27 Reasons Why to Give

SRNA celebrated our Anniversary on July 31st, 2021. We are proud of the accomplishments we have achieved over the last 27 years. From our support groups to our annual symposium, from our podcasts to our Family Camp, from our Myelitis Helpline to our research projects, we work to serve our community and improve the lives of people with rare neuroimmune disorders.

For our Anniversary, we asked members of our community who have supported us, “Why do you give?” Some have given hours of their time by leading support groups. Others have shared their stories with our community, to help others feel less alone and bring awareness to these disorders. Some have held Walk-Run-N-Rolls or other fundraisers. And others have given donations to help support the work that we do. We compiled these reasons in our “27 Reasons Why” Anniversary Campaign, which we shared on our social media accounts. You can view some of the “reasons for giving” below.

Education, support, and research are more effective by sharing experiences and knowledge collaboratively. There is strength in numbers. That is why we are asking for your help in continuing our work and supporting us so that we may continue improving the lives of our community members for the next 27 years and beyond. Whether you wish to give through sharing your story, becoming a Support Group Leader, hosting a fundraiser, or donating to our organization, you will help change the lives of those impacted by rare neuroimmune disorders.

The 2020 Paralympic Games in Tokyo

The 2020 Paralympic Games are currently taking place in Tokyo, Japan. This event brings together the most accomplished athletes from all over the world to compete in parasports. The Paralympic Games began on August 24, 2021 and will take place until September 5th. Members of SRNA’s community have competed in many Paralympic Games throughout the years. You can view an interview with Paralympians Dr. Anjali Forber-Pratt and Amanda McGrory about their experiences competing in the Paralympics here.

Several members of the rare neuroimmune disorder community are competing in this year’s games! We hope you will join us in cheering them on and following along their journeys as they represent our community in the Games! The Paralympic schedule can be found here, and the various events will air on NBC. Below are the Paralympians who are competing, along with their sport, nation, diagnosis, and Instagram handle (if applicable).

Cassie Mitchell | Para Track & Field | USA | NMO

Abby Gase | Para Swimming | USA | TM| Instagram: abby_gase

Cheri Madsen | Para Track & Field | USA | TM | Instagram: cheri.madsen

Dana Mathewson | Wheelchair Tennis | USA | TM | Instagram: dana.mathewson

Matt Lesperance | Wheelchair Basketball | USA | TM |Instagram: matt_lesperance_6

Amanda McGrory | Para Track & Field | USA | TM | Instagram: alittlechipped

Gordon Reid | Wheelchair Tennis | United Kingdom | TM | Instagram: gordonreid

Natasha Baker | Para Equestrian | United Kingdom| TM | Instagram: nbakerpararider

Philip Pratt | Wheelchair Basketball | United Kingdom | TM | Instagram: philippratt11

Graham Paull | Paracanoe | South Africa | TM

View this post on Instagram

A post shared by Gordon Reid (@gordonreid)

Toh Wei Soong | Para Swimming |Singapore | TM | Instagram: tohweisoong

Heath Davidson | Wheelchair Tennis | Australia | TM | Instagram: heathdavidson13

Madison DeRozario | Para Track & Field | Australia | TM | Instagram: madison.____

Nath Arkley | Para Track & Field | Australia | TM | Instagram: nathenialarkley

Nic Beveridge | Para Triathlon | Australia | TM | nicbeveridge

We wish all the athletes good luck as they compete in this year’s Games!

Congratulations to Alyssa on Her Ironman 70.3!

Recently, a member of the SRNA community, Alyssa, competed in an Ironman 70.3. You can read about it here. Alyssa raised money in support of SRNA with a goal of $5,000. Not only did Alyssa cross the finish line, she also surpassed her fundraising goal and raised $5,880! We want to offer our congratulations and gratitude to Alyssa, who continues to be an amazing advocate for those with rare neuroimmune disorders.

