March 2015 Volume 38 Issue 1
Nutmeg Chapter: www.myasthenia.org/Connecticut_Nutmeg National: www.myasthenia.org Email: [email protected] Facebook: www.facebook.com/ConnecticutNutmeg Telephone: (203) 733-2705
Connecticut’s Second Annual MG Walk 2015 Goal: $40,000
Saturday, June 6, 2015 East Rock Park, New Haven, CT 1 or 3 Mile Routes Registration Opens at 9:00 AM Walk Begins at 10:00 AM
Join us for our second MG Walk at East Rock Park in New Haven sponsored by the Connecticut “Nutmeg” State Chapter for Myasthenia Gravis. Our mission remains as always to see…
A WORLD WITHOUT MYASTHENIA GRAVIS.
CHAPTER NEWS
President’s Corner Welcome spring!!! So glad the snow started melting the last few weeks as I never thought we would ever see the green grass again. We continue to welcome new members who attend our bi-monthly support group meetings. Regarding our Support Group Meetings – the schedule will probably change slightly as we just discovered that St. Vincent’s Hospital Seton Room is under construction. Please check our chapter website for updates for dates and times of changes to upcoming meetings – we did manage to run our support group on Sunday March 16 out of the lobby! Next Support Group to be held at my home: Saturday April 18; 21 Benson Drive, Danbury, CT 06810; 2 to 4 pm http://myasthenia.org/communitysupport/MGFAChapters/Connecticut/SupportGroups.aspx
Ever since I first joined the Connecticut Nutmeg State Chapter of the MGFA, I was faced with many administrative challenges, first as the Treasurer trying to file the appropriate paperwork (Form 990) and then second, as the President, trying to maintain our public charity tax exempt status when funds were low, and trying to manage board and annual meetings that were over 50 miles away from my home. Without the help of the members of the board who are also scattered throughout the state of CT, we would not have had the resources to publish this newsletter, nor would we have been able to continue to support the National organization. Our board members are exceptional people and deserve a High-Five!!!
Today, the National Board is proposing a change in the organization of the MGFA’s structure to unify the state chapters and the state support groups together as one. We admire the efforts of the National Board as they are all volunteers as are we, and they have put together a very detailed proposal which our local state chapter board will be reviewing and voting on in the upcoming National Conference at the end of April/May. Please know that we will decide our vote based on due diligence. This chapter was formed in 1973 and has provided support to MG patients, caregivers and their families for over 42 years. We hope to be around for another 42 years! If you wish to become a board member, please feel free to reach out to us anytime, we always need volunteers. Don’t forget to check us out on our Facebook page as we approach the beginning of the annual MG Walk to be hosted on Saturday June 6 2015: https://www.facebook.com/ConnecticutNutmeg One last note to all, thank you for your support!
Annie Denninger, Chairperson (203) 733-2705 [email protected]
The Nutmeg – March 2015 Page | 2 CHAPTER NEWS
Walking towards the Ultimate “Finish Line”… a World without MG!
The headline above is borrowed from the National MG Walk’s online page (www.mgwalk.org). Let’s join the crowd and walk toward our “Finish Line” at the second Connecticut MG Walk at East Rock Park in New Haven on June 6, at 10:00 a.m. (registration opens at 9:00 a.m.). Rain or shine! Save this date so you will be part of generating awareness, renewing hope, and creating a community of support and strength. Last year, at our first walk, we raised over $30,000.00. Our goal this year is $40,000.00. We will need everyone’s help to achieve this goal.
Come to New Haven and meet MG patients, caregivers, family, and friends. It is a great place to exchange information and increase your knowledge about myasthenia gravis. Most importantly, you will walk away acquiring a new MG friend. The best part of the MG Walk is the camaraderie it builds and the comfort you acquire knowing that you are not alone in the battle against this disease.
