CREATIVE CONTROL an Artist with SMA Embraces Life MEET LYNN O’CONNOR VOS MDA’S New President and CEO

MDA.ORG/QUEST WINTER 2018

EMPOWERING FAMILIES WITH INFORMATION AND INSPIRATION CREATIVE CONTROL An artist with SMA embraces life MEET LYNN O’CONNOR VOS MDA’s new president and CEO

Multidisciplinary care improves quality of life for individuals with a neuromuscular diseases lining ADVERTISEMENT Biogen discovers, develops, and delivers therapies for the treatment of neurodegenerative and rare diseases.

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MDA is leading the fight to free individuals — and the families who love them — from the harm A Word from President & CEO of muscular dystrophy, ALS and related life-threatening diseases Lynn O’Connor Vos that take away physical strength, independence and life. We use as president our collective strength to help ince joining MDA kids and adults live longer and and CEO in October, I’ve had the grow stronger by finding research sincere pleasure of spending time breakthroughs across diseases; S caring for individuals from day with and learning from our families, lead- one; and empowering families ing clinical experts, renowned researchers, with services and support in hometowns across America. dedicated sponsors, and passionate MDA staff and volunteers. The progress we’re Learn how you can fund cures, find care and champion making together is unprecedented, the cause at mda.org. and I know it is only the tip of the ice- berg. Working together, I see incredible For advertising opportunities: opportunities to push the limits of neu- Maureen Tuncer romuscular disease research and provide Advertising Sales Manager [email protected] an even better health care experience for For editorial queries: individuals and their families. Alyssa Quintero Many of you have probably been wondering what “ I see incredible Marketing Communications the future holds for MDA and how we will continue to [email protected] opportunities to advance research, innovation, family care and support in 2018 and beyond. By partnering with our community, push the limits of To update personal information we are mapping a strategic plan and specific focus areas neuromuscular and your Quest subscription to transform and save lives. You’ll hear more about this disease research in detail from me throughout the year. status, contact the MDA Resource and provide an Center at 800-572-1717. Additionally, I hope you will read the Q&A on page 33 in which I answer questions from Quest readers even better health about my experience, where I see the greatest oppor- Published quarterly by care experience Muscular Dystrophy Association tunities for MDA to help families and what you can 222 S. Riverside Plaza, Suite 1500 expect in the days and months to come. By combining for individuals and Chicago, Illinois 60606 | (800) 572-1717 email: [email protected] my passion for patient care and work as a clinical nurse their families.” Available on the internet at mda.org/quest ISSN 1087-1578 with deep experience leading health care companies in a Postage paid at Bolingbrook, IL — Lynn O’Connor Vos Nonprofit postal permit number 1446. new era of technology and innovation, I am committed to accelerating treatments, cures and care together for Postmaster: Treat as Standard A Mail Only every MDA family. © 2018, Muscular Dystrophy Association. All rights reserved. MDA and QUEST are registered trademarks I look forward to getting to know you and encour- of the Muscular Dystrophy Association. The acceptance of advertising in this magazine does age you to reach out to me and share your feedback and not constitute or imply endorsement by MDA of any product or service. MDA accepts no responsibility for ideas. Stay in touch with me on Twitter (@lynnvos), and any claims made in any advertisement. Quest reserves the right to refuse to accept any advertisement. For be sure to read MDA’s blog Strongly (strongly.mda.org), advertising information, call (727) 363-0078. where I’ll be posting as a regular contributor. At MDA, Information contained in Quest may not be reproduced, published, transmitted or distributed in whole or in part progress is our promise. I look forward to working with without prior written consent of MDA. Always consult your professional advisers as to how and for you to deliver on that promise to bring hope and medical, legal or financial information in Quest pertains answers for a brighter, healthier future. to you. MDA assumes no liability for any information in Quest. Sincerely, FOLLOW MDA ON

PUBLICATION MANAGEMENT Lynn O’Connor Vos President and CEO GLCDELIVERS.COM Muscular Dystrophy Association

Quest MDA.ORG/QUEST 1 25

winter 2018 CONTENTS

pg 44 DEPARTMENTS FEATURES pg 42 Rene Runions 04 20 SHARING OUR TEAM APPROACH STRENGTH Multidisciplinary care MDA’s Strongly blog improves quality of showcases individuals life for individuals with who use their strength neuromuscular diseases. to help others. MORE ONLINE FOCUS ON: CATCH THE DO-IT- ADAPTIVE EQUIPMENT 06 YOURSELF SPIRIT PROGRESS NOW MDA families are used Read the latest news 41 ACCESS MDA to being problem- on medical research, An MDA Ambassador scientific advances and is inspired by her MDA solvers. In a Quest clinical trials. Summer Camp experience, online exclusive article, bowlers raise money for we explore how real 18 MDA and more. MDA families and those THRIVE 365 26 who support them are Learn how to start and CREATIVE CONTROL using innovative DIY facilitate a support group 50 Tech guru Jared Aronson FROM WHERE I SIT for your community. embraces life with adaptive equipment Seeing how others face imagination and laughter. solutions — both high- pg 13 adversity helps a writer find acceptance and hope. tech and low-tech — to improve everyday life 33 and gain independence. 52 MEET MDA’S NEW Read “A World of LASTING IMPRESSION PRESIDENT AND CEO Opportunities” at A high school play sets Lynn O’Connor Vos the stage for a career in answers readers’ mda.org/quest.

the arts. questions. MDA-022 On the cover: The Labbadia family, pg 20

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MDA’s mission is to free individuals — and the families who love them — from the harm of muscle-debilitating diseases. Giving Every day, people who don’t have neuromuscular disease — Strength to whether they are family, friends or acquaintances of someone Others who does — go to amazing lengths to support that mission. On MDA’s Strongly blog (strongly.mda.org), some of these agenerous individuals explain why they do what they do.

Ron Minz, a lieutenant with the Baltimore At the age of 25, Richard County Fire Department, Leon became a Summer loves visiting MDA Camp counselor for the first Summer Camp on Fire time. Now, at the age of 30, Fighter Day. After a Leon is a city council member camper in a wheelchair in Cape Coral, Fla. He participates asked to ride in a in MDA Lock-Up, supports local Fill the Boot fire truck, Minz built a 28-foot-long drives and encourages other city leaders to accessible fire truck, which he takes to get involved with MDA. Baltimore and Washington, D.C., area “The lessons I have learned about compas- MDA Summer Camps every year. sion, patience and how precious life is have “The look on the kids’ faces is well allowed me not only to become a better person worth the time and effort and money but a better representative for the people.” spent. I do what I do because I like what I do, and it’s the right thing to do.”

In October 2017, Katie Newlywed Erin Foster met her Williams ran the Chicago husband, Brandon, at MDA Summer Marathon with MDA Team Camp, where they Momentum. She was intro- both volunteered as duced to MDA by counselors for years. her college friend Joe That time is so Akmakjian, former MDA meaningful to them National Ambassador. that, in lieu of wedding “I’ve been wanting to do more for others and gifts, they asked for thought this might be an awesome way to do so.” donations to MDA. “There is so much joy seeing these kids at camp. It shows Get Involved us how we want to live our lives both Find your passion, and get involved in the MDA community in a now and in the future.” way that is meaningful for you. Learn how you can help families live longer and grow stronger at mda.org/get-involved.

Quest 4 WINTER 2018 ADVERTISEMENT

IS YOUR NEUROMUSCULAR DIAGNOSIS GENETICALLY CONFIRMED? progress now Tracking research updates and breakthroughs that help accelerate treatments and cures across MDA diseases

MDA Research In Action

MDA Research Dollars Power Progress New MDA grants will impact a range of neuromuscular diseases In November, MDA announced 13 new MDA • Announced Jan. 24: An MDA clinical research network grant research and development grants, totaling $918,000 over three years will spur advances in myo- with a total funding commitment of tonic dystrophy (DM) research. The investment, which provides $3.5 million, that are now supporting continued support for the Myotonic Dystrophy Clinical Research research projects around the world. Network, will support five medical centers that specialize in The new projects cover a broad DM research and clinical care. The network is led by Charles range of diseases in MDA’s program Thornton, professor of neurology at the University of Rochester, and are intended to impact the who serves as the network’s director. Goals are to gain a more greater neuromuscular disease detailed understanding of the DM disease process and to collect landscape. data needed for clinical trials in order to inform what outcome The new awards constitute measures, biomarkers and endpoints will be most appropriate. MDA’s Summer 2017 grant cycle • Announced March 9: MDA’s Winter 2017 round of grants, totaling and are in addition to other awards 29 awards worth more than $7 million, began funding projects announced throughout 2017. covering a number of diseases in MDA’s program on Feb. 1.