Below is a video Alyssa created that documents her journey of training for and completing the Ironman 70.3.


Thank you, Dr. Anjali Forber-Pratt

By Sandy Siegel

Congratulations to now former SRNA Board Member, Anjali J. Forber-Pratt, Ph.D., who recently joined the Administration for Community Living (ACL) as the new Director of the National Institute on Disability, Independent Living and Rehabilitation Research (NIDILRR). She has served on the Board of Directors for the Siegel Rare Neuroimmune Association since 2013. Anjali has been a member of our community for a very long time. Her story is remarkable, and I encourage everyone to take the time to learn about Anjali. Anjali was diagnosed with transverse myelitis as an infant.

I first met Anjali shortly after she published a book for children about being a Paralympian. She co-authored an educational kids’ coloring book about disabled sports titled, “Color Learn & Play: All About Sports for Athletes with Physical Disabilities”. Anjali’s athletic accomplishments are exceptional. She is a two-time Paralympian and medalist in the sport of wheelchair racing. She competed in Beijing and London and is the former world record holder in the T53 200m. Anjali’s academic accomplishments are also remarkable. She holds a doctorate in education and specializes in research on disability identity. Anjali most recently served as an Assistant Professor in the Department of Human and Organizational Development at Vanderbilt University. She is recognized nationally for her leadership and service. She presents regularly at state, national, and international conferences and is author on 19 peer-reviewed journal articles and numerous chapters. She was honored by Diverse: Issues in Higher Education as a 2018 Emerging Scholar. She was recognized in 2013 by President Obama’s administration as a Champion of Change and recently received an award from SHAPE America as the 2018 Guiding Woman in Sport. She is involved with disability advocacy efforts related to access to employment, education and sport through public speaking and media appearances. She has been actively involved to help create inclusive sport opportunities for individuals with disabilities in Bermuda, India, Zambia and Ghana. She has appeared on several television programs and radio shows, including NPR, The Stream, and Sesame Street, and has been quoted in the national print press, including The Boston Globe, The New York Times, Huffington Post, USA Today, and Runner’s World.

Anjali also happens to be a wonderful human being. After getting to know her, we thought she would be an excellent role model for the children who come to our camp. We were so right. Anjali has become a regular participant in our SRNA Quality of Life Family Camp. The children love getting to meet her and having their photograph taken with her. They love that she is a regular in our messy games. She is a presenter in our education program, and she makes herself available to meet with parents and children. Anjali also helps to lead the discussion sessions with the children at camp, along with Dr. Lana Harder. Anjali is also a regular presenter at our education programs and our podcasts.

Her contributions to our community and to our organization have been immeasurable. As she takes her new position, she will continue to make a difference for all of us through her leadership in research and developing policy for the disability community. We are so proud of Anjali. We wish her the best in her new endeavor.

See below for some of Dr. Forber-Pratt’s work with SRNA:


Meet SRNA’s New Administrative Assistant

Please welcome Angel Simpelo, SRNA’s new Administrative Assistant! Committed to community engagement, Angel has a background in fundraising and guiding volunteers to provide resources to populations such as veterans, people who have disabilities, and people who have low income or are experiencing homelessness. She holds a Bachelor’s degree in Digital Media from San José State University. She enjoys spending quality time with family and friends, as well as photography, gardening, hiking, and travelling.


By Angel Simpelo

From a young age, I observed how people make a difference when they organize. From grade school to college, I volunteered with local groups to provide essential services. The world rapidly changed around me, and I felt moved to serve humanity. I shifted from the for-profit world to the nonprofit sector. I have worked together with donors and volunteers to provide resources to populations such as veterans, people who have disabilities, and people who have low income or are experiencing homelessness.

When I researched the Siegel Rare Neuroimmune Association and considered working here, I immediately felt inspired. I have two family members who have lived with debilitating disorders. I have witnessed firsthand how associations like SRNA profoundly helped my family to find support and comfort. The benefits from dependable advocates and a sense of community are huge. I know that this collaborative work is life-changing.

