My First Rare Neuro-Immune Disorders Symposium

By Julie Barry

My name is Julie Barry. On September 13th, 2008, I was diagnosed with Transverse Myelitis. I remember the day I got home from the hospital. I went online and started to look up my rare condition. One of the first things I came across on the internet was The Transverse Myelitis Association. It explained everything in detail. It gave me names of people I could talk to about this condition. The very first person I talked to was Deborah Capen. She told me her story and convinced me to register with the TMA. I did. It wasn’t long after that Sandy Seigel called to let me know about a woman who would be calling me. She was starting a support group in Tucson, and that is when I met my dear friend Barbara Sattler. Barbara has been with me from the beginning of my journey. Barbara has always tried to get me to go to the TMA Family Camp and symposiums. I am not sure why it took me so long to listen to her.

This was the first year I went to the Rare Neuro-Immune Disorders Symposium. I was so surprised by the doctors. They were not arrogant like so many doctors I’ve encountered. Dr. Pardo, Dr. Greenberg, and Dr. Kerr were the doctors I’d heard so much about. I call them my dream team. They are trying to carry out my dream, which is to reverse the effects of Transverse Myelitis. I like that they didn’t mind me asking them questions, and they even answered them. I learned that my dream team of doctors is much bigger than I knew.

I learned so many things, like that there is Vascular Myelopathy, a stroke in the spinal cord, though my condition is an Inflammatory Myelopathy. I was surprised to find out that 50% of people with TM are misdiagnosed. I didn’t know that the spinal cord controls things like the skin, brain, and even your bladder. I also learned things like the myelin sheath around our nerves does not only insulate the nerves, it feeds them. I learned about both Vitamin D3 and B12 and how important they are for us. Also, I need some physical therapy (PT) for all the parts of my body that give me trouble, like my spastic muscles. I learned I need Cognitive Behavioral Therapy because I cannot get that old me out of my head. I need to go see a urologist. Oh and of course as Dr. Greenberg said PT, PT and more PT.

I met so many people just like me. People who were still going through the struggles I went through in the beginning. I met people who have had this condition far longer than I expected. One women was diagnosed in 1969.  I had no idea that it has been around that long.  I met people who were having struggles that I never had to deal with, like children who are angry because this disease happened to their parent. How hard that has to be. I am not a parent but I can only imagine that you would want to protect your child from anything that would harm them both physically and emotionally. How do you do that when it is you that is causing the hurt? I met many amazing people. I met two sisters, who I had read about; little did I know that we were meant to meet. We are neighbors. One sister lives so close to me. Coincidentally, we flew home on the same flight together and brainstormed on how to help raise awareness and money for my dream to reverse the effects and find a cure for this condition.

Last but not least, I met a woman who is struggling not only because of her life and how it turned out, but because her support system isn’t always there. She may not have realized how special she is. I watched as she held the hand of a little boy who seemed to be in awe of her, perhaps it was because she too was in a wheelchair just like him or maybe he felt the love she has for people. It was a very special thing for me to see.

So, as you can see there was so much I learned, not only medical education, but emotional education. I do have some regrets. I wish I had listened to my friend Barbara and gone sooner. I hope to get to the camp next! Thanks so much to all the Board members and Staff of the TMA who put on this event and for helping make it affordable for members. Thank you for all that you do for us.

Videos from the 2017 Rare Neuro-Immune Disorders Symposium will be available in our Resource Library and on our YouTube Channel.

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How to Experience the RNDS Through Social Media

The 2017 Rare Neuro-Immune Disorders Symposium (RNDS) is finally here! The RNDS takes place this week, Oct 20th and 21st, in Columbus, Ohio.

The TMA is excited to share this event with our community and hopes to provide a meaningful and beneficial experience to all who attend.

We are aware that many people in our community are unable to attend due to scheduling conflicts, financial reasons, health concerns, or simply being Michigan Wolverine fans unwilling to step foot in Columbus. For those who can’t attend in person, there are many ways to keep up with everything happening at the symposium.