Quest 6 WINTER 2018 • Announced March 10: Izumi Biosciences in Lexington, Mass., Brain Foundation — will provide a total of $130,000, including a was awarded an MDA Venture Philanthropy (MVP) grant totaling $10,000-per-year stipend for tuition, to support Hamel’s work to $96,360 to fund early-stage development of IZ10023, a type shed light on the molecular processes that drive DM. of drug called a “pharmacokinetic (PK) enhancer,” which could • Announced Aug. 30: Nicholas Johnson, assistant professor of enhance the effectiveness of other drugs people with ALS are neurology, pediatrics and pathology at the University of Utah in taking, such as riluzole. Salt Lake City, was awarded a human clinical trial grant totaling • Announced June 14: Michael Benatar, at the University of $598,348 over three years to conduct a natural history study in Miami Miller School of Medicine in Florida, and Jonathan Katz, congenital myotonic dystrophy (DM1). at California Pacific Medical Center in San Francisco, were • Announced Oct. 1: Maya Maor Nof, a postdoctoral research awarded a clinical research network grant to support their work fellow at Stanford University School of Medicine in California, on the Clinical Procedures to Support Research (CaPTuRe) was awarded the 2017 SSSI-MDA Fellowship Award. The award, project, which aims to implement the “ALS Toolkit,” a system to co-sponsored by Strength, Science & Stories of Inspiration collect clinical data in such a way that it can be used for ALS (SSSI), will provide a total of $40,000 over two years to support research. The two-year award totaling $300,000 will support Maor Nof’s work to shed light on the mechanisms underlying work conducted through Clinical Research in ALS and Related nerve cell death in ALS. Disorders for Therapy Development (CReATe), aimed at lessen- • Announced Nov. 3: Iron Horse Diagnostics in Scottsdale, Ariz., ing the burden on people with ALS to attend both clinical and was awarded an MDA Venture Philanthropy (MVP) grant totaling research appointments. $233,200 to support development of a prognostic (predictive) test • Announced July 11: Johanna Hamel, a neurologist at the Univer- for ALS. Iron Horse Diagnostics Chief Scientific Officer Andreas sity of Rochester in New York, was awarded a clinical research Jeromin will serve as the principal investigator on the project. training fellowship for her work in comparative studies of RNA toxicity in DM. The two-year award — co-sponsored by MDA MDA currently is funding about 150 research projects with the American Academy of Neurology and the American worldwide. Read more about MDA grants at mda.org/gaag.

ALS (amyotrophic lateral sclerosis) Centaur ALS Trial Seeks Participants Trial will test therapy designed to block nerve cell death

Researchers are looking for people with ALS to participate in the CENTAUR ALS clinical trial. Sponsored by Amylyx Pharmaceuticals, the phase 2 trial is designed to test the safety and tolerability of the experimental drug AMX0035 and determine whether the treatment is able to slow decline of function in people with ALS. AMX0035 is a combination therapy, designed to block nerve cell death and reduce inflammation to slow the progression of ALS. At seven in-person visits, participants will undergo strength testing, blood draws and other assessments to enable investigators to determine whether AMX0035 has any effects on muscle strength and respiratory function, as well as help them determine whether biomarkers that can signal nerve cell death are present. In order to be eligible to participate, individuals must be 18 to 80 years old, have a definite diagnosis of ALS and meet other eligibility criteria. The trial is taking place at 25 trial sites across the United States, and support for travel costs may be available.

To learn more about this trial, visit ClinicalTrials.gov and enter Trial length is approximately 28 weeks, during which participants will visit with study investigators seven times in person and four NCT03127514 in the “Other Terms” search box, or contact study times via phone. coordinator Carly Doyle at 855-437-4823 or [email protected].

Quest MDA.ORG/QUEST 7 PROGRESS NOW RESEARCH AND CLINICAL TRIAL UPDATES

Charcot-Marie-Tooth disease (CMT)

Strengthening of foot and ankle Participants Sought for muscles through exercise could potentially lessen the disability caused by CMT and improve quality ACE-083 CMT Study of life for children with the disease. This will be the first test of ACE-083 in people with CMT

Researchers are looking for people with CMT1 and CMTX to participate in a phase 2 clinical trial, Exercise sponsored by Acceleron Pharma, to test the investigational drug ACE-083. May Preserve Delivered by intramus- cular injection, ACE-083 Strength is based on a naturally occurring protein and is designed to enhance the in CMT body’s own promoters of In study, progressive resistance exercise muscle growth specifically in the muscles into which strengthened muscles over a two-year period the drug is administered. Targeting the tibialis Results from an MDA-supported study conducted at the Uni- anterior (a long, narrow versity of Sydney (Australia), show that progressive resistance muscle on the front of exercise not only is safe, but it can help to significantly reduce the shin) in CMT with the the muscle weakness experienced by children with CMT. Acceleron is developing ACE-083 to treat drug could improve ankle In the study, which involved a total of 60 children with diseases in which improving muscle atrophy dorsiflexion, which could in different types of CMT ages 6 to 17, participants completed a and weakness may provide a clinical benefit. turn lessen foot drop (diffi- regimen consisting of exercising three times per week for six culty lifting the foot at the ankle, so that the toes point downward months, using a custom-built exercise cuff for the foot (similar during walking). to ankle weights commonly available in sports stores). After Total study duration for each patient will be approximately initial supervised training sessions, the children completed the 24 weeks, including a four-week screening period, a 12-week exercise regimen at home. treatment period and an eight-week follow-up period after the The investigators found that six months of moderate- last dose. intensity progressive resistance exercise could help not only To be eligible to participate, individuals must be at least age 18, slow the progression of muscle weakness by up to 30 percent have genetically confirmed CMT1 or CMTX, or have a first-degree compared to CMT patients who did not exercise, but it even relative with genetically confirmed CMT1 or CMTX and clinical led to increases in strength for the exercised muscles over signs/symptoms of CMT1 or CMTX, and meet additional criteria. a two-year period. Travel expenses for participants will be covered for mileage, It is hoped that increasing the strength of these muscles tolls and parking. Depending on distance to the trial site, partici- through an exercise routine potentially could lessen the disabil- pants also may be covered for overnight hotel stays. ity caused by CMT and prolong function, leading to improved quality of life. To learn more about this trial, go to ClinicalTrials.gov and enter NCT03124459 in the “Other Terms” search box, or To read about MDA’s current CMT-related research email [email protected]. efforts, visit mda.org/gaag.

Quest 8 WINTER 2018 Duchenne muscular dystrophy (DMD)

FDA Says ‘No’ of a nonsense mutation in the The FDA indicated DMD gene. that evidence from an In trials, the drug has demon- additional adequate to Translarna strated mixed results. In PTC and well-controlled Advisory committee determined data in support Therapeutics’ phase 3 “ACT DMD” clinical trial of Translarna, the drug clinical trial will of the drug were inconclusive failed to meet its primary end- be necessary, at a point. However, post-hoc analysis minimum, to provide PTC Therapeutics reported on Oct. indicated that the drug may slow substantial evidence 25, 2017, that it received a Complete functional decline in a subset of of efficacy. Response Letter from the U.S. Food DMD patients, while other patients and Drug Administration (FDA) were not responsive to treatment. indicating that the agency is unable Translarna received conditional approval in the European Union to approve the company’s New Drug in August 2014 for use in people with DMD caused by a nonsense Application for ataluren (brand name mutation who are at least age 5 and able to walk. Translarna) for the treatment of DMD, in its MDA has funded groundbreaking DMD research for more than current form. The company has filed a formal dispute resolution. 65 years, including early clinical testing of Translarna. Translarna is designed to act by changing the way muscle cells interpret genetic information, coaxing them to produce a To read more about the FDA decision, visit strongly.mda.org needed muscle protein called dystrophin despite the presence and search for “Translarna.”

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Duchenne muscular dystrophy (DMD) Friedreich’s ataxia (FA) Golodirsen Shows Potential to Treat DMD Exon skipping drug aims to lessen muscle weakness and atrophy Orphan Drug Designation is important to companies like Jupiter Orphan Thera- peutics, because it makes them eligible for special incentives that have been put Sarepta Therapeutics reported encouraging results from a phase in place to encourage the development of treatments for rare disorders. 1/2 clinical trial that suggest its experimental drug golodirsen may be effective as a treatment for DMD. FDA Grants Orphan Golodirsen is an exon skipping drug Drug Designation designed to slow disease progression in to JOTROL DMD. Administered by intravenous infusion, Designation encourages the development of it targets a section of treatments for rare disorders genetic code called exon 53, and may help The investigational drug JOTROL, under development by Jupi- up to 8 percent of ter Orphan Therapeutics to treat FA, has received U.S. Food boys with the disease. and Drug Administration (FDA) Orphan Drug Designation.

Although treatment with golodirsen would not Results from the JOTROL is a unique formulation of trans-resveratrol. cure DMD, it could slow progression of the disease trial, which tested Resveratrol is a naturally occurring compound that has been which, in turn, could extend the length of time boys with DMD could walk, eat independently and the drug in 25 boys investigated in a number of neurodegenerative and neuromus- breathe without assistance. with DMD, showed cular diseases, due to its positive effects on energy metabolism that treatment with and mitochondria (the “energy factories” in cells), and a host of golodirsen for approximately one year was associated with a antioxidative, anti-inflammatory and anti-aging activities. statistically significant increase in dystrophin protein production. Orphan Drug Designation may help facilitate development Muscle biopsies confirmed that all participants responded to the of JOTROL for the treatment of FA, as it provides incentives drug, as measured by increased dystrophin. meant to encourage Jupiter Orphan Therapeutics to develop The 25 boys who participated in the trial will continue to be and market it. evaluated for a total of 144 weeks, and Sarepta has said it plans to Results from an open label phase 2 trial of resveratrol release study data at a future medical or scientific conference. conducted by Murdoch Children’s Research Institute in Mel- Golodirsen also is being evaluated in the ongoing phase 3 bourne, Australia, showed that participants taking resveratrol ESSENCE study in boys with DMD gene deletions amenable to skip- demonstrated improvement of neurological symptoms. How- ping exons 45 or 53. This trial currently is recruiting approximately ever, treatment with higher doses of the drug was associated 100 people to participate at sites across the United States, Canada with gastrointestinal (GI) tolerability issues. Jupiter Orphan and Europe. Therapeutics has said it plans to conduct a larger placebo- MDA has been central to development of the exon controlled study designed to assess whether treatment with skipping approach. JOTROL can generate the same beneficial effects without the unwanted GI side effects. For more information about the ESSENCE trial, visit ClinicalTrials.gov and enter NCT02500381 in the “Other To read about MDA’s current FA-related research Terms” search box. efforts visit mda.org/gaag.

