Celebrating National Volunteer Week at the TMA!

This week marks National Volunteer Week, and we at the Transverse Myelitis Association are excited to celebrate! Daily, we are humbled by the support and dedication shown by our volunteers. Only through their efforts can the TMA do the work needed to be done to advocate for people diagnosed with rare neuro-immune disorders.

Our volunteers span across state and national lines: from California to Massachusetts, from England to India. They work tirelessly to hold support group meetings and offer a helping hand to those in their communities who need support. Our volunteers also organize Walk-Run-N-Rolls and other fundraising and awareness events, so that the TMA can grow and spread our mission of education, research, and advocacy. We also have volunteers who have shared their stories with our community so that no one feels alone in their diagnosis. Our volunteers help us spread our message both through social media and word of mouth. Volunteers give their time and energy to ensuring a better future for individuals and their families who are affected by these disorders. We are so incredibly grateful to them for all that they do!

If you are interested in becoming a part of the amazing team of TMA volunteers, there are many ways you can help. It may be as simple as writing a post for our Blog or sharing your story as a Hope Ambassador. It may be signing up for a community role as a Support Group leader, or a fundraising role as a Walk-Run-N-Roll organizer. Maybe you have your own ideas about how you would like to volunteer for the TMA, and we would love to hear them. We encourage you to get involved in spreading the mission of the TMA!

To learn how to become a TMA volunteer, please email our Community Partnerships Manager Jeremy Bennett at jbennett@myelitis.org.

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Urgent Need for AFM Funding: How You Can Help

By GG deFiebre and Rachel Scott
GG deFiebre is the Associate Director of Research and Education of the Transverse Myelitis Association and Rachel Scott is a member of the Board of Directors of the Acute Flaccid Myelitis Association

Many in our community and around the country have become aware of the term “acute flaccid myelitis” or AFM because of recent news reports about the condition. AFM is an inflammatory disease of the spinal cord characterized by acute onset flaccid paralysis that predominantly affects healthy children and young adults. AFM is similar to the epidemics of poliomyelitis that struck the country in the 20th century, as many children with AFM are left with long-term paralysis, gait disturbance, and significant disability. In 2014, the Centers for Disease Control and Prevention (CDC) in the United States reported a rise in the number of AFM cases. After the 2014 clusters of cases of AFM came to light, the TMA and our Medical and Scientific Council added the newly coined AFM to the group of rare neuro-immune disorders covered by the organization. At that time, we did not know or understand enough about AFM, but we began to create educational materials specifically about AFM, and support and research opportunities for AFM. AFM, like many of the disorders the TMA focuses on, is a paralyzing syndrome that causes damage to the spinal cord and leads to weakness and paralysis in one or more limbs.

Unfortunately, the number of cases of AFM have been increasing, with spikes of cases occurring in the summer and fall every other year. The magnitude of the public health problem generated by AFM in the USA is reflected by the amount of resources needed for diagnosis, care and rehabilitation of children affected by the disease. During the outbreaks in 2018, nearly 50% of the patients required medical management in intensive care units and many of the children required prolonged periods of hospitalization and rehabilitation. Most of the children were left with significant neurological disability including limb paralysis and, in some cases, complete lack of mobility, and some have died.

Due to advocacy efforts of families affected by AFM, the Acute Flaccid Myelitis Association (AFMA), and the medical professionals treating those with AFM, the disorder has gotten the attention of the federal government. For example, last year Senator Kirsten Gillibrand called for $1 billion in funding for AFM research.

An AFM Working Group composed of scientists and clinicians from across North America has been working together with the TMA to publish recommendations for treatment of patients with AFM based on their experiences. The group spans approximately twenty-five institutions and contains over sixty members. Many of the participating institutions have developed research protocols for studying AFM, however, all of these studies lack funding from the NIH. We have a critical opportunity now to advocate for national funding of AFM prevention and treatment.

