A Day of Awareness: The 2018 Northeast Ohio Walk-Run-N-Roll

The morning of April 29th, 2018 was sunny and clear, but a strong wind was wreaking havoc on the picnic area in Canton, OH where SRNA’s Walk-Run-N-Roll was to take place that afternoon. As paper plates and brochures flew off the tables, SRNA’s Community Partnerships Manager Jeremy Bennett hopped in his car to purchase tape and thumbtacks to hold down loose materials. Despite this chaotic start, many enthusiastic volunteers stepped in to help, and the event began without a hitch.

As participants arrived at the venue, they were greeted with the smell of delicious Greek food provided by Papa Gyros Greek Grill and pizza provided by Antony’s Pizza. Each attendee was offered a t-shirt and was able to peruse prize baskets to bid upon. As more adults and families arrived, the atmosphere was charged with energy and purpose; everyone was united in the mission to bring awareness to rare neuroimmune disorders and to raise funds to support the goals of SRNA.

Before it was time to walk, run, and roll around the park, Jeremy gave an enlightening speech on the research, education, and support provided by SRNA to those in our community. He gave praise to Heidi Bournelis, the organizer of the Walk, and her helpers, who were instrumental in the planning and success of the event. Heidi’s daughter, Alexis, was diagnosed with Acute Flaccid Myelitis when she was three years old, so this cause is close to her family’s heart. After Jeremy finished his speech, Alexis’s grandfather also spoke on the importance of raising awareness and funds in support of research and finding a cure for rare neuroimmune disorders.

Finally, it was time for everyone to line up and take off down the path outlined for the Walk-Run-N-Roll. A steady stream of over 100 participants wound its way around the park as talking and laughter filled the air. Although the atmosphere was light, serious conversations were also held. As I walked around the park, I spoke to Heidi about her family’s initial struggle to get a diagnosis for Alexis. Her doctors had first failed to diagnose her and suggested that her symptoms may be psychosomatic, i.e. she was faking her symptoms. However, after many tests and a month of waiting, Alexis was finally diagnosed. Her story served as a reminder that SRNA’s work to spread awareness is far from over.

As the Walk-Run-N-Roll came to a close, families and friends said goodbye to one another as volunteers cleaned up the picnic area. I was happy to see many new friendships form over the course of the event. I hope that all the participants walked away with a better knowledge of rare neuroimmune disorders and the impact they can make by supporting research and education efforts.

Announcing the 2018 Regional Rare Neuroimmune Disorders Symposium

The Siegel Rare Neuroimmune Association, in partnership with Boston Children’s Hospital Center for Pain and The Brain, is excited to host the 2018 Regional Rare Neuroimmune Disorders Symposium (RNDS) in Boston, MA this October! The RNDS is an education and advocacy conference for families, caregivers and individuals diagnosed with Acute Disseminated Encephalomyelitis (ADEM), MOG Antibody Disease, Neuromyelitis Optica Spectrum Disorder (NMOSD), Optic Neuritis (ON), and Transverse Myelitis (including the subtype Acute Flaccid Myelitis).

The objectives of this event are:

  1. Gather an understanding of the knowledge to date on the biology and causes of rare neuroimmune disorders and how they relate to each other;
  2. Learn about the latest medical and surgical strategies to manage the symptoms associated with these chronic rare neuroimmune disorders.

This conference is a great opportunity for individuals diagnosed with a rare neuroimmune disorder and their families to learn about these disorders and how to better advocate for themselves. Medical experts will be available to answer questions and provide the most up-to-date information regarding these disorders. We also encourage any medical professionals wanting a better understanding of rare neuroimmune disorders to attend.

The 2018 Regional RNDS is a one-day event, which will take place on Saturday, October 27th, 2018 at The Joseph B. Martin Conference Center at Boston Children’s Hospital. For more information, and to register for the event, please visit https://wearesrna.org/event/2018-rnds/.