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GNE myopathy/HIBM Ultragenyx Discontinues Ace-ER Program Trial results showed no benefit, as compared to placebo

Ultragenyx Pharmaceutical those treated with Ace-ER tools associated with the announced that a phase 3 as compared with those who trial for the development study to evaluate aceneuramic received a placebo. Therefore, of other therapies. acid extended release (brand Ultragenyx has said it will not name Ace-ER) for the treat- file with the U.S. Food and ment of GNE myopathy, also Drug Administration (FDA) for Natural history data and development tools for known as hereditary inclu- approval of Ace-ER and has the trial will be made available to help inform the development of other therapies. sion-body myopathy (HIBM), discontinued further clinical and Nonaka myopathy, failed development of the drug. to meet its primary and key The company reported it secondary endpoints. will work with investigators If you participated in the Ace-ER trial, be sure to Results showed no signif- and patient groups to make speak with your physician about any questions you icant difference in the upper available the valuable natural may have regarding your trial experience and treatment plan extremity muscle strength of history data and development going forward.

CMY

www.symmetric-designs.com | tf 1.800.537.1724 Mitochondrial myopathy Orphan Drug Designation allows for special incentives to FDA Grants Orphan encourage the development of treatments for Drug Designation rare disorders. of the energy in an organism. to better characterize and cor- to Elamipretide Orphan Drug Designation relate symptoms and signs of In studies, treatment was associated with may facilitate development of myopathy, genetic test results clinical benefits elamipretide for the treatment and the use of commonly of mitochondrial myopathy prescribed treatments. Partic- The investigational drug elami- production in mitochondria by providing incentives meant ipants in the RePOWER study pretide, under development and decrease oxidative stress, to encourage companies like may have the opportunity to by Stealth BioTherapeutics to an imbalance between the Stealth BioTherapeutics to participate in a future phase 3 treat muscle weakness caused production of free radicals and develop and market drugs for trial for elamipretide. by mitochondrial disease, has the body’s ability to neutralize rare disorders. received U.S. Food and Drug them. Mitochondria are small, Stealth BioTherapeutics To learn more about the Administration (FDA) Orphan essential organelles that currently is recruiting partici- observational study of Drug Designation. populate every cell of the pants for its RePOWER trial, an individuals with mitochondrial Elamipretide is designed body and are often referred observational study of people disease, visit ClinicalTrials.gov to modify disease by help- to as the “powerhouse of the with primary mitochondrial and enter NCT03048617 in ing restore normal energy cell,” since they generate most disease. RePOWER is designed the “Other Terms” search box.

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Myasthenia gravis (MG)

Treatment with Soliris will not cure generalized MG, but it may FDA Approves Soliris improve disease symptoms, the ability to carry out activities of Soliris becomes the first in a new class of drugs to be approved daily living and quality of life. for MG in the U.S.

Alexion Pharmaceuticals announced on Oct. 23, 2017, that the responsible for helping antibodies clear damaged cells and is U.S. Food and Drug Administration (FDA) approved eculizumab inappropriately activated by antibodies present during MG. Soliris (brand name Soliris) as a treatment for adults with generalized is thought to work in MG by inhibiting the complement pathway to myasthenia gravis (MG) who are anti-acetylcholine receptor prevent destruction of the neuromuscular junction. antibody-positive. If you are interested in adding Soliris to your treatment reg- Soliris was tested in clinical trials in people who had previ- imen, you should speak with your health care provider, who will ously failed immunosuppressive treatment and continued to initiate treatment, if appropriate. suffer from significant unresolved disease symptoms such as difficulties seeing, walking, talking, swallowing and breathing. If you are interested in Soliris, speak with your health Participants taking Soliris had improved scores on scales care provider about whether the treatment is right for designed to assess quality of life and symptom burden includ- you. You may learn more by visiting info.soliris.net/gmg-patient ing double vision, ptosis (drooping of the eyelids), swallowing, or calling 1-888-SOLIRIS to speak with a nurse case manager speech, breathing, and use of arms and legs. through OneSource, a patient support system from Alexion Soliris is a terminal complement inhibitor that targets a part Pharmaceuticals, the manufacturer of Soliris. The Alexion nurse of the immune system called the complement system, which is case managers can answer your questions about Soliris. Pompe disease (acid maltase deficiency, AMD) Spinal muscular atrophy (SMA) FDA Grants Orphan Drug Designation Designation encourages the development of treatments for rare disorders STR1VE The investigational combination drug therapy ATB200/AT2221, under development SMA Gene by Amicus Therapeutics to treat Pompe disease, or AMD, has received U.S. Food and Drug Administration (FDA) Orphan Drug Designation. Therapy Amicus Therapeutics’ combination drug strategy pairs ATB200, a synthetic acid alpha-glucosidase (GAA) enzyme that is deficient in Pompe disease, with AT222, a companion drug that helps the therapeutic GAA enzyme be more effective. AT222 is Study a “pharmacological chaperone,” designed to protect the GAA enzyme while it is circu- Participants sought lating in the bloodstream. Data from previous studies suggest that co-administration to test efficacy of of the two drugs results in enhanced uptake and activity in muscle tissue of the replacement enzyme. gene replacement Orphan Drug Designation may help facilitate development of ATB200/AT2221 for the treatment of Pompe disease, as it provides incentives meant to encourage Amicus Therapeutics to develop and therapy market it. Researchers are looking A phase 1/2 clinical trial currently is underway to test the combination therapy in Pompe disease. for individuals with type 1 SMA to participate in the For more information about the phase 1/2 trial, visit ClinicalTrials.gov and enter phase 3 STR1VE clinical trial, NCT02675465 in the “Other Terms” search box. sponsored by AveXis, to > PROGRESS NOW RESEARCH AND CLINICAL TRIAL UPDATES

Spinal muscular atrophy (SMA) continued from previous page test efficacy for its SMA gene To be eligible to partici- FIREFISH replacement therapy AVXS-101. pate, individuals must be under Administered by one-time 6 months old, have one or two SMA Study intravenous infusion (a needle copies of the SMN2 gene, and inserted into a vein), AVXS-101 meet additional criteria. Participants needed for is designed to deliver a gene Trial sites are located in phase 2 trial to test RG7916 that can produce the Survival California, Colorado, Illinois, Motor Neuron (SMN) protein. Maryland, Ohio, Oregon and Researchers are looking for individ- SMN is critical to the function New York. Travel assistance uals with type 1 SMA to participate of the nerves that control may be available for families in the phase 2 FIREFISH clinical trial, muscles and is missing in indi- who don’t live near one of the sponsored by Hoffmann-La Roche, to viduals with SMA. Increased research centers. test the investigational drug RG7916. Goals of the trial include production of the protein may A liquid medication, RG7916 is assessment of the safety, toler- lead to improvements in mus- To learn more about delivered once daily by mouth or ability and efficacy of RG7916 in type 1 SMA. cle strength and function. this trial, go to through a feeding tube. All participants in the open- ClinicalTrials.gov and enter RG7916 is an SMN2 splicing modifier that distributes label STR1VE study will receive NCT03306277 in the “Other throughout the entire body. It is designed to modify SMN2 treatment with the experimental Terms” search box, or visit messenger RNA splicing and increase levels of the needed therapy. Study-related visits, studysmanow.com and email SMN protein. (RNA is the chemical step between DNA and tests and treatments will be pro- the trial coordinator at the protein production.) vided to participants at no cost. site nearest you. All participants in the open-label FIREFISH study will receive treatment with the experimental therapy. In addition, they will receive all study-related procedures and exams, including physical exams, motor function tests, CMAP (testing that assesses the interaction of muscles and nerves during activity), blood sample testing and eye examinations. Participation is expected to last 24 months. To be eligible, individuals must be ages 1 to 7 months, have a confirmed diagnosis of SMA, have two copies of the SMN2 gene Magical M ments (confirmed by testing) and ...served one spoonful at a time meet additional criteria. U.S. trial sites are located in California and New York, and travel support may be available for families who don’t live nearby. meetobi.com To learn more about this trial, go to ClinicalTrials. gov and enter NCT02913482 in the “Other Terms” search box.