Now that I am a part of SRNA, I find myself surrounded by compassionate and dedicated staff. When I think about our support groups, I envision networks of brilliant people uplifting one another and growing as a family. I have been told that our education programs and events are informative and transformative, empowering people and offering hope, while reaching more than 100 countries around the world. It was amazing to learn that, since our founding in 1994, SRNA has grown to more than 14,000 members.

As my colleagues fulfill SRNA’s mission by offering support and advocating for individuals and their families diagnosed with rare neuroimmune disorders, I hope that some peace comes along with that contact. I can see that the long-lasting impact on the world will be enormous, as SRNA engages in research and supports the training of clinicians and researchers specializing in these disorders. As we continue to build a collaborative and dedicated clinical care network, these many points of light are spreading to advance scientific understanding.

To connect with the many lives affected by these rare neuroimmune disorders is incredible. As I read the experiences that our members and their loved ones have shared, I am humbled and honored to do this work. I know that I have joined an organization that works tirelessly to make a difference for patients and their families. Though we may have to wait to meet face to face, I often think about the children, adolescents, and adults who we serve. I am grateful to work alongside our community of members, staff, volunteers, Board of Directors, Medical and Scientific Council, educators, and researchers.


Read about what we accomplished in 2020!

As the world changed in 2020, we strived to adapt our programs to offer our community the same support, education, and scientific advancements that we always have in the past. It is with great pride we present our 2020 Annual Report.

In 2020, the Rare Neuroimmune Disorders Symposium transitioned to an all-virtual format, which allowed over 400 participants to register from 22 countries and laid the foundation for future virtual RNDS elements. The annual Quality of Life Family Camp was held virtually as well, and families were able to connect with medical experts in rare neuroimmune disorders. We created a COVID-19 resource center on our website to keep our community informed about the impact of this pandemic on people living with ADEM, AFM, MOGAD, NMOSD, ON, and TM. We launched a new podcast series, ABCs of NMOSD, and hosted nine Ask the Expert podcasts that covered a variety of topics. Because of your enthusiastic participation, our continuing research efforts with the SRNA Registry were significantly expanded, and we introduced a study on how the COVID-19 pandemic was impacting our community. You can read about these programs, accomplishments, and so much more in our 2020 Annual Report!

Read about our year in our 2020 Annual Report.


Announcing The Progress Grant for NMOSD

April 1, 2021 – The Siegel Rare Neuroimmune Association’s Eclipse Fund for research is excited to share the establishment of The Progress Grant for NMOSD made possible by a research grant from Horizon Pharmaceuticals (formerly Viela Bio). The Eclipse Fund in memory of Pauline H. Siegel was established to support and accelerate research that will directly impact quality of life for the members of our community.

This grant will fund research aimed to improve understanding of neuromyelitis optica spectrum disorder (NMOSD) and positively impact those living with NMOSD, specifically among Asian and African American populations. Research has shown that these groups are disproportionately affected by NMOSD, and SRNA hopes additional research can help the broader NMOSD community understand how to improve diagnosis, treatment and quality of life of people with NMOSD.

“We are happy to continue our partnership with Horizon Pharmaceuticals through The Progress Grant for NMOSD,” shares SRNA’s President and co-founder, Dr. Sanford Siegel, “This is an important milestone for the greater NMOSD community, specifically those most notably impacted by this life-altering disorder.” SRNA is a not-for-profit organization dedicated to the support of children, adolescents, and adults with a spectrum of rare neuroimmune disorders including NMOSD.

“The Progress Grant for NMOSD furthers the important collaboration between Horizon Pharmaceuticals and the rare disease advocacy community,” states Dr. Quinn Dinh, M.D., Vice President, Medical Affairs at Horizon Pharmaceuticals “We applaud SRNA for the work they have done for those living with NMOSD and other rare neuroimmune disorders and are honored to support in further research within these greatly impacted populations.” Horizon Pharmaceuticals received approval for Uplizna® (inebilizumab-cdon) for the treatment of NMOSD in June 2020.