Why is this opportunity important for everyone in our community, even for those who do not have AFM? As we learn about one of these disorders, it will inform our understanding of all the other disorders. As we develop more effective therapies and treatments, all these disorders will benefit. So, while you may not personally be affected by AFM, those with AFM are part of our community of rare neuro-immune disorders, and we need to stand together when we can. We are stronger together than we are apart. This is a critical time to help those diagnosed with AFM, those who are not yet diagnosed, and our entire community. We hope you will take the time to fill out this form to send a letter advocating for federal funding of AFM to your legislators in Washington. It only takes a few seconds. All you need to do is fill out your address and the form will automatically find your representatives. You can even customize the letter to talk about why you are personally invested in this cause. If you have some time, please also call House Appropriations Committee Members and House Health Committee Members.

Thank you for supporting one another at this critical time.

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Announcing The Sumaira Foundation for NMO’s 4th Annual Awareness Gala

Hi TMA Friends!

I proudly serve on the executive board of The Sumaira Foundation for NMO, a special nonprofit founded by my childhood friend after she was diagnosed with neuromyelitis optica (NMO) in the summer of 2014. NMO is an extremely rare autoimmune disease that causes inflammation in different locations in the central nervous system. It affects people of all demographics and, with such little awareness around the disease itself, is often misdiagnosed or missed entirely. Frustrated by this global illiteracy, my beautiful friend Sumaira did what so many people could not: she leveraged her own community, knowledge and influence to build a mighty organization to provide real support for the patients, caregivers and loved ones who battle NMO each and every day. It’s been both a humbling and inspiring journey to see firsthand how our small efforts generate hope amidst the emotional rollercoaster that comes alongside any rare disease.

It’s for these reasons, and many more, that I’m thrilled to invite all of you to our 4th annual NMO Awareness Gala. On March 23rd, we’ll gather 250 guests from around the country for a black-tie evening at the Mandarin Oriental Boston. We love to bring together kind folks with a unique theme, and this year we’ll host our 2019 guests in a magical enchanted forest!

100% of the funds raised will empower us at The Sumaira Foundation to give a voice to those that don’t have one [TSF Voices of NMO], support innovative projects that help find a cure [TSF Spark Grants], and create a community of much-needed support for those affected by NMO [TSF Events + Partnerships].

Shout out to our official Gala 2019 Sponsors: Mass Eye and Ear Infirmary, Boston Laser Boston Eye Group, Barre Groove, Glacial Multimedia and the TMA for helping us create a memorable evening featuring live music, delicious eats, raffle & auction prizes, and of course lots of love for a cause that we can all get behind.

We’d love for you to join us! Here’s a few easy ways you can support our mission-aligned efforts this year:

  • Looking to attend Gala 2019 in person? View all ticket options here including an ultimate double-date experience!
  • Are you an NMO patient or a student, fellow, or resident? Email us to inquire about complimentary or reduced tickets at events@sumairafoundation.org.
  • Interested in leveraging your corporate leadership for social good? Ask us about Gala 2019 sponsorship opportunities at events@sumairafoundation.org.
  • Can’t make it to Gala 2019 & still want to show your support? Donate to The Sumaira Foundation here.

Cheers to helping us illuminate the darkness of NMO & all rare diseases,

Melissa Herman

Chief Strategy Officer, The Sumaira Foundation
Website | Email | LinkedIn

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Will you be our #carentine?

On a day like today, we want to remind you that love isn’t just about romance. Love is also found through community, friendship, and family. It’s empathy. It’s understanding. It’s warmth. It’s support. It’s care. And caring. Caring for one another.

This Valentine’s Day —or #carentine, as we call it—, make a gesture of love like no other: show that you care by helping us cross the finish line of our #whocares campaign to bring hope and help to people affected by rare neuro-immune disorders. And thanks to a generous donor, the love you give will be doubled.

We are only 7% ($15,627) away from our $250,000 goal, please help us make it a reality!

