloplast Men’s Bible Class HL Bolkema Decorating FLIR Commercial Systems, Inc. Mertens Dental Associates New Directions Construction Services Foundation for the Carolinas Robert J. Smith Funeral Homes, Inc. Riverside Landscape Contractors, Inc. Mr. & Mrs. William King Yeta’s, Inc Salt & Pepper Pub and Grill, Inc. Porosity LLC Parrot Head Club of Connecticut Scheck & Siress Prosthetics, Inc. Buckeye Pipeline Company Athletico Ltd. Schwab Charitable Fund Cervi Cattle Company Attorneys Jo Ann Hoffman & Vance Shield Healthcare Boeing Company B. Moore, PA State Farm Insurance Companies Herbert O. Wolfe Foundation Barney & Barney, LLC Vander Giessen Nursery, Inc. The Roles Family Foundation Economy Plumbing, Inc. The Generations Class Biogen Idec IBM Illinois Tool Works Foundation Christopher Reeve Paralysis Mathers Construction Team Texas Roadhouse Holdings, LLC Foundation Mountain Park Counseling Center Badolato Family Health Gardner Grout Foundation Opeka Auto Repair Company, Inc. Designers’ Press Louis P. Singer Fund, Inc. Pew Charitable Trusts Everyday ABA, LLC. South Camen Iron Works, Inc. Geske Management, Inc. DBA 2013 SPONSORS

Restorative Therapies, Inc. ABC Home Medical Supply, Inc. Kennedy Krieger Institute Kronus, Inc. Coloplast Biogen Idec Chugai Pharma USA

PAGE 48 WINTER 2014 NEWSLETTER THE TRANSVERSE MYELITIS ASSOCIATION THE TRANSVERSE MYELITIS ASSOCIATION 2012 DONORS

Jennifer Abbondanza Frederick Beiner JoAnn Burrows John Abbondanza Benjamin Beirs Wayne and Betty Byerly Melissa Abbondanza-Carrell Linda Benaksas Johnine Byrer Anthony Aceti Luana Bennington Carol Anne Calvin Jack and Julie Adams Kristy Berndt Nancy Cammisa Chip Agapi Richard Bestwick Susan Camp Michael Akins Charles Bethea Shannon Campbell Deborah Alexander Michael Beudel Erma Candelori Robert Alexander Eleanore Beutel Anthony Cangialosi Sarah Alexander Elizabeth and John Beutel Carolyn Cannuli Gene and Judy Allen Kerry Bill Natalie Caplin Pamela Allen Alfred and Mary Billow Tracey Caputo Jeanette Allison Debra Birkenstamm Carol Carney Janet Aloia Jane Birnbohm Stacey Cars Jeffery and Kim Altizer Robert Bitters Steven Carter Chaim Amir Ruth Black Deborah Casey Stan and Judy Amsterdam Jason Blackmore John Catania Jim and Lisa Andrews Jean Blackwell Louis Cavaliere III Joan Anglin Jim Blankenbaker Diane Cesare Jerilyn Angotti Evelyn Blankenship Lynne Chafetz Melvin Appell Marvin and Helene Blaustein Israela Chaleff Jonelle Aquilino Aurore Bleck Francesco Checchi Joseph Aquilino Judith Lyon and Ron Bloom Linda Cherpeski Adam Arehart Lyn Blum Susan Chewning Donna M Armstrong Anne Bodman Beverely Christensen Dave Arnold Jessica Bollinger Gary and Debra Christensen J.J. Ashcroft Nora Bollinger Vincent and Michele Cirillo Melvin and Carmen Auerbach Michael Bond, D.D.S., P.C. Maria Cistallo Rita Auerbach Douglas Borses Barbara Clabby Ira Back Daniel and Madeline Bounagurio Bridget Clabby Chris and Donna Bain Brian and Jennifer Bove Will Clark Ashley Baker-Van Dyken Maggie Bowie Kester Clarke Cindy Baldwin Sharon Bowman Thomas Clement J. Patrick Ball Sharon Bowman MaryAnn Cline Nancy and Joseph Baltz Bruce Boyer Allan Cohen Sharon and James Barclay John Brandt Kathy Cohen Bruce Barker Marjorie Braun Kathy Colavita William and Valkyrie Barnes Chad Bridges Barbara and Daniel Cole John Barragry Sandra Brown Glenn Colin Darlene Barrett Julie Brudnicki Barbara Collins R. J. Bartholomew Carol Bucciarelli Alice Connelly Don Batchelder Gail Buch Patricia Cooper Randi Bates Jennifer Bullard Carolyn Copple Hitt Susan Batzer Barb Burger Ann Cosgrove Thelma Baxley Paul Burkitt Carmen Cottrell Lester Baxter Shirley Burnett John and Mary Craven Mindi Behrens Tom Burnight Elizabeth Creary