More information on the grant application requirements and timeline will be provided on April 5th, 2021 when the RFP will be released.


Join us this #Carentine’s Day

February 14th is around the corner, and we know that most people think of this day as a celebration of love. Although Valentine’s Day is often thought of as a celebration of romance, love can take many different forms. It is found through community, friendship, and family. It is expressed through empathy, support, and caring. That’s why this February 14th, we are asking you to help us celebrate Carentine’s Day, a day in which you can show your support for the SRNA community and our mission.

You can help us in the following ways:

  1. Donate to SRNA’s #carentine Facebook Fundraiser
  2. Create your own #carentine Fundraiser on Facebook
  3. or, donate directly through our website, where you will be able to send a #carentine e-card and send your love to someone special!

We appreciate any help you can give us, whether you donate $5 or $500. Every bit helps. These funds are used to support our programs, such as our support group meetings, our Ask the Expert podcasts, the Rare Neuroimmune Disorders Symposium (RNDS), and the SRNA Quality of Life Family Camp.

Will you be our carentine?

End of Year Reflections

2020 was difficult. But despite the challenges the world faced in 2020, we at SRNA are proud of the accomplishments our community achieved this year. In these uncharted times, we broke new barriers to further our mission. Let’s take a look back at our top 20 accomplishments of 2020 as we prepare to enter the next chapter.

In 2020, we:

  1. Welcomed 571 new members into the SRNA community
  2. Held our first Rare Disease Month campaign
  3. Attended our first Reeve Summit to learn and connect with others in the spinal cord injury community, and to spread our mission
  4. Published two issues of the SRNA Magazine
  5. Held our first virtual Quality of Life Family Camp
  6. Funded five research publications
  7. Launched a brand-new podcast series, ABCs of NMOSD, in collaboration with the Connor B. Judge Foundation, The Guthy Jackson Charitable Foundation, and The Sumaira Foundation for NMO, which was made possible through a patient education grant from Viela Bio
  8. Created a COVID-19 information page to keep our community informed
  9. Co-hosted the first virtual Rare Neuroimmune Disorders Symposium, along with our partners at University of Utah Health
  10. Added 13 medical professionals to our Medical Professional Network
  11. Hosted 9 episodes of our Ask the Expert Podcast Series
  12. Launched our new Peer Connect program
  13. Held our first virtual Walk Run ‘n Roll, with the support of our Wisconsin support group leader, Maleah Moskoff
  14. Awarded the 2019 Distinguished Service Award to several of our volunteers, who help make our work possible and further SRNA’s mission
  15. Held our first AFM Awareness Month in July
  16. Introduced 10 new Hope Ambassadors
  17. Held our first virtual support group meetings
  18. Sponsored the AFM Virtual Symposium, which was organized by the AFM Working Group, Johns Hopkins Medicine, and Kennedy Krieger Institute
  19. Made transcriptions available for all new symposium videos, podcasts, and other audio resources in our Resource Library
  20. Launched a research survey to gather information on how the COVID-19 pandemic is affecting our community

Thank you for being a part of yet another hopeful year!

We’re also reaching the end of our 2020 year-end fundraising campaign, and we’re running short of our target. If you’re able, please help us meet our goal today — at whatever level feels right to you. You can make a tax-deductible gift on our website or send a check to SRNA at PO Box 826962, Philadelphia PA 19182-6962.

Every single gift will help us continue to serve as a trusted resource and support system for all those with rare neuroimmune disorders.

Wishing you and your loved ones a healthy, joyful, and restorative new year ahead.

With love and gratitude,

— SRNA

Thank you to our educational sponsors

All educational content and programs are solely developed by the SRNA staff, members of the scientific board and approved by Board of Directors.

Thank you to our partners