You can help us in the following ways:

1. Donate to the TMA’s #carentine Facebook Fundraiser
2. Create your own #carentine Fundraiser on Facebook
3. or, donate directly through PayPal.

We appreciate any help you can give us, whether you donate $5 or $500. Every bit helps. Help us get to the finish line!

Tomorrow needs you.
2019 needs you.

Will you be our #carentine?

— The TMA

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Happy Holidays!

On behalf of the board of directors, members of the medical council, staff and volunteers here at the TMA, we wish you and your family much health and happiness as you celebrate these holidays.

Thank you for being part of the TMA community!
The Transverse Myelitis Association

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Thank you for your support!

Wow! We needed a day to recover from the amount of love and generosity we received during this year’s #GivingTuesday. We are truly humbled and beyond grateful. To our incredible community and supporters: thank you. In only one day we have collectively raised over $30,000! And with the matching, the total comes up to over $80,000 that will go towards supporting our newest research initiatives.

Thanks again for celebrating generosity with us and being a part of this incredible global giving movement. #GivingTuesday is a perfect picture of the world we believe in, because of individuals like you.

If you missed Giving Tuesday, do not despair! There are opportunities to give throughout the year:

  • Join our #whocares campaign. Donations may not be quadrupled, but they will be matched, dollar for dollar!
  • Get a pair (or more, remember the Holiday Season is around the corner 😉) of #caresocks 🧦, the warmest, coolest, and most caring socks in town.
  • Become a sustaining supporter. Even $5 dollars a month can make a big difference!
  • This Holiday Season, make your Amazon purchases through AmazonSmile and donate 0.5% of your purchase to the TMA.
  • Donate directly through our website (or PayPal for our international supporters).

By #caring, you are helping to make these disorders visible and are making a difference in the lives of all those affected. If we all #care, we get one step closer to finding a cure.

Let’s fund research. Let’s end rare neuro-immune disorders. Together.

The Transverse Myelitis Association

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Thank you!

Dear TMA Family,

In this season of thankfulness, we are grateful for the dedication, commitment and perseverance from our community of advocates, physicians, researchers, friends, families and all those diagnosed with a rare neuro-immune disorder. Thank you for supporting our cause and making 2018 such an incredible year.

In this light, we wanted to remind you that November 27th is #GivingTuesday, and on this day we want to raise $10,000 to help us kick off our #whocares matching campaign. This year we’re raising money to bring hope and help to more people in 2019. You can help The Transverse Myelitis Association by becoming a Facebook fundraiser or donating to the campaign. AND, our staff and officers have agreed to give $1 for every $1 we raise, for up to $10,000 on #GivingTuesday.

You can help The Transverse Myelitis Association in the following ways:

  1. Create a Fundraiser on Facebook or donate to our Giving Tuesday Facebook Fundraiser
  2. Donate directly through our website,
  3. Become a sustaining supporter of the TMA
  4. or through PayPal for our international supporters.

In addition, a generous donor has decided to match every dollar raised, which means that if you give on #GivingTuesday, your donation will be QUADRUPLED!

The funds you give or raise will make it possible for The Transverse Myelitis Association to connect thousands of people to the help they need and deserve and fund critical research.

Happy Thanksgiving 🦃


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October Updates from the TMA

October was a busy month for the TMA staff and volunteers! Please continue reading for information about what we’ve been up to last month.

2018 MA Walk-Run-N-Roll

MD Support Group Meeting

2018 NORD Rare Summit

2018 RNDS

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Dr. Ram Narayan to Open a Spinal Cord Disorders Clinic at the Barrow Neurological Institute

Dr. Ram Narayan is a neuroimmunologist and a member of the TMA’s Medical Professional Network. Dr. Narayan is currently in the process of setting up a multidisciplinary spinal cord disorders clinic at the Barrow Neurological Institute, where he plans to treat patients with transverse myelitis, neuromyelitis optica spectrum disorder, and other rare neuro-immune disorders. To learn more about Dr. Narayan, read his bio below.

