2018 MA Walk-Run-N-Roll
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
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:
- Create a Fundraiser on Facebook or donate to our Giving Tuesday Facebook Fundraiser
- Donate directly through our website,
- Become a sustaining supporter of the TMA
- 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 🦃
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.
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!
When I suddenly became paralyzed in 2009, I was lucky enough to be diagnosed within a few hours of my onset of paralysis. My doctors knew what transverse myelitis was, they knew how to treat it, and I received IV steroids that night. My family found the TMA’s website and connected with the TM center of excellence at Johns Hopkins, which helped me get the best care possible. None of this would’ve been possible without the tireless efforts of Pauline and Sandy Siegel. When Pauline was diagnosed with transverse myelitis in 1994 there were no centers of excellence and no network of physicians focused on these disorders. I am so grateful that they saw a need and committed to ensuring that no one else facing this diagnosis would face it alone. I do not know how different my life would’ve been without them. They were fighting for me before I even knew this would be my fight. I am so grateful, and I know I am not the only one.
Tragically, Pauline passed away last year, on August 15th. We at the TMA, our community, and her family and friends remember her dearly. We remember her strength, her honesty, her compassion, and her commitment to our community. Despite the difficulties she faced, Pauline always managed to see and feel the blessings of her experience, and never lost hope for a better tomorrow. Pauline lived her life trying to improve the future of other people with rare neuro-immune disorders. Today, and every day, we honor and remember her.
Gabrielle deFiebre, Associate Director, Research and Education
Dr. Charles Levy, a member of the medical and scientific council of the TMA, received The Ohio State University College of Medicine Alumni Achievement Award on Monday, August 6th. This award “is presented to College of Medicine or resident alumni in acknowledgement of distinguished career achievements, both in contributions to the practice of medicine and to society as a whole.”
Sandy Siegel, the TMA’s President, attended the ceremony to honor Dr. Levy.
“Dr. Charles Levy was the first physician on the TMA Medical Advisory Board. He established the Board. He was one of Pauline’s physicians when she was at Dodd Hall, the rehabilitation hospital at The Ohio State University. When Dr. Levy found out that we were establishing the TMA, he offered to initiate the Medical Advisory Board. He also recruited Dr. Joanne Lynn to our Board. She was the first neurologist and, at the time, was a co-director of the MS Center at Ohio State.
In 1997, Dr. Levy held an education meeting for a very rare disease community. The National Organization for Rare Disorders was involved in the meeting, as well. He invited the TMA to attend. All of the officers (except for Jim Lubin) and some of the people from our community attended. It was our experience at this meeting that inspired the TMA symposia. Dr. Levy demonstrated the power of bringing a rare disease community together, offering an education program, and creating opportunities for patients to share their experiences with researchers and clinicians. It was also the first time that Pauline and I met all of the other officers of the Association. Dr. Levy attended and presented at our first TMA symposium in Seattle in 1999.
I was honored to have been invited to the award ceremony for Chuck. He graciously introduced me during his acceptance speech and recognized The Transverse Myelitis Association. Chuck has been our advocate for a long time, and he has been a very good friend to Pauline and me.”
More about Dr. Charles Levy:
Dr. Charles Levy’s career is marked by dedication to innovation in rehabilitation. At the North Florida/South Georgia Veterans Health System, Dr. Levy is the chief of the Physical Medicine and Rehabilitation Service, associate director of the VA Center of Innovation on Disability and Rehabilitation Research, and the director of the Rural Veterans TeleRehabilitation Initiative (RVTRI). He also contributes his expertise in telehealth to the Creative Forces: NEA Military Healing Arts Network, a National Endowment for the Arts (NEA) collaborative that serves active duty service members and veterans who have been diagnosed with traumatic brain injury and psychological health conditions. The RVTRI and NEA projects use telehealth to deliver traditional rehabilitation – as well as arts, dance/movement and music – therapies directly to the home via live streaming video. Dr. Levy is also an adjunct associate professor in the Department of Occupational Therapy at the University of Florida and a research scholar at the Center for Arts in Medicine, where he conducts research on the use of virtual reality to help veterans with impairments in cognition and emotional control. In 2015, Dr. Levy received the Paul B. Magnuson Award for Outstanding Achievement in Rehabilitation Research, “the highest honor for VA rehabilitation investigators.”
The TMA has recently added a newly coined inflammatory condition called MOG antibody-associated disease (MOG-Ab disease) to the group of rare neuro-immune disorders advocated for by our organization. By welcoming those diagnosed with MOG-Ab disease into our organization, we hope to gain a deeper knowledge of rare neuro-immune disorders and advocate for better awareness within the medical community. The TMA worked with a committed group of volunteers on a new information sheet about MOG-Ab disease.
As part of our mission to provide resources for our community, the TMA has information sheets available on our website for each of the rare neuro-immune disorders. These information sheets include a brief but comprehensive overview of each disorder, including epidemiology, signs and symptoms, diagnosis, acute treatments, prognosis and management, and long-term care. Individuals, their family members and caregivers, and medical professionals can use these information sheets to learn about each disorder. For more detailed information about rare neuro-immune disorders and symptom management strategies, there are hundreds of additional resources which can be found in our Resource Library.
To learn more about MOG antibody-associated disease, please view the new information sheet or listen to our recent Ask the Expert Podcast, “What is MOG antibody-associated disease?”, featuring Dr. Benjamin Greenberg and Dr. Michael Levy.
In celebration of National Volunteer Week, we express gratitude to all our volunteers (past and present) for their efforts. Only through the time and talent donated by our volunteers is it possible for us to achieve our mission.
Whether organizing an awareness event or holding a support group, their contribution is priceless. If you’ve attended one of our Walk-Run-N-Roll events you might wonder how it all comes together. It’s through the determination of our volunteers and their friends and family, who make countless phone calls to local businesses for sponsorships and donations; set up tables, tents, and decorations (and then take them all down); and work with the park management to provide an accessible event for all attendees. Additionally, our support group leaders answer emails and phone calls from members all while dealing with a rare neuro-immune diagnosis themselves, or the diagnosis of a loved one.
Volunteers are the lifeblood of our organization. Not only do they help deliver our programs and services; they also serve as ambassadors for The TMA within the community. National Volunteer Week is an opportunity for all of us to recognize and thank our volunteers for the impact they have on our organization.
From all of us at the TMA, THANK YOU!