SRNA

There has been no other year like it. I could list the events that have transpired since March 2020. I won’t. I hope you and your family are doing okay. We’ve all suffered loss over this past year. Some of those losses have been the most devastating. We think about all of you and we wish the best for you in all aspects of your lives, starting with your health and the health of your family.

I am proud to present the Siegel Rare Neuroimmune Association Annual Report to share all our activities, events, and accomplishments from 2020. I am so proud of the SRNA staff and our volunteers. In the face of such chaos all around us, we have remained focused on the work we perform for our community. SRNA staff have been remarkably creative in delivering services and programs. We have moved seamlessly into the virtual world to bring you education and support. We held our Quality of Life Family Camp, support group meetings, and the Regional Rare Neuroimmune Disorders Symposium virtually this year, and were able to reach people across state lines and globally. We were able to expand our podcasts and webinars this year, focus more on research, and were able to launch the ABCs of NMOSD podcast this year to educate our community. As so much of our lives and our concerns have been focused on the pandemic, we created a COVID-19 resource page and regularly update our information about SARS-CoV-2 (the virus that causes COVID-19) and its impacts on people with rare neuroimmune disorders. The interviews conducted by SRNA’s GG deFiebre with Dr. Benjamin Greenberg have become a critical resource for people who are making decisions about receiving the vaccinations. We are grateful to our members, sponsors, and partners for your support of our work.

Like all of you, my life over the past year was turned on its head. I am so looking forward to looking forward. Listening to the infectious disease and public health specialists, it is likely that our society and our communities and our lives will slowly but progressively be able to open and expand safely. We will still need masks. We will still need to be aware of social distancing. We will still need to be diligent about washing hands. But slowly we will get our lives back. It is also likely that throughout 2021, our programs are going to remain virtual until it is entirely safe to travel. Let’s hope that we can see each other again, at support group meetings, at our symposium, and at camp in 2022.

While the focus of this Annual Report is all the work we accomplished in 2020, our focus for this coming year is to grow the SRNA Registry. I have been doing this work for more than 25 years. My greatest disappointment and frustrations have been just how little we’ve learned about idiopathic TM and ADEM over that period. Great strides have been made in NMOSD. MOGAD and AFM have been very recent discoveries. The only way for the medical world to understand ADEM, AFM, MOGAD, NMOSD, ON, and TM, is for you to be willing to share information about your experience. With greater understanding, better acute treatments, more effective long-term treatments, and then ultimately, cures, could be possible. In my mind, cure means that we know enough to avoid the first attack before it happens. That will require us to learn and understand so much more than what we know today. The SRNA Registry is a great way for us to move this critical process of understanding forward – on ALL the rare neuroimmune disorders under our umbrella. Your investment in this project would be about 45 minutes of your time through sharing your experiences. As we learn more, we hope to follow your experiences over time. We need to help medical researchers who are studying these rare disorders.

I urge you to get involved in the critical work SRNA is doing. Please do this for our community and for yourself!

I hope to see you and my mother and my grandchildren sometime soon. Please take good care of yourselves and each other.

Sandy