Ram Narayan, MD, is a Neuroimmunologist and an assistant professor of neurology in the Department of Neurology at Barrow Neurological Institute in Phoenix, AZ. He practices at the Barrow Neurological Institute and at the Phoenix Children’s Hospital. He is board-certified in neurology by the American Board of Psychiatry and Neurology. He is also certified in the evaluation and management of neuroimmunological disorders (CRND).

Dr. Narayan’s expertise includes the diagnosis and treatment of multiple sclerosis, neuromyelitis optica spectrum disorders, neurosarcoidosis, transverse myelitis, autoimmune encephalitis, and other immune-mediated and infectious disorders of the nervous system. He is a member of the American Academy of Neurology, the National Multiple Sclerosis Society, and the Transverse Myelitis Association.

Dr. Narayan earned his medical degree from the PSG Institute of Medical Sciences and Research in Tamil Nadu, India. He completed his neurology residency at the University of Texas Southwestern Medical Center. He also completed a combined fellowship in adult and pediatric neuroimmunology at the University of Texas Southwestern Medical Center and the Johns Hopkins University School of Medicine.

Dr. Narayan received dedicated training in the evaluation and management of spinal cord disorders under Dr. Benjamin Greenberg at the UT Southwestern Medical Center and Dr. Carlos Pardo and Dr. Michael Levy at the Johns Hopkins School of Medicine.

Dr. Narayan’s research interests are in exploring carcinogenesis in multiple sclerosis with the use of immunosuppressants and is assessing driving safety in patients with multiple sclerosis.

To request an appointment with Dr. Narayan, please call (602) 406-6262.

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Introducing Denise Maddox

By Denise Maddox, RN Care Coordinator at Children’s Health CONQUER Clinic in Dallas, TX

I graduated from the nursing program at Oklahoma State University in 2012.  This is a second career for me, and while I was excited to begin my new journey, I had no idea where to start.  There are so many specialties to choose from.  The one thing I knew for sure is that pediatrics had my heart. The children are amazing and being a mom myself, I felt a deep connection with the parents and the questions they had as they searched for answers for their sick child.  My experience up until now has been in the NICU, neurosurgery, and neurology. While each of these has taught me a great deal, nothing has been more exciting or more fulfilling than working with the neuroimmunology team at our Children’s Health CONQUER Clinic. I have seen so many young people, toddlers to young adults, meet their challenges head-on with a smile and a determination that is awe-inspiring. And the parents are engaged and eager to do anything and everything they can to give their child every opportunity to heal or, in some cases, live passionately and fully with their new normal. Many of these moms and dads can spout off tests and talk about MRIs like pros because they have learned that many times, they are the ones educating other medical professionals on these rare diseases. They have certainly taught me!

And our CONQUER team (Collaboration on Neuroimmunology: Question, Understand, Educate, Restore) is the best!  They have taken me in and welcomed me as one of the family.  Each time I ask another question (and there are many), there is not one of them that will not stop and explain.

My official title is RN Care Coordinator. When we are in clinic, I direct the “human” traffic!  There are potentially 8-10 people that could see each patient. That takes coordination and sometimes a gentle, but firm, nudge to get moving. I also talk with our teens, along with our social worker, about transitioning to adulthood. We want them to be comfortable so that when their friends or other medical professionals ask what’s going on, these teens can confidently tell them about their diagnosis. It’s also important for them to understand what their medication is, why they are taking it and when to call for help. I do the same education for moms and dads of our younger kiddos. When I am not in clinic I take patient calls, deal (sometimes fight) with insurance, coordinate labs and imaging, write letters of medical necessity and diagnosis letters, and work with the specialty drug companies to make sure medications are getting where they need to go.  I encourage patients to call me for anything.  If I don’t know the answer, it’s likely I can figure out who does.

I am incredibly grateful for this opportunity! I have learned a great deal in 5 months and there is so much more to know! I am excited for all that is yet to come!

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