  • For those unable to attend, all talks will be video-recorded and made available in the Symposium Videos section of our Resource Library following the conference.
  • Sign up for notifications of Live video on Facebook and/or other platforms in case any attendees share a live stream.
  • We are encouraging attendees to use #rnds2017 on social media when sharing their experiences. Be sure to search that hashtag and connect with those in attendance.
  • Post your own photos using #rnds2017. Just because you can’t join us doesn’t mean you should feel left out. Show us how you are spending your weekend!
  • Lastly, for Sunday’s Walk-Run-N-Roll event we will share photos using #ohwalk2017.

The goal is to bring together as many members of our community as possible. The RNDS is a great opportunity to do that, but with more than 12,000 members in 100 countries, it’s not possible for everyone to meet in person; however, the wonderful thing about social media is that we can all share stories, information, and encouragement no matter where we are located.

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Register Now for the 2017 Rare Neuro-Immune Disorders Symposium!

We are two weeks away from our 2017 Rare Neuro-Immune Disorders Symposium! This education and advocacy conference is for families, caregivers, and individuals diagnosed with ADEM, AFM, NMOSD, ON, and TM who want to learn about the latest research, diagnosis, and treatment of these disorders. The event presents a unique opportunity for community members to meet others and discuss shared experiences. The conference also allows participants to network with the leading medical experts in the field of rare neuro-immune disorders.

This year, the RNDS is being held in Columbus, Ohio on October 20th – 21st. We already have over 150 attendees registered, and would love to see you there as well! Included in the registration is two days packed with workshops and information sessions led by our medical experts and researchers. Participants also have the opportunity to participate in several research studies currently being conducted on rare neuro-immune disorders. Breakfast and lunch are provided both days, as well as a dinner reception on Friday night of the conference. Some topics that will be discussed include “Rehabilitation”, “Managing Fatigue in RNDs”, “Transition from Adolescents to young adults”, disorder-specific breakout sessions, and many more. To see the full list of topics and the agenda, please visit the RNDS event page.

Online registration for the RNDS closes Monday, October 9th, so make sure to register ASAP if you are planning to attend! On-site registration on the day of the event is available, but you will not be guaranteed a spot in your preferred workshop if space does not permit. Also, please be sure to indicate whether you will attend the Ohio Walk-Run-N-Roll, which is being held Sunday, October 22nd in Dublin, OH.

The TMA is excited to share the 2017 RNDS with our community and hopes to provide a meaningful and beneficial experience to all who attend. For those unable to attend, all talks will be video-recorded and made available in the Symposium Videos section of our Resource Library following the conference. If you have any questions about the 2017 RNDS or Ohio Walk-Run-N-Roll, please email info@myelitis.org. We hope to see you in Columbus soon!

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Raising Awareness

Tom Ponzo, a student at Connecticut School of Broadcasting in Tampa, Florida, recently created a public service announcement (PSA) about transverse myelitis, featuring his friend Kristin Smith. PSAs aim to bring awareness to issues, and Tom decided to create one about transverse myelitis.

Kristin, who is featured in the PSA, began losing sensation in both legs on December 20, 2012, and in a few hours, she was paralyzed from the chest down. Three months after Kristin lost the ability to walk, she was diagnosed with transverse myelitis. Still requiring the use of her wheelchair, she was determined not to give up her dreams. Kristin has since completed her Master’s and PhD in Atmospheric Science at the University of Maryland and now works at the National Aeronautics and Space Administration in Florida. You may recognize Kristin as one of our Myelife. My hope. Hope Ambassadors from last year. You can find her story here.

Kristin will also be a speaker for our September podcast, “How to get the most out of your appointments: Physician and patient perspectives with Dr. Greenberg and Kristin Smith.” Kristin and Dr. Greenberg will be discussing the medical appointment from each of their perspectives and give tips and suggestions for how to get the most out of an appointment. This podcast will be on September 25th between 1 and 2 pm ET. To learn more and to register, click here.