We encourage you to go to www.mgwalk.org/connecticut and register. There you can set up your “team page” for friends and relatives to make contributions. We need volunteers to help us set up, sign in participants, hand out snacks and water, mark the route and keep everything running smoothly! If you are interested in being a volunteer, let us know. You can contact Terri Adams at (203) 206-9532, Toni Brown at (203) 589-3105 or Anna Denninger at (203) 733-2705 to volunteer, or if you have questions or want to know more about the Connecticut MG Walk.
Join us at East Rock Park in New Haven. Let’s all walk together as a united group joining the tens of thousands of other MG walkers across the nation in the fight against MG.
Certainly, we prefer you, your family and friends come out and walk with us, but if you cannot and wish to make a donation, you may do so by simply by logging on the MG Walk website (see below) and donate toward a particular walker or make a general donation to the Connecticut Walk.
www.mgwalk.org/connecticut
SEE YOU JUNE 6TH – RAIN OR SHINE
The Nutmeg – March 2015 Page | 3 CHAPTER NEWS
Meet the Board Members of the Connecticut “Nutmeg” State Chapter. These individuals generously donate their time and spirit to help create awareness of MG and provide support to MG patients and caregivers in the state of Connecticut.
Anna F. Denninger, Danbury, Connecticut - Senior Accountant, Tommie Copper LLC - Bachelors Business Administration – Western Connecticut State University - Chairperson, Connecticut “Nutmeg” State Chapter, MGFA - Board Member since 2010
My Cause I was diagnosed with MG in 2007. My MG has progressed from Ocular to Generalized MG. Ever since then, I have made it my mission to share my experiences and possibly share any new medical updates provided to us by our National organization regarding MG with patients, caregivers and their families. My wish is to support my cause as long as I am able until a cure is found.
Veronica T. Adams, New York, NY M. Terri Adams, Middlebury, CT and Arlington, VA - Co-Owner Commemoratives - Lead Associate at Booz, Allen, Hamilton Adams and Adams, Inc. -BA in Justice; Minors in Psychology and Middlebury, CT Spanish – American University, Washington, - Former VP, Marketing, Grolier Enterprises, DC Danbury, CT - Masters in Technology Management - BA in Marketing – Teikyo Post University Georgetown University, Washington, DC, - MA in Communications – University of Hartford anticipated May 2015 - Treasurer – CT “Nutmeg” State Chapter, MGFA - Diagnosed with MG in 2009 - Editor – CT “Nutmeg” State Chapter, MGFA - CT “Nutmeg” State Chapter, MGFA, Board Newsletter Member – 1 year - Daughter has MG - Joined to raise awareness and provide - CT “Nutmeg” State Chapter, MGFA, Board Member - support for MG. 2 years - Joined to support daughter in fight against MG.
George G. Adams, Middlebury, CT - Co-Owner Commemoratives Adams and Adams, Inc., Middlebury, CT - Former Senior VP, Finance & CFO, Grolier Enterprises, Danbury, CT - First Lieutenant US Army, Vietnam Veteran - BS in Accounting – University of Connecticut - Member of the Middlebury Volunteer Fire Department -Daughter has MG - CT “Nutmeg” State Chapter Board MGFA, Board Member, – 2 years - Joined to support daughter in fight against MG and to raise awareness about this disease.
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Steve Brown, Bloomfield, CT - Account Support Manager/Engineer (Hewlett-Packard Company) - Associate’s in Applied Sciences (University of Hartford) - Bachelor’s in Electronics Engineering Technology (University of Hartford) - Masonic: (Composite Lodge #22 of Bloomfield, Connecticut) Master Mason (Hartford Consistory #80) 32 Degree Mason; Esquire Club of Hartford (President); Boston-Hartford District Sons of Allen Men’s Ministry ~ Southern Coordinator - CT “Nutmeg” State Chapter, MGFA, Board Member – 1 year - Joined to show love, inspiration, and support for my stepson Scott, who has MG.