About The Center for Pain and the Brain

The Center for Pain and the Brain is a multidisciplinary team comprised of leading neurologists, physician-scientists, psychologists, physicists and neurobiologists. Founded and directed by David Borsook MD PhD, the Center spans Harvard Medical School, Boston Children’s Hospital, Massachusetts General Hospital and McLean Hospital. Their research focuses on the discovery of novel pain pathways, developing novel high-throughput methods for evaluating analgesics, and incorporating results from animal research into human applications. They are one of the few Centers that evaluates both pediatric and adult patient groups. Conducting neuroimaging studies in both acute and chronic pain cohorts as well as experimental pain in healthy volunteers, these researchers seek to transform and improve the field of pain medicine.

Arizona’s SRNA Community Gets Inspired

By Kate Krietor

March 24th was a first for the Arizona SRNA community. We gathered in Phoenix with our families and friends to show support for SRNA by sharing our stories and flexing our fundraising muscles. The energy and support generated by the 110 participants was gratifying to the volunteer organizers and set the stage for an ongoing Arizona SRNA community.

We walked and rolled, we ate and we played, but most importantly, we gained strength by sharing our stories.

The youngest was a bouncy 3-year-old who got TM when she was just one. Maggie walked at 10 ½ months and had to relearn rolling over and crawling. Her Mom wrote, “Her fight and determination and strength were an inspiration to others, even from someone as young as Maggie.”  Our photographer tried hard to get shy Maggie to smile and it took balloons, wagons, and that blue sea of walkers to get her racing and laughing with her small friends. Her story was shared via a story sheet with her beaming smile.

Brittani, a high school senior and varsity athlete who juggles school, clubs and a job like many teens, was our keynote speaker. Brittani got TM at 11. She got out of bed one day and landed on the floor unable to walk.  Her comments were amazing. Doctors told her she wouldn’t play soccer again, but she was determined, and a year later was back on the field. She was captain of her Varsity team last year. “I’m resilient,” she said. “My Mom reminds me TM takes you two steps forward and one step back.”

Jason, a local TV reporter, knows how to tell a story. Imagine being on your honeymoon in Hawaii, sitting by a pool and slowly realizing you are becoming paralyzed. His wife came to the walk wearing a T-shirt that said, “TM ruined our honeymoon but not our lives.” Jason was able to share a bit of his (and our) story on his stations, Channels 3 and 5.

There were other stories too. Jordan came with his 22 supporters all wearing Team Jordan 24 shirts! His Mom shared his story of playing high school sports when TM upended his life. Jordan is adapting to a wheelchair after having overcome being on a ventilator. He is a fighter.

And then there is our story, the story of five ‘newbie’ event planners. The idea of putting on a walk was born on Oct 22, 2017 at the end of SRNA’s Rare Neuro Immune Disorders Symposium. We were, for the most part, just meeting each other for the first time and inspired to take hope back to Arizona – to create a community, tell our stories and raise awareness!  We inspired each other to organize the walk (in just 9 weeks!) and exceed our goals for community building, participation, funds raised and just plain old fun!

Arizona is a big, diverse state. The event was a coming-together facilitated by dedicated volunteers….thank you Gail, Kate, Julie, Barb and Deb, and to the strong support of SRNA staff for their willingness to “seed” the event and for their critical technical support. As a community we are resilient, we defy the odds and we make things happen. See you all next year in Tucson!

Author Night with Margaret Peterson Haddix

Books have the ability to transport readers to a new world, and that’s how participants felt at SRNA’s Author Night with Margaret Peterson Haddix on March 28th. The event was held in Columbus, OH and benefited SRNA’s Pauline H. Siegel Eclipse Fund for Research. Pauline, one of SRNA’s founding members, was a teacher in the Worthington School District for 25 years. She was an advocate for learning and loved Margaret Peterson Haddix’s books for children and teens. As attendees gathered to listen to the author speak, Pauline’s joyful spirit was in our hearts.