A big thank you Kristin and Tom for their willingness to spread awareness!

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Announcing the 2017 Rare Neuro-Immune Disorders Symposium

Being diagnosed with a rare disorder like transverse myelitis can be isolating. Most people who are diagnosed with ADEM, NMOSD, ON, or TM have never heard of these conditions before being diagnosed, and all too often the medical professionals treating them have only treated a few patients with the same disorder. This can make it hard to manage the symptoms of these disorders, and it can be especially difficult when you don’t have anyone around you who is experiencing similar issues.

Every other year the TMA hosts an international Rare Neuro-Immune Disorders Symposium (RNDS), an event in which individuals with ADEM, NMOSD, ON, and TM, their families, and the leading medical professionals and researchers come together to discuss the diagnosis, management of symptoms, and latest research on these disorders. It is a wonderful opportunity to learn about these disorders and interact with others dealing with similar symptoms and issues. We encourage anyone who can to attend the 2017 RNDS being held in Columbus, OH on October 20-21. Registration is now open!

Even if you can’t attend, all talks given at the Symposium will be video recorded and made available in our resource library and on our YouTube channel. We have dozens of talks from past symposia available as well. The most viewed video from the 2015 RNDS in Dallas, TX, “Advances in Neuro-Rehabilitation,” discusses the latest knowledge about rehabilitation after a rare neuro-immune disorder diagnosis, with a focus on activity-based restorative therapy and functional electrical stimulation (FES). The speaker, Dr. Becker, discusses how the spinal cord has endogenous stem cells, or stem cells that are already in the spinal cord, and how FES may be used to help these stem cells know where to repair damage. Dr. Becker will be giving an update on neurorehabilitation at the 2017 RNDS. Be sure to watch this video and others from past symposia, and we hope to see you in Columbus in October!

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Rare Disease Day 2017

Today marks the 10th annual Rare Disease Day, which takes place on the last day of February. The main objective is to raise awareness with the general public and decision-makers about rare diseases and their impact on patients’ lives. This year’s global theme is research.

Here at The Transverse Myelitis Association (TMA), we are dedicated and focused on facilitating research to advance knowledge about Acute Disseminated Encephalomyelitis (ADEM), Neuromyelitis Optica Spectrum Disorder (NMOSD), Optic Neuritis (ON) and Transverse Myelitis (TM), including Acute Flaccid Myelitis (AFM).

The TMA supports the efforts of researchers studying rare neuro-immune disorders by providing grant funding for research studies, supporting the training of clinician-scientists through our James T. Lubin Fellowship, and conducting TMA-led research studies. Through these channels, significant research is being done to better understand these rare neuro-immune disorders and develop improved acute therapies and symptom management strategies.

Our work is made possible through the generous support of our community, foundations, and corporations who believe in our goal to improve the quality of life of individuals living with rare neuro-immune disorders. By choosing to donate today in honor of Rare Disease Day, you are actively helping to advance research, enhance clinical care, raise awareness and advocate for rare neuro-immune disorders.

To learn more about the clinical studies and trials underway, please visit: https://myelitis.org/shaping-the-future/research/clinical-studies-trials

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Georgia Rare Disease Day

The momentum for Rare Disease Day has begun! Rare Disease Day takes place on the last day of February each year. The main objective of Rare Disease Day is to raise awareness amongst the general public and decision-makers about rare diseases and their impact on patients’ lives.

The Georgia TMA members gathered on Friday, February 17th, at the Georgia State Capital to educate about and advocate for individuals living with rare neuro-immune disorders. Six people living with transverse myelitis attended this special event, along with their family members and friends. The event featured three speakers who each gave their perspective on the importance of advocating for rare neuro-immune disorders.

The first speaker was Rare Disease Day co-coordinator and TMA support group leader, Kim Harrison. She told the crowd “It is our hopes and dreams that more funding will help find a cure for transverse myelitis and other rare neurological diseases.”