Toni R. Brown, Bloomfield, CT - Licensed Practical Nurse II, Yale New Haven Health; Eli Whitney LPN program; - Associate’s in Science (Gateway Community College) - Southern Connecticut Black Nurses Association - Treasurer & Executive Board; Viola Fludd Missionary Society; Mildred Foster Stewardess Board; Bethel Ministry To Women - past President; Prince Hall Adah Chapter #22 Order of the Eastern Stars- Recorder - CT “Nutmeg” State Chapter, MGFA, Board Member – 1 year - Mother of MG patient. When my son Scott was diagnosed with MG at the age of 23, it was very difficult. I felt my job as a parent was to make everything okay ... this was one thing I couldn’t do. To assist in my feeling of helplessness, I decided to join the Connecticut “Nutmeg” State Chapter to provide awareness and raise funds for research for a world without Myasthenia Gravis.
Edward Czaczkes, Wethersfield, CT Partner- Czaczkes and Czaczkes Attorneys at Law, Norwich, Connecticut JD - University of Baltimore BA -American University Member of the Connecticut Bar Association Vice-President - Board Member of CT “Nutmeg” State Chapter, MGFA – 2 years I have Myasthenia Gravis and am grateful for the support of the Nutmeg Chapter. I am also fortunate for the research being done on MG and the advances in the treatment of MG. I sincerely hope that one day everyone with MG may be in remission.
Jerry Feldman, New Haven, CT - MBA, University of New Haven - Treasurer and Board of Congregation Mishkan Israel - Boy Scouts of America - MG Patient - CT “Nutmeg” State Chapter, MGFA, Board Member – 9 years - Joined to support others with MG.
Elaine Levin Feldman, New Haven, CT - BA, Boston University - VP of Resident Association Tower One – Tower East; Resident representative - Volunteer for Jewish Family Services, New Haven. CT - Spouse Caretaker - CT “Nutmeg” State Chapter, MGFA, Board Member – 9 years - Joined to support husband and other caregivers and learn all that one can about MG.
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James “Jim” P. Fogarty, Monroe, CT - BA in Economics, Fairfield University, Fairfield, CT. - US Air Force (four years active, four years reserve) - Longtime member of APICS (American Production & Inventory Control Society). Certified CPIM - Former member of the Monroe, CT library board - Retired from Pitney-Bowes Stamford as Project Manager for implementation of computer-based systems for materials management in a manufacturing environment. - Prior employment with Sperry Rand, General Electric Co., Farrel Corporation, Raybestos, Manhattan. Extensive travel to implement materials systems. - My main reasons for participating in the CT “Nutmeg” State Chapter, MGFA, as a Board member is to support the National MGFA in their programs and to provide support to local MG patients through education and participative support as needed. Approximately 10 years as a Board member. - I have been an MG patient for 15 years.
Betty J. Gerner, RN, Milford, CT - BSN, Masters in Health Care Administration - Attended St. Anselm College; RPI - Active in Milford Literacy Center as a tutor and tutor trainer for teaching English as a second language - Lector and Eucharistic Minister in my parish - CT “Nutmeg” State Chapter, MGFA, Board Member and Secretary for 9 years - I was asked to join the CT Chapter of MG by a longtime friend and colleague where I worked. She has struggled with MG for a number of years and I had seen first-hand the many problems that this disease causes in a person’s life. I have felt that my participation in the Chapter is a small way of helping her and the many others affected by this disease. It has been a privilege and pleasure to serve on the Board.
Pam Ritter, Fairfield CT - CT “Nutmeg” State Chapter, MGFA, Board Member - 2 years - no more volunteer groups since I got OLD & feeble (Editor’s note: anyone who knows Pam knows that this isn’t true and it shows her sharp sense of humor) - Joined to fight against and help raise awareness of MG in memory of husband who died of MG complications.