THRIVE 365 HEALTH, WELLNESS AND INDEPENDENT LIVING Startup Support How to take the lead and create a support group for your community

BY LESLIE KRONGOLD, Ed .D.

of Texans with MG and their families and friends. Through this network, Young identified a co-facilitator, who was a caregiver for her grandmother, and the two of them “got the word out to get people talking,” Young says. This included sending out Facebook messages and notifying other people in the area. Once they found a meeting place and set up monthly meeting times, they connected with two patient advocacy organizations, as well as the local neurologist, Author Leslie Krongold (far right) meets with a support group. to help spread the word about the meetings. nce I was group facilitator still is a title to launch an MG support Delegating responsibili- diagnosed with I proudly wear. group in her town. ties has been the key to the Omyotonic muscular She started by contacting group’s success. For example, dystrophy (DM), I sought START YOUR GROUP the Houston support group “We have a greeter, and that a support group to learn What I’ve witnessed facilitator, who introduced person’s job is to greet every- more about my disease and anecdotally in my own Young to a larger network one who comes in,” Young meet others with the same support groups is backed diagnosis. Shortly after I by evidence-based research: began attending, the facil- Social support experienced by VIRTUAL SUPPORT GROUPS itator left the group and I support group participants was asked to take over her improves coping skills, lowers When meeting in person is not feasible, some groups responsibilities. Talk about depression and enhances qual- create a virtual presence. A virtual group leader deter- trial by fire. ity of life. But not everybody mines the platform and organizes meetings or activities, This experience dramat- has access to these benefits. similar to an in-person group. Technology provides multi- ically changed the course of Tracey R. Young, of ple ways to do that. Here are a few: my life. Not only did I meet Beaumont, Texas, recalls • Start a private Facebook group and invite others to join wonderful families impacted how excited she was to meet (facebook.com). by neuromuscular diseases, and learn from peers at her • Start a Meetup group that allows others in your area — but I connected with orga- first myasthenia gravis (MG) or even around the world — to join (meetup.com). nizations providing services support group meeting. The • Use a free audio conferencing service to schedule and resources for people with problem was that the meeting group conference calls. varying levels of abilities. was in Houston, 100 miles • Set up Skype video chats (skype.com). Twenty years later, support away. That prompted Young

Quest 18 WINTER 2018 attendees, the critical aspect to any meeting is good, clear Contact MDA’s CONSIDERING LOGISTICS communication. This includes Resource Center Although the stereotype of a support group may con- your communication with MDA’s Resource Center jure an image of people sitting in a circle taking turns the group, creating a safe is an informational hub sharing feelings, many groups also incorporate educa- environment to encourage for families living with tion and involve guest speakers, or meet in restaurants participants to speak, and neuromuscular disease. for social connections. Determining the meeting format ensuring that any guest Contact the MDA Resource is part of establishing your group’s logistics: speakers provide helpful Center at 800-572-1717 or Identify a meeting location. The best meeting place is information. resourcecenter@mdausa. a public location that is ADA accessible (including the org. MDA’s trained resource restrooms). Explore hospitals, libraries and places of A SAFE SPACE specialists are available worship. Take parking and public transportation options In my experience, the biggest Monday through Friday, into consideration. challenge in facilitating a 8 a.m. to 5:30 p.m., Central Determine your meeting frequency. Try not to over- support group is handling time, to answer questions schedule in the beginning. Once your group starts to open conversation. A facilita- and provide one-on-one gel, you may opt to meet more frequently. Be sure to tor’s goal is to draw out the support and resources. publicize your meeting at least one month ahead of quietest people. There is often They typically are able to time to give attendees time to plan. a fine line between keeping answer questions within Choose a meeting format. Select a time and day that the conversation energized 24 hours of a request (or on works well for you. No time will work for everyone, and interesting while not the next business day). If but your presence is critical. The average duration of a allowing someone to dom- you attend or lead a support support group meeting is two hours. Some families will inate. My skills in this area group in your area, contact travel up to two hours to attend the meeting; make it have improved over the years. us today so we can include worth their while. Strive to become a better lis- that information in our Make a plan. Create an agenda to structure the tener and gauge the unspoken resource referral database. time. Allow for introductions, presentations or guest communication in the room. speakers, and discussion. Start and end the meeting And sometimes you may DO IT FOR YOUR on time; don’t penalize the punctual. Bring healthy need to exercise the refrain, COMMUNITY refreshments, and consider sharing this responsibility “Let’s take this offline,” where Receiving a difficult diagnosis with participants. appropriate. for yourself or a loved one To establish a safe envi- can make you feel alone. But ronment for everyone, draft you’re not. There is a commu- explains. “It does two things: burnout, she rebooted the ground rules to discuss with nity of individuals in a similar It makes new people feel wel- group two years ago with the the group. Most important situation. And if you can’t find come, and it gives that person help of a co-facilitator. “That is for everyone to respect a support group for that com- purpose beyond themselves helps tremendously,” Smith confidentiality and refrain munity, chances are others to actually commit to being at explains. “You have a buddy to from crosstalk when someone need it just as much as you do. the support group meeting.” talk with if no one shows, and is speaking. Melissa Byrne, So don’t be afraid to become if you end up with a full room, a clinical social worker in a support group facilitator. It SHARE THE WORK you have help keeping things Richmond, Va., who facilitates will become a title that you Especially for a peer facilita- organized and a good flow.” an ALS support group, invites proudly wear, too. Q tor — someone who shares A support group facilita- participants to contribute the same diagnosis as the tor’s main function is to plan to the guidelines through a Leslie Krongold, Ed.D., 55, lives group — it’s helpful to have and guide the meeting so that survey. The feedback “shapes in Alameda, Calif. After 20 years a co-facilitator. Suzette Smith all participants leave feeling group topics, provides insight of support group facilitation of Indianapolis, whose adult a little better than when they into their experiences and and training peer and caregiver son has myotonic dystrophy, arrived. Although having encourages us to make support group facilitators, she’s launched a support group 15 tasty refreshments can go a changes when appropriate,” taken her passion to a podcast/ years ago. After experiencing long way toward satisfying says Byrne. blog at GlassHalfFull.online.

Quest MDA.ORG/QUEST 19 THE

APPROACHteam Multidisciplinary care improves quality of life for individuals with neuromuscular diseases

BY KAREN HENRY

Brendan is a curious, bright-eyed 7-year-old with a fun-loving attitude and a buoyant smile. He was diagnosed with Duchenne muscular dystrophy (DMD) when he was B23 months old. His mother, Colleen Labbadia, describes his diagnosis as long and heartbreaking but adds that there has been a bright spot. “Brendan is seen at the MDA Care Center at Nemours Children’s Hospital in Orlando, and we absolutely love it,” she says. “They have been our silver lining.”

Quest 20 WINTER 2018 Quest MDA.ORG/QUEST 21 Brendan, 7, diagnosed with DMD, has a multidisciplinary care team that includes a physcial therapist and other related specialists. range of disciplines in one location to provide coordinated, patient-centered care. A recent study showed that this is the gold standard model of care for individuals with complex medical needs. MDA is committed to ensuring that the MDA Care Center network operates with a multidisciplinary approach. MDA Care Centers include strong medical teams, but they don’t just have doctors. In addition, each MDA Care Center includes a social worker, a physical therapist and a care center coordinator. (See “Specialists at a Glance.”) Beyond this framework, the specialists included on an “ Brendan is seen Nothing about living with comprehensive multidisci- MDA Care Center team vary neuromuscular disease is easy plinary care. based on the conditions they at the MDA Care or convenient. Effectively The MDA Care Center at manage and the age range of Center at Nemours managing progressive muscle Nemours is just one of the the individuals they work with. weakness as well as the vari- more than 150 MDA Care Likewise, not all MDA Care Children’s Hospital ous associated complications Centers across the United Centers function in exactly the in Orlando, and we individuals may experience States and Puerto Rico that same way. At some MDA Care requires an equally varied list provide multidisciplinary care Centers, individuals will see absolutely love it. of specialists. to individuals with neuromus- all their relevant specialists They have been Brendan’s health care pro- cular diseases. during every visit, while at our silver lining.” viders include a neurologist, others, the directing physician physical therapist, occupa- WHAT IS will recommend that individ- — Colleen tional therapist, cardiologist, MULTIDISCIPLINARY uals see some specialists more Labbadia orthopedist, endocrinologist CARE? or less frequently. and nutritionist. These Multidisciplinary care brings For example, at the MDA professionals work as a team together the expertise of Care Center at Johns Hopkins to provide Brendan with professionals from a wide University in Baltimore, Md.,

THE IMPORTANCE OF SOCIAL WORKERS For individuals and families living with neuromuscular Zebberman looks at the overall health and stability of diseases, having access to the right support is paramount children and their families as it pertains to their finances, social to living life to the fullest. But so is everyday help, and that’s and emotional health, and education. She works with each where an MDA Care Center social worker comes in. A individual and their family to come up with resources to make social worker is a counselor, advocate, educator, facilitator, life easier, such as information about adaptive equipment, resource specialist and problem-solver all rolled into one. financial aid and community resources. She also provides Hillary Zebberman is a licensed clinical social worker education to schools about neuromuscular diseases to ensure at the MDA Care Center at University of California, Los students have access to the accommodations they need to be Angeles (UCLA). “I’m not a therapist, but I can identify successful. problems and direct parents where to go to get help,” “There are so many things that social workers can do to she says. add a dimension of support,” she says.

