A message from SRNA’s President

12/5/22

[00:00:00] I’m Sandy Siegel, president of the Siegel Rare Neuroimmune Association. For almost two decades, the work of our organization was done entirely by volunteers. The day-to-day operations of the association were carried out by Stephen, Paula, Debbie, Jim, and me. We had volunteers across the country and around the world helping with mailing our publications and offering support to members of our community.

[00:00:30] It was always on my mind that every organization needs a succession plan to survive. Ten years ago, we hired Chitra Krishnan as our executive director. Today, our team has grown to eight talented and passionate people. This work requires competence, dedication, and experience. It also requires an abundance of passion, sensitivity, and caring.

[00:00:56] It is challenging work. Offering support and information to people who are going through the most difficult experiences in their lives is not for the week of heart. Over the years, I have experienced so many tears from the conversations I’ve had with people. I am grateful and proud of our staff and all our volunteers for the work that they do every single day. They do care deeply for our community.

[00:01:24] I am grateful for the support we have received from our community over the years. Providing critical education and support, training clinicians and researchers, and funding research into the causes, treatments, and possible cures for these disorders comes at a significant cost.
[00:01:45] You make this work possible. We need your help to continue this important work. There is so much that is left to do. If you can, please consider a year-end gift to SRNA. As a member of this wonderful community, I’ve always considered my financial support as an investment in Pauline’s future. Today, I give to this organization in Pauline’s memory and as an investment in your futures.

[00:02:17] Thank you for being a part of our community. From our SRNA family to yours, we wish you a wonderful holiday, and a new year filled with good health, happiness, and peace.

Here is a brief summary of our work from this past year.

  • Our Peer Connect Program expanded exponentially this year. Fifty people reached out to peer connect leaders 140 times. These connections match those with rare neuroimmune disorders with Peer Connect Leaders who can provide advice and support.
  • More than 700 people signed up for support group meetings. We also launched support groups for young adults, teenagers, and Europe-based members.
  • The annual Rare Neuroimmune Disorders Symposium was our first hybrid event, with participants attending online and in-person in Los Angeles. 264 community members and medical professionals attended the event and learned about the most up-to-date treatment strategies and research.
  • In Massachusetts and Arizona, 110 supporters attended Walk-Run-N-Rolls. These community-led events raised money and awareness for our important research.
  • After two years of connecting through Zoom, families traveled to Kentucky for the 2022 SRNA Quality of Life Family Camp, where they were able to relax, have fun, and meet others with a rare neuroimmune disorder.

None of this work gets done without your help. We are so grateful to all who have generously supported us and continue to do so over the years. Thank you.

International supporters: Please donate using this form

International supporters: Please donate using this form