WINTER 2014 NEWSLETTER PAGE 49 THE TRANSVERSE MYELITIS ASSOCIATION THE TRANSVERSE MYELITIS ASSOCIATION

... Continued 2012 Donors

Elisa Crockett Barbara Elliott Andrea Fuse Rebecca and David Crosby Ralph and Mary Elswick Brian and Anne Gahman Barrett Crysler Alvin Epps Janis Gallagher William Jack Cumper Laurie Epstein Robert and Candace Gallo Robin Cunliffe Eugene Ertle Jr. Mary Galvan Jennifer Curtin Thomas Euler Patricia Gandsey Dorothy Daly Claire Evans Neil Gargiulo Mary Danenhauer Jan Evans Mary Gase James Darby Young Family Anne Gasperec James Darby Deldra Fanel Patricia Gaudet Pamela Dardik Elaine Fanjul John Geary Glen and Jolene Davis James Fareri Valarie Gebhart Robin Decorso Linda and Lee Farley Roy Geeo Levi Defriese Jr. Barbara Farrell H. Arnold Gefsky Jeffrey and Vicki Dekoning Michelle Feese Dianne Geissler Diane DelBene Greg Fegley Phil Gelber Arthur Dell Rose Fehn Shirley Germenis Deborah DeMarco Eileen Feldman Arlyn Geruc Carol Depkin Galip and Rabia Feyzioglu Susan Getz Dorothy DeStephano Geraldine Fierro Silvia Giambruno Angela and Tim Detoni Lori Fillman William Gilliland Jr Chitra and Martin Devenport Mary Eve Finestone Daniel Gillin William Devery Gloria Fink Jean Giordano Hoffman DiMuzio Leon Fink Louis Giorno Thomas and Claudia Dobbins Kathryn Fiorella Elyse Glenn Subhash Domir Marjorie Fischer Thomas Gnewuch Daniel and Catherine Dorocak Charles Fisher Jerry and Donna Goldman Nancy Dove Patricia Fitzgerald Marty and Louise Goldman Bruce Downey Stephanie Fitzgerald Ben and Carol Goldstein Geri Dubrow Bridget Fitzgerald Janice Gont Patricia Dudek Rita Fitzgerald Chaidy Gonzalez Anita Dudley Theresa Fitzgerald M. Gott Collins Jerry and Trudy Duffman James Fitzroy Steve Graham Chris and Ann Duffy Leo Fleckenstein Christy Grant Lisa Dumars Marie Flemming Rosalie Green Danelle Duncan Adele Flores Benjamin Greenberg Desiree Dunne Brandy Ford Judith Cook Greenberg George and Rita Durgin David Fox LLC William Bubba Greene K.S. and D.J. Dvorak Father Mark Fracaro Jessica Greenfield Robert Ebel Mary Jane Fransen Betty Grogan Peter Eckel Tillie Tamar Freeman Wendy Blasser-Gruby and Danny Joan Eckert Ingrid French Gruby F. Joseph Ehrhardt Jan Fried Marianne Guida William Ehrke Susan Friedman Milburn and Sandra Guillory Maryann Eleuteri Richard Frisch Michael Gum Debbie Eller Patrice Fronstin Ellen Haberlein Wendy Eller-Rolston Elaine Furniss Raymond Hall