Quest 22 WINTER 2018 the disciplines represented on its multidisciplinary care team Expert Care from include neurology, pulmon- Day One ology, cardiology, physical We know early diagnosis, therapy, occupational ther- highly specialized care apy, genetic counseling and and access to promising orthotics. MDA Care Center clinical trials help ensure Director Thomas Crawford, the best possible outcomes M.D., a neurologist, says his for individuals and families approach is to refer patients to living with muscular specialists when their needs dystrophy, ALS and related in a particular area extend neuromuscular diseases. Jerry Creehan beyond the basics. MDA has more than 150 “When you go to see a lot Care Centers across of specialists, it can be kind of the United States and in overwhelming,” Dr. Craw- Puerto Rico located at top ford says. “I like the model of hospitals and health care having a person like myself facilities. Go to mda.org and who thinks about all things type in your state or ZIP related to muscular dystrophy BENEFITS OF “ I have been in and code in the “Find MDA in and spinal muscular atrophy, MULTIDISCIPLINARY Your Community” box to so when you come and see me, CARE around hospitals find an MDA Care Center we are going to cover all of When everyone is working all my career, near you. You also can those territories. If we need to together toward a patient-cen- contact the MDA Resource spend extra time on a partic- tered care plan, the benefits but I have never Center at 800-572-1717 or ular domain, I’m going to get for individuals and families experienced that resourcecenter@mdausa. a specialist who knows even are far-reaching. Research has level of care in a org for assistance with more about that domain. In shown that multidisciplinary locating an MDA Care that way, we don’t waste time.” care can have a positive clinical setting.” Center in your area. impact on those with neuro- — Jerry Creehan COMMUNICATION muscular disease in a number IS KEY of ways. Regardless of how they are structured, the most success- 1. Quality of life he had something special. ful multidisciplinary teams Jerry Creehan, a 65-year-old Not only was he impressed prioritize good communi- retired medical equipment with the amount of time his cation, and they are able to salesman and father of three, neurologist and other care provide a comprehensive and can attest to the impact of providers spent with him, but coordinated care plan because multidisciplinary care. After he was amazed at the level of they have spent time thinking being diagnosed with ALS compassion, care and respect about what it means to work in January 2017, he started each one showed. as a team, what it takes to visiting the MDA ALS Care “I have been in and around provide good care and how to Center at Virginia Common- hospitals all my career, but deliver care effectively. wealth University Medical I have never experienced The multidisciplinary Center in Richmond, Va. that level of care in a clinical team at Nemours is a good Creehan’s multidisciplinary setting,” he says. “I had been example of this. “Not only care team includes a neurol- told that being seen by a mul- are all of Brendan’s doctors ogist, respiratory therapist, tidisciplinary care team can under one roof, but they physical therapist, regis- add length to life for an ALS share everything — their tered dietician, social worker, patient. I knew right then notes, their assessments, what research coordinator and and there why. It didn’t mean medications they put him on,” MDA family care specialist. that they were going to catch Labbadia says. “Everyone is From his very first me in some crucial stage and on the same page.” appointment, Creehan knew intervene medically, but all

Quest MDA.ORG/QUEST 23 in Nashville referred her to SPECIALISTS AT A GLANCE Sarah Whyte, a certified and licensed speech-language How is a pulmonologist different from a cardiologist? It can be confusing. Here is a guide pathologist. Whyte told her to some of the specialists you are likely to meet at your MDA Care Center. about voice banking, a process where an individual records Neurologist or Social Worker Physical Therapist their speech to be used as Physiatrist Social workers help Physical therapists a personal synthetic voice. Most MDA Care with the practical identify muscle Mishler’s speech was intact at Centers are aspects of illness weakness and the time, so she and Whyte directed by a and disability joint tightness and decided to act quickly to take neurologist or (insurance reim- develop treatment advantage of the timing and physiatrist. These bursement, financial plans to maintain the technology. physicians specialize aid, equipment and and improve muscle “Because I saw her very in diagnosing and housing needs, trans- strength and range of early in her disease progres- treating neuromus- portation, home care, motion. They sion, we were able to bank cular diseases. community resources, also can provide her voice, which she now etc.). They alo can adaptive equipment uses with an eyegaze device,” help families cope with recommendations. Whyte says. Care Center diagnosis and disease Patricia uses her eyegaze Coordinator progression. device to generate speech and These coordinators MDA Family Care operate her computer with her may be nurses, nurse Specialist eyes. “My MDA Care Center practitioners, genetic Cardiologist MDA’s Family Care is always ready to help me counselors or other Cardiologists specialize Specialists attend improve the quality of my life,” providers. They offer in the heart and cardio- MDA Care Cen- she says via email. families support vascular system. They ter sessions to and information and monitor heart health represent MDA and 3. Streamlined care can help connect and function and serve as a resource Having multiple experts people to community treat heart conditions to families receiving observe an individual’s move- resources that offer that occur as a result care there. ments and functions during a additional assistance. of neuromuscular single visit increases a clini- disease. cian’s ability to recommend and implement therapies and adaptive equipment. Occupational Therapist Pulmonologist Lynn Lukins, a licensed Occupational therapists Pulmonologists specialize in disorders physical therapist at the provide strategies and of the lungs and respiratory muscles. Kids Center for Pediatric tools to help people These doctors typically work with Therapies in Louisville, Ky., accomplish daily activ- respiratory therapists to monitor works as part of the pediat- ities in their home and lung and respiratory health and ric MDA Care Center at the work environments. recommend breathing exercises and University of Louisville. The breathing aids, when needed. therapists there use a team approach to assess the needs of the children and families that love and care makes me Mishler optimize her commu- they serve. want to come back.” nication strategies before she “We all observe the child lost the ability to speak as a during each screening, so 2. Proactive care result of ALS. while the speech therapist is When clinicians work as a Mishler was diagnosed watching swallowing, breath- team, they are able to take a with ALS three years ago. Her ing and vocalizations, I can more proactive approach to neurologist at the MDA ALS be looking at posture, weight care. This type of teamwork Care Center at Vanderbilt shifting and preferred position helped 75-year-old Patricia University Medical Center for play, and the OT can be

Quest 24 WINTER 2018 Patricia Mishler with her husband, Roger To ensure the necessary “ My MDA Care services are available during each visit, Cox coordinates Center is always appointments for each individ- ready to help me ual. “It can take me a couple of months to coordinate just improve the quality one of our multidisciplinary of my life.” clinics because we tailor each visit to meet the patient’s — Patricia Mishler needs,” she says. Labbadia says that kind of care coordination is well worth the wait. “Getting all of these amazing doctors together watching fine motor activities,” the travel burden associated talking about specialty care for she says. “We are then able to with seeing multiple special- your child is wonderful. That more effectively and quickly ists. “Most of the people in kind of expert care allows us provide evaluations and rec- our community have mobility a sigh of relief because we are ommendations to the physician issues, and transportation can not left hanging when issues and family.” be challenging,” says Theresa come up. It’s done right then Cox, clinic coordinator at the and there.” Q 4. Practical efficiency MDA Care Center at Johns Among the advantages to Hopkins. “Being able to come Karen Henry is a freelance being seen by a multidisci- to the clinic and see all of your writer and editor living with plinary care team, the most providers on the same day is limb-girdle muscular dystrophy impactful might be reducing really helpful.” (LGMD) in the Denver area.

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CONTROL

Jared Aronson

Quest 26 WINTER 2018 Creative BY DONNA SHRYER

CONTROLJared Aronson embraces life with imagination and laughter

“ I believe that if you are laughing, you are living.” This is 34-year-old Jared Aronson’s mantra. And he’s not particular about what deserves a good guffaw. He’ll laugh out loud over a clever play on words, a ridiculous Twitter post or even a temporary misfire as he masterminds yet another invention. Inventing is what fuels Aronson’s mojo. “I love problem-solving,” he says. Aronson’s life situation And passion he has. When often sparks his inventive he talks about his creative imagination. He has endeavors, an effervescent fer- Duchenne muscular dystro- vor bubbles up like a fine glass phy (DMD), has been using of champagne. In Aronson’s a wheelchair since age 6, has case, it’s a fitting analogy. been ventilated since age 18, There’s so much to toast! and he can no longer move his limbs or digits. But that’s TEEING UP all he cares to share about his To begin at the beginning, disease. It’s a reality he lives Aronson is an artist. He’s with, not what defines him. always been drawn to draw- “Just because you have a dis- ing. So, in 2004, he blended ability doesn’t mean you don’t his love of sketching with his have creativity and passion,” entrepreneurial spirit and A Madhouse Tees design Aronson emphasizes. opened the virtual door to

Quest MDA.ORG/QUEST 27 FOCUS ON: ADAPTIVE EQUIPMENT

INNOVATIVE ASSISTIVE TECHNOLOGY PRODUCTS

Today’s8 technological advances don’t just empower solo This hands- 5. LUCY4. inventors like Jared Aronson — they also have led to some free keyboard is operated seriously life-enhancing assistive technology (AT) products. by a small, lightweight laser AT products, which include all manner of assistive, adaptive pointer that clips to a head- and rehabilitative devices, share one goal: enabling individ- band or eyeglasses. Slight uals with disabilities to perform tasks that were formerly head movements (only a cou- beyond their physical capabilities. ple of centimeters) activate the keys on the keyboard. It Here’s a roundup of some of the most innovative can also be controlled by joystick, mouse or switch. AT products on the market: (touchthefuture.us/product/lucy4)

1. GlassOuse. These smart eyeglasses allow hands-free 6. Magic Flute. The Magic Flute is a hands-free elec- control of Bluetooth-enabled devices. The cursor tronic wind instrument that enables an individual to play on the device screen follows the user’s head music with small head movements and breaths. Breath movements. The mouse is activated by biting strength can be adjusted to allow vent users to play, and or pressing the “click” button. (glassouse.com) switch control can be used for functions. (touchthefuture. us/product/magic-flute) 2. HouseMate. This petite device enables users to control their environment and operate appliances 7. Neuronode. Developed by Control Bionics, the with a smartphone. It works with WiFi, Bluetooth, Neuronode is a wearable device that uses the body’s infrared and z-wave connections. Users can oper- bioelectric electromyographic (EMG) signals to control a ate the system with switches, joystick or voice. computer. The NeuroNode wireless sensor is placed on the (touchthefuture.us/product/housemate-pro-z- skin over the muscle chosen to act as the switch. When the for-android) user attempts to move that muscle, NeuroNode detects EMG signals, even if there is no visible muscle movement. 3. Jamboxx Pro. This harmonica-style electronic (controlbionics.com/neuronode) instrument connects to a computer and is activated with side-to-side head motions. The device comes with its own 8. QuadJoy. This advanced software, a range of sounds and backing tracks. It also inte- sip-and-puff mouse provides grates with Apple’s GarageBand. (jamboxx.com) computer access and functionality via head 4. LipStick Mouse. This computer mouse works motions, inhalations and with just the slightest lip movement. Because no sip- exhalations. Features include 100 percent plug-and-play and-puff switch is required, the LipStick also can be manip- USB, Bluetooth connectivity and programmable capabilities ulated with thumb and forefinger. touchthefuture.us/( that allow a user to personalize functions. (enablemart.com/ product/lipstick) quadjoy-3-usb-and-bluetooth)