Susan Wineland, Orange, CT - Spanish teacher and Chair of the Modern Language Department, Hopkins School, New Haven. - BA in Spanish and Latin American Area Studies - American University, Washington, DC - MA in School Counseling - University of Bridgeport - Daughter has MG - CT “Nutmeg” State Chapter, MGFA, Board Member – 6 years - Joined to support daughter in fight against MG.
The Nutmeg – March 2015 Page | 6 CHAPTER NEWS
Save The Date! The 2015 National Conference will be held April 29 - May 1 at the Wyndham San Diego Bayside in San Diego, CA.
Registration Fee for the conference is $195.00 per person. Registration includes complete conference handbook, breakfast and breaks each day, lunch on both days, and the Awards Dinner.
You must make your own reservations for your stay at the Wyndham San Diego Bayside Hotel. Contact the hotel directly at (800) 996-3426 and reference the MGFA 2015 Annual Meeting to take advantage of the $140 MGFA rate. Reservations must be made by April 6, 2015 to qualify for the MGFA rate. Please note: $140 is for both single and double occupancy.
Please call the MGFA office at (800) 541-5454 for further details.
Past conferences have very rewarding to attendees, who learn about MG from the experts and most importantly, one another. This is where you have an opportunity to speak to, and interact with, fellow MGer’s and Caregivers.
June is MG Awareness Month
The Connecticut “Nutmeg” State Chapter is currently working with the state’s Legislative offices to have Governor Dannel P. Malloy proclaim June as MG Awareness month in the State of Connecticut. The honor was achieved last year and the proclamation was presented at the State Legislative Office Building in Hartford. A large contingent of state legislators and members of the Connecticut “Nutmeg” State Chapter were present. State Representative Selim Noujaim (R-74th, Waterbury) was the emcee for this newsworthy event. We encourage all members to look for a forthcoming announcement as to the day and time for this year’s proclamation. The more members who attend, the stronger our message about creating awareness.
Additional information about this event can be obtained by calling Terri Adams and (203) 206-9532 or via email at [email protected].
State Representative Selim G. Noujaim (R-74th, Waterbury) with Speaker of the House Brendan J. Sharkey (D-88th, Hamden) at last year’s proclamation.
The Nutmeg – March 2015 Page | 7 CHAPTER NEWS
Andrea Mazzarelli, a Connecticut “Nutmeg” State Chapter member, shares her MG story. Andrea is from Torrington, CT, and was diagnosed with MG at the age of 27. Last year at the Connecticut State Capitol during the MG “June Awareness” Proclamation Ceremony State Representative Jay M. Case (R-63rd, Winchester), mentioned Andrea as a dedicated, hard-working and inspiring young women w ho was forced to leave the workforce because of MG. Meet Andrea.
I was a 37-year-old mother of two children, ages two and four, a successful businesswoman and wife when I was finally blessed with a diagnosis of Myasthenia Gravis. I say “blessed” because it took forever: over a year, which at the time, seemed endless, to figure out what was going on with me. Countless doctors’ appointments and all sorts of tests. I thought, “Great, I can take some medicine and be back to my normal self.”
Well, it hasn’t happened YET, even after 10 years. Between my symptoms getting worse with the double vision, problems holding my head up, weak arms, and the terrible fatigue, I had to leave my job. After two years, it was discovered that I had a thymoma. I had that removed, but none of my symptoms improved. I tried Rituxan and that also did not help. Then, on top of the other symptoms, I started having a lot of difficulty swallowing, walking up stairs, and walking long distances, which means I have to use my walker or wheelchair at times. I have had several hospital stays for crises, which are really scary. I have IVIG
Andrea Mazzarelli every four weeks, which is a two-day, eight-hour infusion. I still have daily problems with all my symptoms. I know stress plays a huge role, but at times, the stress is not under my control, just as it really is under no one’s control. A move to another state, a divorce, and being a single mother of two with this disease is demanding. THANK GOD for my great family and great friends, for without them I don’t know where my kids and I would be.