PAGE 50 WINTER 2014 NEWSLETTER THE TRANSVERSE MYELITIS ASSOCIATION THE TRANSVERSE MYELITIS ASSOCIATION

Maureen Hallagan Leslie Irwin Cecilia Kramer Brandon and Susan Hamilton Dinaz Italia Harold Kramer James Hammer Marsha Iwan Richard and Bonnie Kramer Lisa Hammer Rosemary Jack Terry and Wendy Kremeier Steve Hammer Neil Jackson Cheryl Kuchler Matt Handlovits Lauralee Jacobs Helen Kuhn James Hannan Patrick James Shirley Kuhn Rita Hannan Calvert Jared Jill Kullen Janet Hargrove Amy Jarvis Erjo Kuorikoski Jeff Harrington Lucille Jaworski Franklin Kurtz Jeff Harrington Justin Jeffries Marvin and Anne Kurtzman Frankie Harrison Jennifer Daley Jeweler Joanne and John LaBarbera Kenneth and Denise Harrison Donald Johnson Roberta Laidig Kim Harrison J.E. and R.A. Johnson Miriam Lakes James and Betty Hartigan Sally Johnson Sue Lamoree Jeff and Ishi Hayes David and Claudia Jonas Carol and Cheryl Lange Judith A. Haynes Helina Hee Jung Yoon-Adams John and Jacqueline Lange Judith C. Haynes Corey Kanon Scott Lange Jo-Ann Hedderich Tobe Kanon Arthur Lattanzi III Ann Heinson Lawrence and Nicole Kaplan Emmy Lawrence Lorie Heller-Smith Corinne and Ted Karpinski Elizabeth Lawson Ronald and Melvina Helwig James Keale Timothy Lazer David Henning Priscilla Kean Mark and Carolyn Lee Mary Kay Henson Kimberly Kellett Heather Lehman Judith Hertzler Deborah and Alan Kelmereit Stephen Leichner Rachel Heston Erin Kelmereit Tony Leonardis Lisa Hildebrand Elizabeth Kelsey Marianne Leone Evan Hirsch Alexis Kennedy Dennis and Linda Leuthauser Carolyn Hitt Ann Sage Kent Jenny Leyva Ann Hittner Mary Kercher Cory Lieber Linda Hogan Thomas Kerney Fran Liebowitz Gregg Hoge Christopher Kessler Margaret Lindberg Paul Hoge Sara Kidd Barbara Linn Neville and Hyacinth Holder Mary Ruth Kieffer Paul Linsk, CPA Jeffrey Holman Michael Killeen Joanne Logar Gary Holt Jody King Gloria Lombardi Jean Homenick Colleen Kisielewski Harry and Michaelina Lombardi Reeves Honey Kenneth and Pamela Klopfer Dennis Loomis Jean Horn Rev. Arthur Knight Jessica Lovelace Pamela Horn Katy Knits James Lubin Wendy Hostetter Karl and Cara Knutson Joseph Lubin Susan Huch Carol Kolek Nina Lynch Kimberly Hunter Mary Kollmansberger Fraser and Amy Lynn Denis and Margaret Hutchings Sharon Kossman Holly Machado Ronald Hutton Helen Koutsogiannis Cheryl MacInnis Lisa Imo Mitchell Kowal Toni MacIntyre Casey Ireland Teresa Kragnes Nancy Mackiewicz

