A letter from SRNA’s President
Written on 5/11/22
It is my honor to present the Siegel Rare Neuroimmune Association 2021 Annual Report to you. Since our inception, we’ve worked diligently to earn your trust by being transparent about our work and expenditures. We receive generous support from our community through charitable contributions and your essential volunteer efforts. We know that there is significant competition for good cause dollars, particularly during these uncertain times for our economy. I urge you to read through this report carefully.
After Pauline’s death in 2017, and when we changed our name to the Siegel Rare Neuroimmune Association in 2019, we adopted the tagline, “Connect, Care, Cure.” Our mission has always been and remains encapsulated in this concept.
Connect
Offering support has been fundamental to our work since 1994. Whether it occurred through Pauline and I answering the telephone in our kitchen or responding to emails, Jim’s Transverse Myelitis Internet Club, or the establishment of our support groups across the country and world, we have been about connecting people in our community to offer support.
This past year, we initiated another critical support: the Peer Connect Program. Whether you are newly diagnosed or have been living with a rare neuroimmune disorder for years, we can match you with someone to offer support. Peer connect leaders are volunteers who have been diagnosed with a rare neuroimmune disorder.
It can be life-changing to share experiences with others who truly understand what it means to live with or care for another with a rare neuroimmune disorder and that is why the work being done by Peer Connect Leaders like Selena is so important.
“Receiving a rare neuroimmune diagnosis comes with a lot of very BIG emotions. You try to navigate your emotions on your own and talk to your medical team about your diagnosis but there is something missing, an understanding, empathy and compassion,” SRNA helped me realize I am not alone and neither are you. It is ok and normal to feel those big emotions that you are feeling. As a peer connect leader, I have been able to offer another perspective to my peers.”
Selena Gagnon, Peer Connect Leader
Care
Our community has been particularly vulnerable to the impact of COVID-19 and its multiple manifestations. At the beginning of the pandemic, we understood so little about the virus and its consequences. It took time before even the most reliable sources of information had meaningful news to share. What everyone understood about the virus was made more complicated by unreliable resources prevalent on social media. It quickly became apparent to SRNA that, given the difficult issues faced by people with rare neuroimmune disorders, we needed to develop and disseminate reliable information to our community. Working with medical professionals and specialists, we created various sources of information, available on our website and updated regularly with the most recent and accurate information. There are numerous articles and links to the best information available all in one place. The video interview series with SRNA Board Member Dr. Benjamin Greenberg has been a critical resource.
The videos with Dr. Greenberg covered everything from what we understand about the virus and the variants, the symptoms from the disease, the treatments available, testing protocols and advice for people who contract the virus, guidance for people who are on long-term treatments for recurrent disease, and an abundance of direction about the vaccinations. Our medical specialists have done an exceptional job of reviewing the research, the different vaccination trials, and the process for obtaining FDA approval. SRNA has also presented valuable information about mitigation strategies, including masking and hygiene issues.
We are grateful for all our medical professionals who, like Dr. Greenberg, are contributing with their expertise and helping us provide valuable resources to our community, enabling them to continue to make well-informed decisions about COVID-19.
“As someone who was diagnosed with TM in 2015 who was unsure about getting the COVID-19 vaccines, I found SRNA’s videos with Dr. Greenberg about the vaccine extremely helpful. Based on those I found my courage and went and got vaccinated for COVID — and to my great relief there were no surprises.”
Philip Halprin, SRNA Member
Cure
Pauline always believed that her hope for the future was synonymous with research. I was so honored and grateful when SRNA established the Pauline H. Siegel Eclipse Fund for Research. One of the recent accomplishments of SRNA’s Eclipse Fund for research is the establishment of The Progress Grant for NMOSD made possible by a research grant from Horizon Therapeutics. This grant aims to help the broader NMOSD community understand how to improve the diagnosis, treatment, and quality of life of people with NMOSD. The application process opened in 2021, and Dr. Sammita Satyanarayan from the Icahn School of Medicine at Mount Sinai was awarded $25,000 for her research study entitled, “Assessing the impact of social disparities of health on disability and access to care in NMOSD patients.”
“If we better understand some of these factors that could be associated with differences in either access to care or disability, we can actually try to start addressing them and advocate for our patients on multiple levels.”
Dr. Sammita Satyanarayan, Progress Grant Awardee
We are proud of our accomplishments in 2021. Our staff and volunteers have worked hard to drive connections, offer care, and keep hopes alive for cures through the research we encourage and support. You can find the details of this work and the people behind it in the following pages of this report. Selena, Dr. Greenberg, Dr. Satyanarayan, and all of us at SRNA are advocating and working for you. Thank you to all those in our community who continue to support this work.
Sandy