Two years ago my son Michael, who was 10 at the time, started complaining about seeing two things at once. I thought, “No, it can’t be MG!” So, off to the different doctors’ appointments and tests again! His diagnosis was indeed MG. As a parent, the initial reaction permeated my thoughts: “This CANNOT be happening; he’s just a child who has already seen and been through way too much in his young life! Talk about unfair….”
The past two years have been problematic, to say the least. My son’s fear of ending up like me makes me cry. I do everything I can to assure him that he will still be a “normal” kid. He will still be able to play baseball and basketball, and he will still be excellent at both. The great news is, he’s still playing!
We deal with all our STRESS, difficulties, emotions, bad days, and challenges as best we can. When people feel bad for us, I say, “please don’t.” As I have said since my diagnosis, “I/we could be much worse off, and I feel blessed for that.” After all my kids and I have been through, I still feel the same way. We can never give in to this - - or any other challenges that come our way. We hope and pray EVERYDAY that some fabulous people find a cure for this unique disease.
As of late, it hasn’t been easy for me to actively participate in many activities, but in 2012, my children formed a MG walk team called “Andrea’s Angels.” Together we raised over $2,500 in the NYC TriState MG Walk.
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Pictured here with Andrea is her daughter Mikayla, her sister Laurie Copertino, and son Michael. The picture was taken at the TriState MG Walk.
Michael, who has also been diagnosed with MG, is featured with his baseball team sharing a victorious moment. The photo is a testament to Michael’s courage to live a normal life.
A PICTURE IS WORTH A THOUSAND WORDS
We would like to include in each newsletter a story of one of our local MG patients. Help us personalize each newsletter. Send your MG story to [email protected]. Your story will remain strictly confidential and will only be published with your final approval.
SUPPORT GROUP MEETINGS
The Support Group currently meets on Sunday every other month from 2 p.m. - 4 p.m. Family and friends are encouraged to attend. For more information, call (203) 556-5012, or email [email protected]. Moderator Jim Fogarty can be reached on his cell phone at (203) 556-2043 or home phone at (203) 268-4518 if anyone has a problem the day of the meeting, i.e., finding the meeting, etc.
Next scheduled Meetings; Sunday, April 18, 2015 – 21 Benson Dr, Danbury, CT – Denninger Home, 2 to 4 pm Sunday, June 28, 2015 – 69 Stonewall Dr, Middlebury, CT – Adams Home, 1 to 4 pm August, 2015 Hartford Area Not Yet Scheduled
The Nutmeg – March 2015 Page | 9 CHAPTER NEWS
“Chopped” Champion Lisa Keys, competitive amateur cook, shares two of her new latest creations utilizing some ancient grains.
“My recent recipes have taken a more healthy spin after too many treats during the holidays, and I have enjoyed tinkering with some ancient grains. When not cooking, I have been doing a lot of sewing on behalf of my daughter Caitlin and her husband Sam. They have moved into a new home and I have been making pillows and curtains and some very pretty cushions for their window seat. Then, my husband Bill surprised me with a trip to Key West, which provided some fine inspiration in the kitchen.”
Read some inspirational essays complemented with recipes from Lisa in her blog at www.goodgriefcook.com. Her signature recipes are influenced by the places Lisa Keys she has been and inspired by those she loves most.
Slow Cooker Toasted Teff & Steel Cut Oats Porridge
½ cup teff, toasted
½ cup steel cut oats, toasted
3 cups water
1-tablespoon agave or maple syrup
½ large baking apple, peeled, chopped
6 fresh, pitted dates, chopped
¼ teaspoon cinnamon
Pinch of coarse salt
Toppings: fresh fruit, yogurt, agave, maple syrup
Get out your slow cooker. Fill it with 2 cups of water. Place all the porridge ingredients (accept the garnishes) in a medium heat-proof bowl that will fit inside the slow cooker. Place the ingredient-filled bowl in the slow cooker creating a double-boiler effect. Add additional water, if needed, so water comes up at least half-way to the side of bowl. Cover and cook on low for 8 hours. Stir and serve with favorite toppings. If porridge is too thick, stir in some warm milk or apple juice to thin it out. Serves 6.