WINTER 2014 NEWSLETTER PAGE 51 THE TRANSVERSE MYELITIS ASSOCIATION THE TRANSVERSE MYELITIS ASSOCIATION

... Continued 2012 Donors

James Maddox Stephanie Miller Shelia Pendergraft Dorothy Madewell Jennifer Mittry McRae Robert Penrod Joyce Magoteau Vincent and Aloha Moll Nancy Penslien Shikharesh Majumdar Dorothy Monahan George Perdue Rebecca Makely Brian Mooney Rita Perenson Vincent Mangia Alicia Moore James Perkaus Richard and Tammy Manko Marianne Moore Sue Perkins Tonya Mannes Theresa Moore Mary Ann Perks R. Elizabeth Manning Wendy Moore Jim Perrin Charleen and Harold Marad William Moore Harriet Petersel Stephen Marks Jeffrey Moore Jr. Mr. and Mrs. David Pett Karen Marshall Joyce Mordhorst Nina Pettersen Robert and Gina Marshall Mary Morgan Bernie Pfiester Amy Martin Geraldine Murray Betty Phillips Hugh Martin Kay Murray Doris Phinney Martha Mascia-Strickler Khalid Muslih Katherine Piehl Ayanna Matlock Donna Myers Diane Pierson Joe and Maureen Matula Kathleen Myers Debra Pikulski Joyce McAuley Marjorie Narducci Kenneth and Sharon Pipes Philip and Rose McAuley Paul and Bonnie Narducci Gretchen Poliero Linda McClees Jenny Nash Charles Polito Mark and Michelle McCloskey Sharol Neely Debbie Pollack Daniel McCormack J David Nemeth Gary Pollack Lois McFadden Michael Nicholson Karen Pollack Herschel and Barbara McFarlen Stacy Niewinski Louis Pompi Meghan McGarry Hioshi Nishizawa Evelyn Powers Ruth McGee Lora Northern Irene Powers Paul McGrory Crosby and Anarose O’Young Juanita Price Susan McGrory Michael O’Brien, Esq Susan Promislo Robin McKelvey Barbara Orchard-Carr Mary Lou Qualtrough James and Kristine McKinley Chris Orndorff Erelyn Quiban Alyce McMahan Lois Osborn Betty Shaffer and Nancy Quigley Daniel McNulty Cortland and Carol Overmyer Dennis Rabalais Jenny McPherson Theresa Pacione Jason and Frieda Rabinovitz Tamara Meade Dexter and Dorothy Packard Edward Radatz Esther Meeuwenberg Gregory and Debra Paddack Sydelle Raffe David and Cherie Meienschein Jo Anne Pajcic Gira Rajan Patricia Meisel Janet Palmer Cynthia Ranii Janelle Melcher Maureen Palmeri Ron and Mina Raulerson June Meyer Frank and Rebecca Pantano Patricia Rech Carl and Peggy Michels Margaret Panzarella Ron Redmann April Middleman Diane Parasci Cledith Reed D.E. and J.M. Miech Willam and Jane Patsos Donna and Jeff Reed James Miller Adam and Ann Marie Pawlick Jane Reich Margaret Miller Michael Peacock David Reiser Marie Miller Kelly Peasley Joanne Reiter Roberta Miller C. Peltier Elaine Revell

PAGE 52 WINTER 2014 NEWSLETTER THE TRANSVERSE MYELITIS ASSOCIATION THE TRANSVERSE MYELITIS ASSOCIATION

Kelly Reymann Helen Schultz Stuart Statland Judy Reynolds George and Sue Schurr Brad Steeples Chung and Jung Rhee Kateri Schutt James and Deborah Stephens Christine Rhoades Alan Schwalbe Susan Stewart Rokell Rhodes Robert Scios Andrew Stine Annette Ricciuti Philip and Rose Ann Scully James Stitch Jr. Maria Riddle George Scurfield Elaina Stokes Joy Riley Farnaz Sedghi Clarence and Anne Lynn Stone Barry and Staci Ritz Victoria Seibert M. Doyle and Joyce Stoner Sharon Robbins Renate and Johann Seitz Dorothy Stream Daniel and Deanna Roberts Jane Shaffer Darryl and Nina Stromberg Ryan and Lisa Roberts Jean Shea Deborah Summerville Darlene Robertson John Sheldon Chadwick and Leigh Ann Sutton Richard and Penny Robertson Nancy Shelly David Sutton Don and Bonnie Robinson Evan and Jamie Shepard Steven Swain C. Darlene Rogers Vickie McGraw and William Sherman B.J. Swartz Paula Roknick Daniel and Marcia Siegel Sara Sweeney Sue Rokos Murray Siegel William Sweeney Robert Romps Sanford and Pauline Siegel Reny Tan Danielle Rose Stuart Siegfried Charles Tanner Brenda Rosenbaum Dan and Denise Sikorski Alessandra and Joseph Trani Taverna- Alan Rosenberg Keye and Catherine Simpkins Trani Susan Rosica Astrid Sipos Joan Taylor Amy Rotchford Alice and Daniel Sisbarro William Taylor Brian Rotchford Mark Skubis Richard Telander Joseph Rotchford Annette and Gene Slaughter Hilary Tepper Linda Rothemund Robert Slayton Jamie Thoma Linda Rubarski Christopher Slinn Albert Tolle Denise Rubba Erica Smith Doris Trax Allen and Ann-Marie Rucker Linda McCoy Smith Judith Trepanier Garth Russell Sandy and Margaret Smith Marlena Trevino Don and Lynn Ryan Denise Smyth Mary Beth Trich Spaeth Gerald Saccomanno Cynthia Snyder Robert James Twitchell Janet Sandefur David Sommerville Susan Uttal Diane Sandler Karen Sorensen Desiree Van Blaricom Gerald Saracini Renee Sours Van Blaricom Family Barbara Sattler Andrew Spaeth Jos Van Bragt Gary Saylor Colleen Spaeth Paul Van Hove Bob Scafidi Catherine Speaks Gerald and Diane Vanderlugt Joe Scafidi Gail Spector John VanderWal Scott Schaefer Jeanne Spinelli Susan Vaughan Hyman and Perle Schechter John Spoolman Diane Vecchione Marc Schechter Janice Staedt Jeanna Ver Strat Harriet Schlacht Marvin and Mary Lou Staehle Anne-Marie Vidal Carol Schlegel Michael Stafford Cora Vogel Alfred Schmidt Hannah Stanley Victor and Marie Vogt Heather Dairy Schuck Sharon Starr Patricia Voorheis