The night started with a meet and greet with the author, and refreshments were provided by members of the book club to which Pauline belonged. Attendees munched on cheese and crackers, grapes, and chocolate buckeyes while mingling with the author and other guests. While some of the attendees were members of SRNA, many attendees had come solely because of their love of Margaret Peterson Haddix’s books. We were happy to spread awareness and explain our mission to those who had not known of SRNA prior to the event. Canine Companions for Independence (CCI) was also in attendance with two very special guests: golden retriever puppies in training to become service animals. Pauline’s service dog, Kazu, was her constant companion who she loved, and CCI’s attendance was a beautiful tribute to Kazu and Pauline’s bond.

When it was time for Ms. Haddix’s presentation, everyone piled into the auditorium and seated themselves in anticipation. Ms. Haddix shared photos from her recent trip to Spain as part of her research for an upcoming book. She also told a fun story about her daughter and a search for the perfect swimsuit when she was a child. But the highlight was the Q&A when several of the young people in the audience got to ask Ms. Haddix about her favorite books and characters. Pauline’s granddaughter even asked Ms. Haddix who her favorite Star Wars character was. The answer was Princess Leia, of course!

As the night came to a close, guests were afforded a last chance to speak with the author and get their books signed. Smiles and conversation were exchanged in the joyful atmosphere created by Ms. Haddix’s insightful presentation. The members of Pauline’s book club organized a successful event that served as a fitting tribute to Pauline’s memory, and SRNA is extremely grateful for their work in putting this event together.

Observations from Rare Disease Day

By Jeremy Bennett, Community Partnerships Manager

Rare Disease Day was on February 28th, but many states hold advocacy events throughout February, March, and April. I was invited by our Georgia Support Group Leader, Kim Harrison, to attend the Rare Disease Day event on February 15th at the State Capitol in Atlanta. What follows is an account of my experience.

Kim and her husband, Brian, picked me up from my hotel in the morning and we made the drive to the Capitol. We were fortunate to find parking nearby, but I soon learned that ‘nearby’ is a relative term, as we had to walk around to the back of the building to access the only wheelchair accessible entrance. Watching Kim navigate steep sidewalks, narrow doorways, and small elevators was a constant reminder of the need for better accessibility.

We made it to the designated area and began to set up our table for the event where I was introduced to two representatives for the National Organization for Rare Disorders (NORD), Kristen Angell, Associate Director of Advocacy, and Beth Nguyen, RN, Georgia Rare Action Network Ambassador. NORD promotes Rare Disease Day and these advocacy events. I would recommend visiting rareaction.org to learn more about these events and view the schedule of upcoming Rare Disease Day events in places like New Jersey, Nebraska, Alabama, Texas, and many others.

I was also introduced to our Georgia Support Group members. My favorite part of my job is getting to meet the people in our community. I went five years before meeting another person with transverse myelitis, but during Rare Disease Day I met Shawn who was diagnosed in the 1980s and just attended his first support group at the beginning of February! It’s never too late to get involved, and the power of being in the same room as people who have also lived with a rare disease was on display throughout the day.

Dr. Erik Fisher gave an impassioned speech, and the people in attendance filled the halls of the Capitol with their voices, demanding to be heard by the politicians on their way to meetings. One such person, Representative Sharon Teague, spoke about her work with under-served communities. She said she’s always had someone on her staff that was either deaf, blind, or had some sort of disability. She was invited by her intern, Rasheera Dopson, who is a motivational speaker with a rare craniofacial condition. If only more representatives followed Teague’s lead, the rare community might not have to yell as loud as Dr. Fisher urged.

Later, Kim was asked to speak and generously gave her spot to me, so I talked about the work SRNA does. But the last words of the day were possibly the most powerful. They came from Beth’s young daughter who talked about how her mom is a hero. I agree. After listening to the stories from those in attendance, I can say there were many heroes there that day.

SRNA at the Ohio State University MS Education Day

The Siegel Rare Neuroimmune Association was invited to attend the Scarlet and Gray Multiple Sclerosis (MS) Patient Education Day in Columbus, Ohio on December 2, 2017. This event was hosted by The Ohio State University Wexner Medical Center, and provided an opportunity for patients to learn about management of symptoms and the latest research from the experts at Ohio State.