Butch Brosman, diagnosed with TM when he was six months old, spoke next on the importance of disability rights: “I am thankful to be here today to share my story and I hope it may help others get involved with the notion of disability rights.”

The third speaker, Mathew Hardy, shared his heartfelt experience of caretaking for his dear friend with TM before she passed away: “I am here today as a caretaker and a child’s perspective. What most people don’t understand is that living with someone with a disability is a calling.”

The day concluded with passing out pamphlets and answering questions about rare neuro-immune disorders.

On behalf of us all at The TMA, we extend our gratitude to everyone who helped make this event possible, with special thanks to Kim Harrison, Beth Nguyen, and Jodi Arminio for all of their planning and hard work. Well done, Georgia!

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Reflections from The 2016 Regional Rare Neuro-Immune Disorders Symposium

About 75 individuals gathered together at the University of Colorado for a day of education and networking at the 2016 Regional Rare Neuro-Immune Disorders Symposium in Aurora, CO on August 132016. The goal of this conference hosted by The Transverse Myelitis Association (TMA) and The University of Colorado, Denver was to provide an opportunity to bring together the community of individuals diagnosed with TM, AFM, NMOSD and ADEM, their families, caregivers, and medical professionals interested in these disorders to exchange information regarding diagnosis, research and treatment strategies. The diverse audience provided insight and perspective on the many facets of rare neuro-immune disorders and how they can impact quality of life.  For some attendees, this was the first time they had met others with a similar diagnosis and also met medical professionals interested in these disorders!

Dr. Teri Schreiner opened the symposium with an overview of Acute Flaccid Myelitis (AFM) and Acute Disseminated Encephalomyelitis (ADEM), followed by a discussion on NMOSD and TM by Dr. Jeffrey Bennett. This led the attendees into an informative diagnosis and treatment discussion panel on rare neuro-immune disorders.  Dr. Sara Qureshi, who completed her neuro-immunology Fellowship at University of Texas Southwestern and is currently at the Billings Clinic in Montana, joined us to provide an understanding of the symptoms after a non-traumatic spinal cord injury. Janet Dean, nurse practitioner from Kennedy Krieger shared the importance and role of rehabilitation in rare neuro-immune disorders.

After lunch, Anastacia Wall, PA-C, shared about managing fatigue, Dr. Augusto Miravalle provided some great insights on management of neuropathic pain and Dr. Schofield discussed autonomic loss of function. The participants had a lot of questions and contributed to an active discussion during the panels. The symposium closed with an overview of the research being conducted at the University of Colorado Medical School led by Dr. Timothy Vollmer followed by a question and answer session.

189470ca-3712-46c8-8787-a9d9437ca748Putting together a symposium of this kind takes a team effort and we are extremely grateful to Dr. Schreiner, Alina Rich, Alexander Stein at University of Colorado, our members and the medical professionals who donated their time to help individuals gain a better understanding of these disorders. One member, Lois Helvie, who attended the symposium captured the importance and spirit of this day nicely:

“I recently attended the Rare Neuro-Immune Disorders Symposium, held in Denver last week.  I have wanted to attend a symposium for many years, and this year it was in my hometown.  I’m so glad it was!

I was diagnosed with Transverse Myelitis in 2000.  At the time, it appeared that I had a complete recovery.  Now, after 16 years, I am finding that in spite of a “complete” recovery, I am now having issues that I believe have developed because of my TM. This symposium was one of the best things that could have happened for me.  I was able to ask questions of practitioners who spend their time studying TM and other rare neuro-immune disorders.  Every one of their presentations answered questions I have had for 16 years.  While I love my neurologist, he admitted he had only seen 4 cases of TM in his long years of practice, so being with physicians who had the answers, plus meeting others was just an incredible experience for me, and gave me confidence and hope that I can reverse or at least manage the issues I am now experiencing. If you have TM, ADEM, NMO, or any of these rare disorders, please try to attend next year’s symposium in Baltimore.  You will be so glad you did!”