WINTER 2014 NEWSLETTER PAGE 53 ... Continued 2012 Donors

Mary Vulic Marguerite Whiteman Qiuyue Yu Michael Walker David and Cynthia Whiting Jeffrey Zabel Susan Walters David Whitney Janet Zelenka Calvin and Margherita Wang Rebecca Whitney Paulette Zerbo Sharon Warren Dolores Reed and Tom and John Rose Marie Zimmer Kim Waters Wichman Kate Zinsky Martha Watkins Daniel Wilcox Frank Zisa Charney Weber George Willis Geri Zisa Jim and Barbara Weir Mary Jo Willis Debbie Zola-Bell Adrianne Wells Brandon Wilson Carl Zuckerman Ralph Wells Linda Wilson Jay and Rachelle Zukerman Dennis Welsh Sheila Woerner Morris and Donna Zupan Gary and Lori Werkema Dennis and Elise Wolf Florence Zuvich Mary Weston Sue Woller Deborah and Michael Capen Jill Whalen Arlene Wong-Mathewson Roberta Pesce John Whalen Jacquelyn Wray Rares Pamfil Morris Whitcup Yeiter Family James Lubin Steve White Edward and Catherine Young 2012 ORGANIZATIONS

Advanced Math and Science Academy HL Bolkema Decorating Senior Seasons Aetna Foundation HME Medical Shop St. Bartholomew Knights of Columbus Balconi, Inc. IBM Employee Services Center St. Bartholomew’s Episcopal Church Buckeye Pipe Line Company JP Morgan Chase Foundation Tamra Wade, Inc Chase LapDawg Texas Midwest Surgery Center LLC Express Medical Supply, Inc Network Executive Software The Plumber Foundation for the Carolinas ParaKord Products The Roles Family Foundation Freeman, Barton, Huber & Sacks P. A. Pew Charitable Trusts Twin-State Auto Racing Club Glendale Builders, Inc. RMS Management Washington State Combined Fund Herbert O. Wolfe Foundation Robert Wood Johnson Foundation Drive

PAGE 54 THANK YOU!

PAGE 55 The Transverse Myelitis Association Sanford J. Siegel Non-Profit Org. US Postage 1787 Sutter Parkway PAID Powell, Ohio 43065-8806 Columbus, OH Permit No 2609

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CONTACT US

Sandy Siegel | President | [email protected] | 855-380-3330 - extension 1 Chitra Krishnan | Executive Director | [email protected] | 855-380-3330 - extension 2 Roberta Pesce | Executive Editor (Consultant) | [email protected] ANNOUNCEMENTS

2014 TMA Family Camp: July 23–27, 2014. Details inside.

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The Transverse Myelitis Association Sanford Siegel, President 1787 Sutter Parkway Powell OH 43065-8806 http://www.myelitis.org/donate