Madhouse Teeshirt Designs to maneuver the computer platform and the software LLC (madhousetees.com), mouse. Give up? Dissolve used to program it. Ardu- an online store that sells Madhouse Tees? Absolutely inos are designed to make screen-printed T-shirts with not. This was the sort of chal- electronics more accessible his original artwork. lenge that triggers Aronson’s to artists, designers, hobby- Originally, Aronson problem-solving skills. ists and anyone interested in generated his drawings with “I needed to come up creating interactive objects or pen and ink. Then he moved with a way to draw,” Aron- environments. onscreen, using Adobe Photo- son recalls. First, he taught “After messing around shop and Illustrator. However, himself how to program for a while, I figured out the as his muscle strength Arduino microcontrollers, programs so I could control diminished, he lost the ability an open-source electronics my computer and develop

Quest 28 WINTER 2018 my own sip-and-puff mouse,” Aronson says. “I created the device for about $50, and it works great.” (Retail prices for sip-and-puff devices gen- erally range from $200–$800.)

DRIVEN TO SUCCEED With Madhouse Tees under control, Aronson needed a new challenge. Enter Rhino Buttons, another assistive device he designed out of necessity. “I used to drive my chair with a joystick, but when I got too weak for that, I changed to another driving system using a switch,” Aronson explains. “After a while, I realized that these $85 switches were pretty high maintenance. If I didn’t clean the buttons often and carefully, they stuck. So, I’d be driving around, the switch would stick, and I’d hit a wall — or whatever else was in the way. I thought it was a riot.” But even while he was laughing, the wheels in Aronson’s brain were turning. An out-of-control wheelchair makes for funny antics, but it was also dangerous. He set out to design a safer, more reliable switch. To start the creative process, Aronson purchased a 3D printer to produce various button prototypes. Using his knowledge of electronics, he experimented with different designs and electronic com- ponents. His design needed to replicate the feather-light sen- sitivity of the switches already on the market but without the sticking issue. After two years of trial-and-error, he finally had a product that solved the sticking problem. FOCUS ON: ADAPTIVE EQUIPMENT

It was time to go pub- siblings and too many dogs Although Heck’s show cov- Online Exclusive lic. And with that, Aronson to count. “I grew up in a busy ers a wide range of builds, he Read “A World of opened his second online house, and I was never treated occasionally focuses on projects Opportunities,” a Quest store, rhinobuttons.com, differently than anyone else. for individuals with disabilities. online exclusive article, where shoppers and retailers I never thought of myself as In one such episode, Heck built a to learn how other MDA can purchase his uniquely the ‘disabled one.’ That had a power wheelchair with foot con- families are using innovative designed switches. big impact on me; I think it’s trols. “A viewer wrote to Heck do-it-yourself adaptive To make his product why I’m so motivated. If I had because he needed a hands-free equipment solutions to accessible, Aronson priced his an idea, everyone in my family wheelchair, so he could move improve everyday life. switches below his compet- would say, ‘Just do it.’” around and hold his new baby,” Find it at mda.org/quest. itors. “I want everyone who Aronson also draws inspi- Aronson recalls. “Heck is a needs this switch to be able to ration from members of the genius. He’s amazing.” afford it,” he says. Maker Movement, a trend in So what equally amazing which individuals or groups invention is next on Aron- FUELING THE SPARK create technology products son’s list of things to do? “I While the need to invent “a using upcycled materials from just bought 3D animation better mouse trap” typically computers, game consoles or software. I’ve been told I have ignites Aronson’s drive to other electronic devices. Ben a pretty good sense of humor, create, he’s quick to share Heck, an internet celebrity so I’m going to write these credit with a few key influ- among the Maker commu- scripts for animated charac- encers. To begin with, there’s nity, is one of several Makers ters and create little vignettes. his father, who often steps that Aronson follows closely. It’s my new adventure. Let’s up to literally assemble what Every Friday, he clicks into see where it takes me.” Q Aronson sees in his mind’s eye. YouTube and watches “The Then there’s his whole family, Ben Heck Show,” where Heck Donna Shryer is a freelance which includes his parents, five presents a new project. writer in Chicago.

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WARNINGS Increased risk of bleeding complications has been observed after administration of similar medicines. Your healthcare provider should perform blood tests before you start treatment with SPINRAZA and before each dose to monitor for signs of these risks. Seek medical attention if unexpected bleeding occurs. Increased risk of kidney damage, including potentially fatal acute inflammation of the kidney, has been observed after administration of similar medicines. Your healthcare provider should perform urine testing before you start treatment with SPINRAZA and before each dose to monitor for signs of this risk.

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MANUFACTURED FOR Biogen, Inc. Cambridge, MA 02142 revised 05/2017 MDA’s New President & CEO Six Questions with Lynn O’Connor Vos

Global health care leader Lynn O’Connor Vos joined the Muscular Dystrophy Association last fall as its new president and CEO. With a clinical nursing background and decades of experience building and gleading health companies to drive technology and innovation in patient care, Lynn says her entire career has led to this unprecedented moment with MDA.

Quest MDA.ORG/QUEST 33 Lynn recently sat down MDA’s National Commu- to answer questions submit- nity Advisory Committee ted from Quest readers and this year and families at our families as she takes on this upcoming conferences and new role. events throughout 2018. I’m also excited to attend several Why did you choose to MDA Summer Camps, which come to MDA? I understand are the best When I learned about the week of the year. opportunity to lead MDA, In addition to my time it felt like my entire career with families, MDA just com- was coming full circle. I have pleted a survey of thousands decades of experience in the of individuals living with commercial and nonprofit sec- or caring for someone with tors transforming health care a neuromuscular disease to organizations and driving better understand needs, gaps lasting change, but I started in care, challenges and oppor- my career as a pediatric nurse. tunities to pave the way for Focusing on patient and how MDA can truly facilitate family care at MDA feels like change for our families. I’m returning to my roots. looking forward to sharing With tremendous progress the findings with you and underway as an unprecedented what it means for new and Lynn is pictured with Pat Quinn (seated), Lynn spent the past 23 number of new therapies and enhanced programs at MDA co-founder of the Ice Bucket Challenge, and Mark Longmore (Pat’s personal years as CEO at Greyhealth drugs to treat neuromuscu- later this spring. care attendant). Group (ghg), a leading health lar diseases are becoming care communications agency available, I believe my deep After four months on where she forged relation- understanding of the drug the job, what do you see ships and partnerships with approval process and the way as the most exciting or institutions, providers and to work with industry part- promising opportunities nonprofits to effect change ners, clinicians, researchers for MDA and our and make a lasting impact in and providers will help break community? health care. new ground in neuromuscular My first priority since joining At MDA, Lynn will disease research and care. I MDA has been to listen, continue all the great work came to MDA to help improve learn and become immersed the organization is known the lives of more families in all areas and levels of our for — like funding new and and transform their health organization. I’ve spent a innovative research; part- care experience. I’m looking lot of time with MDA staff, nering with the nation’s top forward to partnering with volunteers, neuromuscular medical institutions to advance our community to make disease experts, industry and care and drive more clini- that happen. corporate partners — and of cal trials for MDA families; course, families — to deter- facilitating knowledge-sharing How do you plan to get mine where we can make and best practices for health to know MDA families? the greatest impact for the care experts; and providing MDA families are at the heart MDA community. From day day-to-day help and resources of what makes this organiza- one, I’ve found myself having for individuals and families tion so special. I’ve had the many “ah-ha” moments about living with neuromuscular distinct fortune of meeting the brightness of our future. diseases. She will expand that many families already at local We have so many possibilities work by growing relationships and regional MDA events, in new therapies, growing with influential partners and and my goal is to continue knowledge in genetics, oppor- helping drive innovation and to listen and learn from our tunities to apply innovation in technology to transform and families as much as possible. care and the ability to bring save more lives. I will be spending time with the same boldness that once

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Volunteer Whitney Jorgensen dedicates time to MDA in many ways, including as an MDA Summer Camp counselor.

From Summer Camp to Shamrocks MDA Ambassador’s MDA Summer Camp experience inspires her work with the Shamrocks campaign

When Whitney Jorgensen, a managers and be a face of the a camper ride a horse for the for these kids,” she says. “I 25-year-old MDA Shambassador program and explain that this first time — something he had love when cashiers reach their from Farmington, Utah, visits money is helping kids that I wanted to do his whole life. goals, and we get to celebrate stores in her area that partic- know,” she says. “That memory leads to all that together. It’s a win for all ipate in the MDA Shamrocks Jorgensen, who works for of the other experiences, of of us. Those connections are campaign, she knows firsthand University of Utah Health, has making things possible,” says what keep me going with MDA how much the fundraising pro- volunteered as a counselor at Jorgensen. “Nothing is impossi- Shamrocks.” gram does for individuals and MDA Summer Camp every ble at Summer Camp.” families in the MDA community. year since 2011. Her cousin, Jorgensen explains that shar- For the past 35 years, “It’s a really good experi- whose father has muscular ing these experiences with the MDA has partnered ence to be able to go to these dystrophy, introduced her to employees she visits at Sham- with more than 25,000 retail stores and talk to cashiers and MDA, and Jorgensen, her sister rocks-participating businesses locations to raise more than and her cousin have all been helps put their fundraising $300 million through the MDA Summer Camp volunteers. efforts into perspective. Shamrocks program. Look for In Jorgenson’s seven years “I see the work that the participating partners in your of volunteering, she has seen employees put into the community this MDA Sham- the impact Summer Camp has program, and I can show them rocks season, and visit mda. on the campers. One of her where the money is going and org/shamrocks to learn how favorite memories is watching what their efforts are providing you can get involved.