The Nutmeg – March 2015 Page | 10 CHAPTER NEWS
Thai Curry Butternut Squash Bisque
1 large butternut squash, seeded, peeled diced
2-tablespoons canola oil
1-tablespoon butter
1 tablespoon chopped lemon grass
2 teaspoons green curry paste or more or less to taste (feel free to substitute any spices you like)
1 large onion, chopped
¾ cup chopped celery
¼ cup seeded and chopped jalapeno pepper, plus additional for garnish (mild green pepper can be used if you don’t like spicy)
1 (14 oz.) can chicken broth
1 (14 oz.) can coconut milk (use almond milk if you don’t like coconut)
2 tablespoons coconut sugar or brown sugar
1 lime, halved
Kosher salt and freshly ground black pepper
Heat oven to 400F. Line a large-rimmed, baking sheet with foil. Toss the squash with 1 tablespoon of oil and spread out in an even layer on prepared pan. Sprinkle with a pinch of salt and pepper. Roast about 30 minutes or until just tender. Meanwhile, heat remaining oil and butter in a Dutch oven or stockpot over medium-high heat. Add lemon grass, curry paste, onion, celery and jalapeno; cook, stirring occasionally, 5 to 6 minutes or until vegetables are tender. Add chicken broth, coconut milk, sugar, juice from half the lime and ¾ of the roasted butternut squash. Bring mixture to a boil. Reduce heat and simmer for 5 minutes. Using an immersion blender, puree soup until smooth. (Soup may also be pureed in batches in a regular blender). Taste and season with salt and pepper and balance out with additional sugar and/or lime juice. Ladle soup into bowls. Garnish with remaining roasted squash and minced jalapeno or chopped cilantro.
[Editor’s Note: Lisa has been named a finalist in the National Festival of Breads sponsored by King Arthur Flour, Red Star Yeast, and Kansas Wheat. The National Festival of Breads is the country’s only national amateur bread- baking competition. Lisa will be traveling to Kansas this summer to bake her Smokehouse Cranberry-Cheese Bread creation. Good luck Lisa! I will keep our readers advised of your success. Terri Adams, “Nutmeg” Newsletter Editor]
The Nutmeg – March 2015 Page | 11 National News
“Empire” on Fox
For those of you not familiar with the new hit series “Empire”, lead character Lucious Lyon has been diagnosed with myasthenia gravis. Lucious had feared that he had Amyotrophic lateral sclerosis
(ALS) or Lou Gehrig’s disease. When Lucious receives the diagnosis of MG, there’s a sense of relief that he doesn’t have death sentenance. If you have not seen the show yet, do so. I will, to see
how he manages his MG.
Empire had a record breaking 16.0 Million plus viewers for its season ending episode. Lucious Lyon (Terrence Howard) in the "Empire" season finale after his MG diagnosis.
PALS List
This list is for you to use if you need or want to speak with someone about MG. All the folks on this MG PALS list are interested in, and willing to be, contacted by anyone needing to talk about MG, whether a patient, family or friend. Folks on the list have indicated what avenue of contact is O.K. – phone or e-mail.
These are the codes to use to look up on the list if you want to speak with someone with specific experience with MG.
We are always very interested in your feedback on information we provide at MG PALS. PLEASE let the MG PAL you contacted and/or the Chapter know when any information is incorrect, but also when a resource is helpful and positive, too.
MG PALS: Current information is important for people to reach you successfully. If you make any changes to your contact information, please be sure to let us know.
To be a MG PAL simply call Anna Denninger at (203) 206-9532 or email [email protected].