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A Chance To Give Back

Dear TMA Families,

In July of 2010 our daughter was diagnosed with neuromyelitis optica spectrum disorder. Since 2008, she has experienced several attacks of the disease and it affected her spinal cord, brain, and vision. The Transverse Myelitis Association graciously took our daughter with NMO under their wing. the TMA hosts a family camp every summer for children that have been diagnosed with TM, NMOSD, ADEM, ON, and AFM. We have attended camp for the last 3 years. Our family loves the TMA camp! Our daughter has had the rare opportunity to meet kids who have similar experiences and diseases, and we have had the chance to meet supportive parents and knowledgeable doctors.

Because the TMA has helped us, we have been looking for a chance to give back. On June 22, 2016 our family hosted a TMA night at our local Chick-Fil-A. Many restaurants have fundraising opportunities and will give a portion of their proceeds to charities. We chose Chick-Fil-A because they donated a percentage of the evening’s profit, and customers did not have to say they were there for TMA night. We also asked a local vacation rental business if they would donate anything to be silent auctioned for the TMA. They donated a 2 night stay in a condo. In total we raised $308 for The Transverse Myelitis Association. This isn’t a huge amount of money but the thought occurred to me that if several of the families who have been helped by the TMA had their own TMA fundraisers, collectively we could raise a large amount of money.

With your involvement, we can turn a small donation into a huge one. If you are looking for ways to give back to the TMA, the restaurant fundraiser was a great option and was very easy to do.

For those who are thinking about it, here’s what we did!

  • We went in person to our local Chick-Fil-A and asked to speak with the manager.
  • We introduced ourselves and our child and asked if we could do a fundraiser night for our charity. We told them a little about The Transverse Myelitis Association and about our daughter.
  • Our Chick-Fil-A gave us a few dates to choose from and we chose an evening that worked best for us.
  • We contacted the TMA and let them know about our fundraiser date, and they posted on the TMA website and on Facebook.
  • We made a small poster (8×10 inches) in Microsoft Word inviting people to attend our fundraiser. We included the date, time, and a little info about The Transverse Myelitis Association and how NMO has affected our child.
  • We brought the poster to Chick-Fil-A a week before the event. Chick-Fil-A displayed it on their bulletin board.
  • We advertised the event on our own Facebook pages and invited friends and family.
  • On the day of the fundraiser, we brought TMA brochures and donation envelopes with us to the restaurant. Our Chick-Fil-A set up a small table by the entrance and we placed all of the TMA items on it along with another copy of our poster.
  • Our fundraiser was from 5-8pm. We enjoyed eating with friends and family that attended!
  • The day after the fundraiser, I called Chick-Fil-A and asked them what the total amount donated would be and if they would be sending the check directly to TMA. I made sure that I left a donation envelope from the TMA for them to put the check into. The tax ID# for the TMA is EIN 91-1780467 and it is a 501(c)(3) organization. All of this information is also available on the TMA website.
  • After getting the total donation amount, I sent an email to TMA and let them know to expect a donation.

And that’s it! Happy fundraising!!

Eric & Brooke Thomas

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2016 Regional Rare Neuro-Immune Disorders Symposium – Register Today

We are less than month away from the 2016 Regional Rare Neuro-Immune Disorders Symposium. This conference is open to all individuals diagnosed with AFM, TM, NMOSD, ON or ADEM, their families and caregivers. Medical professionals interested in these diseases are also welcome to attend.

Conference Objectives:

  1. Acquire an understanding of rare neuro-immune disorders (TM, NMOSD, AFM, ADEM and ON) and how they relate to each other
  2. Learn about the latest therapies and strategies to manage the symptoms associated with these chronic rare neuro-immune disorders, including clinical studies and future treatment strategies

Please join us!

University of Colorado Hospital
Anschutz Inpatient Pavilion 2
Bruce Schroffel Conference Center
12605 E 16th Avenue
Aurora, CO 80045

Registration Fee: $15

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