Quest MDA.ORG/QUEST 41 ACCESS MDA NEWS AND UPDATES FROM THE MDA COMMUNITY Having a Ball Bowlers raise money for families at the Oshkosh MDA Bowl-A-Thon

Eric Salzwedel, a 29-year-old marketing director for a Madison, Wis., nonprofit, became an MDA Summer Camp counselor by chance. When he was a senior in high school, he saw a flyer about Summer Camp in his guidance counselor’s office, and it caught his interest. His first day of camp coincided with his high school grad- uation, so after walking off the stage with his diploma, he jumped into his parents’ car and headed to camp. That summer opened his eyes. “When I had a chance to do things with the campers, I saw that they’re just like anybody else: They want to have fun, do projects, play games and crack jokes,” says Salzwedel. “I saw the impact [camp] had on these kids, but I don’t think they realized the impact it had on me.” He volunteered again after his freshman year at the University of Wisconsin–Oshkosh, but in 2008, after his sophomore year, he An Oshkosh MDA Bowl-A-Thon team shows their team spirit. wasn’t able to attend because of work. “But I knew I could make a difference,” he says. “I love bowling, and I thought, ‘I could do a Now, the event includes a pre-celebration at a local bar the night bowl-a-thon.’” before, a raffle during the event that raises more money for MDA, and That year, he planned and hosted the first annual Oshkosh multiple sponsorships. Local MDA families also join in on the fun, and MDA Bowl-A-Thon. Salzwedel gathered his friends and fellow stu- Salzwedel hosts a dinner for them after the event. Now that he lives dents and filled about 10 lanes with bowlers, raising $938 90 miles north of Oshkosh in Madison, planning the event isn’t easy, for MDA. Since then, the Bowl-A-Thon has exploded, more but his passion for MDA and fundraising keeps it going. than doubling its fundraising in the second year and reaching “I try to drive up once a month to meet with our planning com- about $22,000 in 2017. Salzwedel estimates that they’ve had mittee to make the Bowl-A-Thon as successful as it can be,” says close to 200 bowlers each of the last few years, making it Salzwedel. “It’s something I love, and to know that after 10 years the largest bowl-a-thon in Wisconsin. And, in total, the Bowl- we’ve raised more than $100,000, with literally blood, sweat and A-Thon has raised more than $117,000 for MDA research and tears going into it, it’s a great feeling.” support programs. “When I started this, being involved at UW-Oshkosh, I had lots From hosting a bowl-a-thon to planning a bake sale, you of friends who helped spread the word to get their groups to can fundraise your way to help kids and adults living with come out and bowl,” he says. “It has grown tremendously since muscular dystrophy. We’ll give you the tools to make the fundrais- then. We have people come from different states, and for some, er a success and cheer you on every step of the way. Learn more it’s almost like an alumni event.” at mda.org/yourway. Pushing the Limit MDA Team Momentum runner pushes his son across the finish line at the Marine Corps Marathon

After running three marathons with MDA Team Momentum since 2014, Will Farr was ready for a bigger challenge. Farr had previously pushed his 14-year-old son, Owen, who has Duchenne muscular dystrophy (DMD), in a racing chair for a 4-mile race as part of a charitable initiative of the men’s workout group F3 Nation. In a video made to promote the initiative, Owen was Will Farr and his running buddy, Owen asked if he thought his dad would push him in a marathon. >

Quest 42 WINTER 2018

ACCESS MDA NEWS AND UPDATES FROM THE MDA COMMUNITY

Of course, Owen’s answer was “Yes,” and Farr decided to there with Owen, waving to people we knew. It was really a good time prove Owen right. In October, at the 2017 Marine Corps Mara- for us to be together.” thon in Washington, D.C., Farr pushed Owen for the entire While pushing Owen through the marathon was tough work, 26.2-mile race. Farr says seeing the big crowds cheering for him and his son kept “It was really him going. THE RACE IS ON exciting,” Farr says. “It was fun. I liked seeing the people cheering for me,” says Owen. Register today at mdateam.org for one “For one, there Beyond taking in the enormous amount of crowd support, Farr of these upcoming races: were a whole lot also had a lot of support from his friends and family, who donated • NYRR United Airlines NYC Half, of other people to his run. In this race, he raised more than $5,300 for MDA Team New York, March 18, 2018 pushing chairs, and Momentum. Combined with his previous races, this brought his • R eebok Ragnar So Cal, Huntington it was fun to be total to more than $26,000 raised to support MDA’s mission. Beach, Calif., April 6–7, 2018 around them on • C hicago Spring Half Marathon/10K, May 20, 2018 the race course. With MDA Team Momentum, the miles you run can raise • Bo ston’s Run to Remember, We kind of stood awareness of MDA and raise funds to further research May 27, 2018 out and you get breakthroughs and provide health care and everyday support • Bank of America Chicago Marathon, a lot of crowd for kids and adults in your hometown. Registrations are now live October 7, 2018 support. But also, for 2018 events, and a limited number of entries are available. it was fun being Visit mdateam.org to register.

the sixth grade. She started and dietetics, and she plans to Rene Runions attending MDA Summer Camp become a doctor. in her home state of Illinois and “In high school, I started want- later was named the Illinois ing to be a pediatric neurologist, State Ambassador. because I know from experience “It was cool,” she says. “I that there aren’t that many,” says went around Illinois and spoke Runions. “That was a motivator, at different conventions. I and in my senior year [of high talked with fire fighters, I went school] I took human anatomy, to Muscle Walks, and I went to and neurology was the most businesses like Jiffy Lube and fascinating part of that.” Lowe’s and thanked people [for Runions still makes it back their support].” home for her local Muscle Walk MDA Muscle Walk is also of Springfield, which she enjoys an important event for Runions because it gives her a chance and her family. She estimates to reunite with friends she that about a third of the family made at MDA Summer Camp. on her mother’s side has mus- “It’s always great to go to the cular dystrophy, including her MDA walks, because I get to mother, grandmother and likely see everybody from camp,” she her brother. Since her diag- says. “A lot of campers feel like nosis, the family has walked they’re at home when they’re at as Team Run Rene at the MDA Summer Camp — we could just Walking Strong Muscle Walk of Springfield. In be kids, and if you wanted to A family connects through MDA Muscle Walk those nine years, they’ve only do something, you could. That’s missed one walk, and they what I remember most.” have raised more than $10,000 For Rene Runions, a 19-year- for MDA families. MDA Muscle Walks old sophomore at Saint Louis Runions also attended the are happening across University (SLU), MDA has MDA Muscle Walk of St. Louis the country throughout the been a part of her life since she last year with a classmate who year. To find one near you was diagnosed with Charcot- has muscular dystrophy. At and get involved, visit Marie-Tooth disease (CMT) in SLU, she is studying nutrition mdamusclewalk.org.

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literally no limits,” Williams says. “That’s why I went into biomedical engineering. We always say ‘Camp is the best week of the whole year,’ and I want to make it like that for us all of the time.” Williams studied biological engineering at Louisiana State University (LSU) for her undergraduate degree, where she was first introduced to the ways her work could help people with disabilities. As part of her first class in the subject at LSU, Williams and her classmates met with local representatives from area schools and designed accessible playgrounds. After the class ended, Wil- liams’ professor hired her to work on the same project and get the playgrounds built. “We took the comprehensive designs from the classes, and we Allie Williams (middle, in purple shirt) helped to build this inclusive playground. wrote grant proposals so we could build the playgrounds,” says Williams. “That was where community engineering came in, making sure it’s an inclusive environment. That’s really my dream, working Designing Her Dreams on design, whether it’s a medical device or an inclusive or univer- Former MDA Summer Camper designs sally designed playground, that will improve the quality of life for accessible spaces and devices those living with neuromuscular diseases.” Williams hopes to start a nonprofit organization to design and Allie Williams, a 25-year-old who lives with Charcot-Marie-Tooth build inclusive playgrounds someday. But for right now, she is (CMT) disease, earned her master’s degree in biomedical engi- focusing on her job as a research and development engineer at neering from Texas A&M University in 2017. Williams always knew Exothermix in College Station, Texas. In this role, she uses tech- she wanted to help individuals with disabilities, but it wasn’t until nology to solve problems such as reducing contamination of stem her junior year of high school that she found the right fit. cells used for stem cell therapy. When she’s not working or visiting “At first, I didn’t even know biomedical engineering was a thing,” her hometown of Baton Rouge, La., Williams likes to spend time she says. “I really liked science and math, and I thought about enjoying the natural beauty of Texas. being a doctor, but I realized quickly that I don’t like blood or “I got a dog when I moved here, so we go to the dog park every anything like that. I was looking for how I could help people with day,” she says. “And we go on walks. There are a lot of nature trails disabilities, and I came across biomedical engineering.” and things like that here, so we like to hang outside.” Her first inspiration to help people with disabilities through engineering came from her experience at MDA Summer Camp. Visit mda.org/young-adults to explore MDA’s young adult “I started going to camp when I was 8, so seeing myself and all resources, covering everything from education and employ- the other kids getting to do what they wanted to do — there were ment to independent living.