MG STATUS: MG Type: MG Treatment: P-Patient B-Bulbar A-Imuran/azathioprine S-Spouse of patient C-Congenital C- Cellcept O-Other family G-Generalized I-IVIG M-MUSK+ M-Mestinon O-Ocular P-Prednisone Z-Other/unknown R-Rituxan S-Prostigmin T-Thymectomy REMISSION: V-On ventilator Y-Is / Was in remission X-Plasma exchange N-No remission but hoping Y-Cyclosporine Z-Other
The Nutmeg – March 2015 Page | 12
NAME TELEPHONE EMAIL MG AGE MGTYPE LOCATION MG STATUS MG REMISS ION TREATMENT veronica.adams0318 G P NY I Y 20’s Veronica Adams (203) 206-9532 @gmail.com Sister M. Peter sisterpeter P CT A,P N O,G Bernard, SCMC @holyfamilywillimantic.org O,G P CT M 50’s Anna Denninger (203) 733-2705 [email protected] B,O, R,P, P CT N 30’s G T, M,I Jennifer Dums (203) 430-6014 [email protected] S CT 70’s Elaine Feldman (203) 468-2156 [email protected]
O,G P CT N 70’s Jerry Feldman (203) 468-2156 [email protected]
G P CT I Y 70’s Vincent Genovese (203) 846-9458 vgeno38384@aol.com
G P CT M,A N 60’s Jack Kertenis (860) 749-7754 [email protected] O P CT P Y 60’s Don Nitsche (860)-693-0420 dnitsche@comcast.net T, P, M, O,G P CT A, Y,C, N 30’s Bridget Noujaim (203) 574-1158 I,R M,C,P, O,G P CT N 60’s I,T,V,X Fran Padula [email protected] B,O P CT A,T Y 50’s Hilary Silver (860) 916-0086 [email protected]
O P CT M N 70’s Christina Sims (860) 283-5566 [email protected] M P CT R Y 60’s Vicki Sullivan [email protected]
S ME Connie Hinkley (207) 729-3573 [email protected] O,G P ME T,M,C Y 60’s William Hinkley (207) 729-3573 [email protected] P I X G P ME S A Y N Kathleen Kluger (207) 363-6953 [email protected] V G P ME C,M,X N 70’s Charlie Perry (207) 350-3333 [email protected] B P ME A N 70’s Harrison Roper (207) 532-3797 [email protected] G P ME A N 70’s Hugh Swan (207) 875-2102
B P VT M C I N 70’s G Robert Barlow (802) 694-1446 [email protected]
G P VT I M N 50’s Lori Cohen (802) 434-4400 [email protected]
G P VT A M N 70’s Robert K. Wolfe (802) 527-0603
G P MA A Y 70’s Leo Desando (978) 374-4306 [email protected]
The Nutmeg – March 2015 Page | 13
Rare Disease Day: NeuroNEXT NN103 Rituximab in Myasthenia Gravis Trial to Hold a Patient Information Webinar
Friday, February 27, 2015
February 28, 2015 is Rare Disease Day. It is an annual awareness day dedicated to elevating public understanding of rare diseases and calling attention to the special challenges faced by patients and the community. According to the National Institutes of Health (NIH), a disease is rare if it affects fewer than 200,000 people. Nearly 1 in 10 Americans live with a rare disease—affecting 30 million people—and two- thirds of these patients are children. There are more than 7,000 rare diseases and only approximately 450 FDA-approved medical treatments.
Myasthenia Gravis (MG) is a chronic autoimmune, neurological disorder of neuromuscular transmission affecting approximately 75,000 individuals in the US alone. Common symptoms include a drooping eyelid, double vision, slurred speech, difficulty chewing and swallowing, weakness in the arms and legs, chronic muscle fatigue, and difficulty breathing. Despite current therapies, a subset of patients continues to have symptoms or have intolerable medication side effects. For the MG Community, this is our chance to bring attention to MG and the challenges that all rare disease sufferers face.