SRNA had a table at the event, and provided information and resources to attendees. While SRNA’s advocacy mainly focuses on ADEM, AFM, NMOSD, ON, and TM, we also have an abundance of resources for those diagnosed with MS since the disorders are closely related. MS is a chronic inflammatory demyelinating disease of the central nervous system, and sometimes people with MS are mistakenly diagnosed with TM. By partnering with The Ohio State University to spread awareness and advocate for these diseases, SRNA is pursuing our mission to support and advocate for individuals and their families diagnosed with rare neuroimmune disorders of the central nervous system; to promote awareness and to empower individuals with rare neuroimmune diagnoses, families, clinicians, and scientists through education programs and publications; and to advance the scientific understanding of and therapy development for these rare disorders by supporting the training of clinician-scientists dedicated to these rare diseases and by supporting basic clinical research.

One of our goals in attending education events such as the Scarlet and Gray MS Education Day is to strengthen our relationship with medical centers and medical professionals. Through these efforts, we hope to further collaborate with The Ohio State University to develop educational programs, advocacy events, and research related to rare neuroimmune disorders. Dr. Jaime Imitola, a neuroimmunologist at The Ohio State University Wexner Medical Center, treats patients with rare neuroimmune disorders regularly. He attended SRNA’s 2017 RNDS and gave a talk on Hope vs. Hype: Are we ready for stem cells in neuroimmune disorders? He will also be a guest speaker on our upcoming podcast, Stem cells as treatment for rare neuroimmune disorders on January 23, 2018.

SRNA is excited to be able to connect with patients and medical professionals of The Ohio State University Wexner Medical Center, and we hope to connect with other medical centers across the United States. We encourage those diagnosed with rare neuroimmune disorders to provide SRNA’s information to their physicians, which will help spread information and awareness throughout the medical community. If you are aware of a medical center that may be interested in starting a collaboration with SRNA, we would love to hear from you! You can email [email protected] to share your ideas.

Happy Thanksgiving from SRNA!

From all of us at SRNA, we wish you a Happy Thanksgiving! We hope the holiday gives you an opportunity to be with family and friends, reflect, and share gratitude.

Did you know that #GivingTuesday is coming up on Tuesday, November 28th? #GivingTuesday is a global day of giving that is celebrated on the Tuesday following Thanksgiving, Black Friday, and Cyber Monday.

There are a few ways you can join in on #GivingTuesday, and support non-profit organizations like SRNA. Donations to SRNA fuel our research and education programs that are improving the quality of life of individuals with rare neuroimmune disorders.

  • Donate on our Facebook page: The Bill and Melinda Gates Foundation and Facebook have partnered to match donations up to $1000 per donate button on #GivingTuesday, starting at 8 AM ET. Facebook is also waiving donation fees on #GivingTuesday, meaning 100% of your donation will reach SRNA.
  • Create your own fundraising page on our website: If you don’t want to use Facebook, or don’t have an account, you can always create a fundraising page on our website. You can set a fundraising goal, and send the link to your family and friends.
  • Review the latest resources on our website and send a donation via check or directly on our website if you find them helpful: Did you know we have a resource library that includes newsletter articles, podcasts, symposium videos, and summaries of new research articles? We also have the Myelitis Helpline, an online tool that was developed by The Siegel Rare Neuroimmune Association to answer your questions about our organization and rare neuroimmune disorders.

This Thanksgiving, SRNA is thankful for the support of our community members, which has allowed us to drive research and other programs that improve the lives of those with rare neuroimmune disorders. From all of the staff and board members of SRNA, thank you!

My First Rare Neuroimmune 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 Siegel Rare Neuroimmune 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 SRNA. 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 SRNA 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 Neuroimmune 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 SRNA 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 Neuroimmune Disorders Symposium will be available in our Resource Library and on our YouTube Channel.

How to Experience the RNDS Through Social Media

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

SRNA 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.

Register Now for the 2017 Rare Neuroimmune Disorders Symposium!

We are two weeks away from our 2017 Rare Neuroimmune 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 neuroimmune 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 neuroimmune 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.

SRNA 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 [email protected]. We hope to see you in Columbus soon!