Productive Partnership Acosta Sales & Marketing offices find unique ways to support MDA families

Since first partnering with MDA volunteering at MDA Summer in 1985, Acosta, a full-service Camps. Here are just some of sales and marketing company the ways Acosta offices across focused on packaged consumer the country have showed their goods, has raised more than support for MDA: $82 million for MDA’s mission. Acosta’s staff support MDA Golfing and giving through fundraising events, Every year, Acosta’s Marlbor- Marlborough, Mass., Acosta employees with former MDA State Ambassador Emma marketing promotions and even ough, Mass., office hosts a golf Russell (center) continues on page 48 Quest 46 WINTER 2018 Serving the Community Since 1979 Products Answers Fun Abilities Expo Checks All the Boxes: Latest products and services Access to community experts Informative workshops Tools for seniors Adaptive sports FREE ADMISSION Inclusive dance Assistance animals Fun activities for kids of all ages

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MDA, with more than bringing fun activities, including “We’re a smaller office, but $150,000 raised at the a dunk tank. we have a big heart,” says 2017 event. “The dunk tank was an Kristen Albrecht, branch “MDA is a part of our absolute hit,” says Ryan Tesdall, manager. “[These events] heritage,” says John director of the Eden Prairie started because MDA was an Bierfeldt, senior vice office. “I got dunked quite a important part of our corpo- president for Acosta’s few times.” rate culture, but the more we East Region. “The In addition, Acosta’s Eden got involved with our local folks in our company Prairie office raises money MDA office and got to know who have grown up for MDA through a corporate the people, we found it was at Acosta know how shopper program with their a really fulfilling thing to be important MDA is to us, partner SuperValu. Since 2014, involved in.” and I feel really good this program has raised more The Salt Lake City office has about the work our than $850,000, including their raised about $2,000 a year with team has done.” largest-ever yearly donation of these events. In addition to the Eden Prairie, Minn., Acosta employees at $300,000 in 2017. monetary donations, employ- MDA Summer Camp Catering for camp ees from the office volunteer at tournament at The International Over the years, employees at Putting the ‘fun’ in fundraiser MDA Summer Camp. Golf Resort in Bolton, Mass. The Acosta’s Eden Prairie, Minn., At Acosta’s Salt Lake City office, event brings together Acosta office have volunteered at their employees get together multiple To learn how you can client partners and retailers for local MDA Summer Camp. For times a year for fun, seasonal support Acosta and all a day of golf and dining, ending the past two years, the office has fundraising events that support MDA partners, connect with with a silent auction. Over the gone a step further by spon- MDA. From Mardi Gras parties your local office or visit last 17 years, the tournament has soring a lunch for the campers to Easter egg hunts, the office mda.org/get-involved/meet- raised more than $2.5 million for and volunteers, in addition to is in the giving spirit year-round. our-partners.

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BY CHRIS ANSELMO

around and learn to focus on the open doors, rather than the ones that closed uncere- moniously in my face. Acceptance has not come easily. At age 21, I was asymptomatic, a young adult living in Boston and enjoying life. Once the symptoms began — fatigue here, a muscle spasm there, followed by unexplained weakness — my life quickly unraveled. Depression took hold of me for several years. I was jealous of those around me, angry that my life was descending into a series of endless falls. Then, in 2013, I was jolted Chris Anselmo (seated) n recent months, I’ve prepared for, and I remind back to reality when my at the 4th annual Strength, Science and experienced a noticeable myself often that a wheelchair co-worker and close friend Stories of Inspiration decline in my arm and leg will give me more freedom Carly passed away from event in Cambridge, I Mass., which he helped strength. My limbs feel heavy. than I have now. cancer. In June 2012, we were to organize. It seems like they succumb a However, I’ll be honest: working together on a proj- little bit more to gravity each I’ve been frustrated a lot ect, and by February she was day. One night, I tried to roll lately. I may be mentally gone. The way she handled over in bed, and it took me six prepared for what the future such a horrific diagnosis with attempts — six! — to succeed. holds, but it doesn’t make liv- grace and dignity (she was By the time I finally flipped ing it any easier. The soreness, only 24 — it still boggles my over, I felt like I had just gone pain and weakness grind me mind), is the most amazing to the gym. down constantly. Some days I thing I have ever seen. I know that progressive want to pout. I want to throw Her passing made me weakness comes with the things. I want to yell at the re-examine how I was han- territory of my disease, a top of my lungs. dling my own circumstances. type of distal myopathy called It is in these moments I realized my life could not Miyoshi myopathy. In the 10 of exasperation that I am continue down the path I years since I began experienc- reminded of the role models was going. Something had to ing symptoms, I’ve adjusted who have helped me through change. to leg braces, crutches and a tough times before, whose Although 2013 was a scooter, and I will eventually examples when facing adver- difficult year, it was a turning need to use a wheelchair. It’s sity gave me the strength and point. To this day, I consider something I’ve accepted and motivation to turn my life Carly to be an angel, sent at

Quest 50 WINTER 2018 a specific moment to redirect “ Role models are everyday people doing the course of my life. I think everyday things. They don’t possess Find Stories that of her every day, and she Inspire Hope continues to bring me great traits of a select few; they are just like Read stories from around strength in difficult moments. you and me.” the MDA community — from Since then, I have found personal perspectives to myself seeking out role mod- — Chris Anselmo research news — on MDA’s els in my day-to-day life, in Strongly blog, at strongly. articles and in books. Many When I am down, they Role models are everyday mda.org. If you’re interested times, I stumble upon their pick me up. On days when people doing everyday things. in sharing your story on stories by accident. In this I feel like I have no strength, They don’t possess traits Strongly, contact us at way, I have gained several role they move my arms and legs. of a select few; they are just [email protected]. models who encourage me on They are inspiring, but not in like you and me. They are down days. Some are my good the condescending way that relatable, and within their friends. Many are strangers I the term often gets thrown stories are lessons that hope to meet someday, if only around. They didn’t do any- anyone can benefit from. to say thank you. Others I’ll thing “brave” or “heroic” or Within the MDA community never get the chance to meet, “unexpected” for someone in there are so many whose since they have already passed their situation. They merely stories have helped me in away. Each person encoun- lived life to the best of their meaningful ways — Chris- tered adversity of some sort, abilities. Disability and adver- topher Rush, Pete Frates, but they did not let whatever sity was not their whole life, Mattie Stepanek — the list roadblocks they encountered just a small part of it. Carly, could go on indefinitely. derail them from maximizing for example, was so much Today, I have reached every day. more than cancer. an equilibrium in my life where, although I may not be thriving as well as I’d like, HOW TO BE A ROLE MODEL: I’m able to endure. I’m able to SHARE YOUR STORY persevere. I’m able to achieve Here’s another lesson I’ve learned: We all have the my dreams and goals. I’m able capacity to be role models for others. If you have expe- to accept my circumstances, rienced adversity in your life, you can be a role model. while never giving up hope It doesn’t require a special skillset and you don’t have for better days ahead. to live a perfect life to make a difference. I would be nowhere with- I know what you’re thinking: “I live the most boring out my family and friends. life ever!” or maybe, “I’m not doing anything that any- But I owe a special debt of one else isn’t doing.” Well, guess what, you can still be gratitude to those ordinary, a role model. everyday heroes whose exam- We have all lived an experience that someone else ples I have been able to draw is just starting to go through. We’ve overcome — or from — who gave me reason are still dealing with — challenges that someone else to believe in myself again. Q is coming to grips with. Sharing your journey can be daunting. But I guaran- Chris Anselmo, 31, lives in tee you, if you tell your story authentically, sharing the Connecticut with an adult-onset good and the bad, the ups and the downs of what you form of neuromuscular disease. are going through or struggling with, you will make a Read more about the role models world of difference for someone. who have influenced him on his A well-timed story — your story — may very well blog sidewalksandstairwells. change the trajectory of someone’s life. com. Anselmo also is a Quest and Strongly blog contributor.

Quest MDA.ORG/QUEST 51 LASTING IMPRESSION Enter Stage Right A high school play sets the stage for a career in the arts

Make It Meaningful Find your passion, and get involved in the MDA community in a way that’s meaningful for you. Learn more at at mda.org/get-involved. Matt Plummer (seated) and his wife, Bethany (left), enjoy a family gathering.

att Plummer, a 30-year-old graphic, web and me was finding a way out of my comfort zone,” he says. “That thatrical designer in Fort Worth, Texas, will never led to things professionally, and personally it made me a hap- Mforget the role that intro- pier and better person.” duced him to the world of theater and After high school, Plummer studied art during his sophomore year of high theater in college and earned a Master school: Townsperson No. 3 in Arthur of Fine Arts in design from Texas Miller’s The Crucible. Tech University. During his studies, “I think a lot of people in my sit- he used his talents to design promo- uation have a hard time expressing tional materials and sets for stage themselves,” says Plummer, who lives productions. Currently, he works at with spinal muscular atrophy (SMA). Odessa College as a graphic and web “That experience really gave me a cre- design specialist. ative, artistic outlet to express myself Recently, the Odessa Arts organi- and everything about me.” zation selected Plummer for a project Plummer credits his high school to beautify the city’s traffic boxes. He theater experience with helping him designed a series of artistic coverings find a passion that he turned into a Above and top right: Traffic boxes designed by Plummer in that promote literacy, reflecting the career. “The most important thing for Odessa, Texas. city’s One Book Odessa program. Q

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