NeuroNEXT and the Rituximab in MG Study Principal Investigator would like to announce an informational session about MG and the details about the clinical trial being conducted across 26 sites in the United States.
Please register for NeuroNEXT NN103 Rituximab in MG: Patient Information Webinar on April 10, 2015 4:00 PM EDT at: https://attendee.gotowebinar.com/register/9031267929090081793
Study Description: A Phase 2 Trial of Rituximab in Myasthenia Gravis (NN103) The purpose of this trial is to learn if rituximab is a safe and effective drug for people with myasthenia gravis (MG). This trial also will determine if rituximab will allow people with MG to decrease their prednisone dosage or discontinue prednisone treatment.
This trial is coordinated by NeuroNEXT (the Network for Excellence in Neuroscience Clinical Trials) with support and funding from the National Institute of Neurological Disorders and Stroke (NINDS). Study drug is being provided by Genentech.
Please see below for additional study details and complete site listing:
• Clinicaltrial.gov NCT02110706 • NeuroNEXT NN103 Project Page
For more information about the study or the Webinar, please contact: [email protected], or call 1-844-MGSTUDY (1-844-647-8839). For more information about Rare Disease Day in the U.S., go to www.rarediseaseday.us.
The Nutmeg – March 2015 Page | 14 CONNECTICUT "NUTMEG" STATE CHAPTER MYASTHENIA GRAVIS FOUNDATION OF AMERICA, INC. MEMBERSHIP RENEWAL FORM 2015
Name: ______ Patient Relative Friend Other Family Member Professional Address: ______
City: ______State: _____ Zip code: ______
Phone number: ______Email address: ______
Enclosed is my Annual Membership Dues of $ 20.00 Enclosed is my Lifetime Membership Dues of $ 200.00 I am enclosing an additional donation of $ ______Total Enclosed $ ______
I WOULD LIKE TO RECEIVE “THE NUTMEG” VIA
E-mail US Mail
Please make checks payable to: CT "Nutmeg" State Chapter, MGFA Send to: CT "Nutmeg" State Chapter, MGFA P.O. Box 2801 Danbury, CT 06813-2801
ACKNOWLEDGEMENT OF DONATIONS
In Memory of Roger Tetreault and Angelo Mammoliti
The Chapter wishes to thank the family and friends of Roger and Angelo, who recently passed away, for the generous donations made to the Chapter in his memory. Our sincerest sympathy to their family and friends.
We are truly grateful to those individuals and families who have donated in honor or in memory of loved ones and friends. The CT "Nutmeg" State Chapter, MGFA, is a volunteer, 501 C (3) non-profit organization whose sole purpose is to assist the myasthenics and medical community of the state. Donations are tax-deductible to the fullest extent of the law. We are thankful to all those who remember us in their giving. Please be aware that individual acknowledgment notes are sent out for the donations we receive. Please feel free to contact the chapter with any questions or concerns about this.
The Nutmeg – March 2015 Page | 15
NON-PROFIT ORGANIZATION U.S. POSTAGE PAID Connecticut “Nutmeg” State Chapter Permit No. 411 Covering Connecticut, Maine, Rhode Island and Vermont Waterbury, CT 06701 P.O. Box 2801 Danbury, CT 06813-2801
ADDRESS SERVICE REQUESTED
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Our Vision: A world without myasthenia gravis
Our Mission: Myasthenia Gravis Foundation of America (MGFA) is committed to finding a cure for myasthenia gravis and closely related disorders, improving treatment options, and providing information and support to people with myasthenia gravis through research, education, community programs and advocacy.
NAME: ______Please notify us in advance of your move. Use the handy form below to notify us of your new address. ADDRESS: ______ Please update my mailing to be emailed. CITY ______ Please remove me from the mailing list. STATE: ______ZIP CODE: ______PHONE: ______GO GREEN! DATE OF MOVE: ______EMAIL ADDRESS: ______