A message from SRNA’s President

Dear Friend,

In 1994, Pauline was a totally healthy thirty-five-year-old. She was a kindergarten teacher. On July 31, 1994, she became paralyzed and lost all function below her waist. She was eventually diagnosed with transverse myelitis. Our experience was similar to all of those who got ADEM, TM, and NMOSD 30 years ago. You may have been getting AFM and MOGAD thirty years ago, but you sure weren’t being diagnosed with those disorders. We were totally lost. Doctors didn’t understand what happened to Pauline. There were no specialists. There was no research. There was no information. There was no support. Shortly after Pauline’s diagnosis, we found Deanne and Dick Gilmur and the world changed for what was to become our community.

We had no plan. As there was nothing, we knew that we needed to accomplish everything. For almost two decades, a totally volunteer organization began to do this work. Jim, Debbie and Michael, Paula and Mike, Dick and Deanne and Pauline and I devoted almost every waking hour (that we weren’t working or raising our families) to creating support and information. What an all-volunteer association was able to get done was remarkable. We published a newsletter and journal, we held symposia, and we created a wonderful website. We started a quality of life family camp. In 2008, we announced the Jim Lubin Fellowship.

I don’t often think about all of this… but when I do, the entire journey and where we have come from where we started is breathtaking. There are so many people, so many stories. There have been some amazing triumphs. One only has to look at the page’s worth of our medical professional network to appreciate just how far we’ve come. And now we have taken some responsibility for training physicians in our discipline through the fellowship.

We’ve also experienced so much suffering and so much sadness. When we began this work, no one told me that children were going to die, that people were going to commit suicide or that people would live their lives without finding any resolve for their pain or depression. So, my thoughts and feelings about all the good that has been done is always tempered by all the losses we’ve experienced. Over the years, Pauline and I shared the shedding of many tears.

Our volunteers have always formed the backbone of this organization. Jim, Debbie, Linda and I remain volunteers. Our wonderful board of directors, which include medical professionals from our community, are volunteers. We have exceptional volunteers from across the United States and from around the world. The passion and dedication of our volunteers has driven this organization from the beginning. Now, remarkably, and through the incredible generosity of Geoff Treglown (his memory should be for a blessing), we have a professional organization with an executive director and nine staff. Our staff does amazing work, and they are wonderful human beings.

Through an invitation by Dr. Chuck Levy, the first physician on our medical advisory board, our very small community came together in Columbus, Ohio in 1997. We quickly learned about the power of community. We’ve experienced this phenomenon every time we’ve come together… at symposia, support group meetings, fundraisers, family camps, and through calls and emails. As a small, rare disorders community, it isn’t easy to describe just how powerful it is to be with a group of people who understand your experience in a way that is impossible for others to comprehend.

Pauline and I were so incredibly proud of all of what was accomplished: the Jim Lubin Fellowship, the Quality of Life Family Camps, all our education opportunities, and a professional organization that ensured that the SRNA would have a future. Along the way, there has been nothing more important or impactful than the creation of this community. And by creation what I mean is that we created the vessel and all of you came to fill it. We have an extraordinary community that reminds us every day why we do this work. We have a community that regularly provides us with our dedicated volunteers. We have a community that supports our work. The power and purpose of our organization comes from our community.

This year marks thirty years of the Siegel Rare Neuroimmune Association. As we reflect on the past three decades of work, we recognize that SRNA is where we are today because of our community. In honor of our 30th anniversary, we are sharing six stories from members of our community who have shaped our collective journey. Their stories highlight the challenges, triumphs, and determination of those living with rare neuroimmune disorders. Through these stories, we celebrate the resilience, power, and togetherness that define who we are. We ask you to please watch their stories here.

At the heart of our mission lies a profound commitment to advancing the understanding and treatment of rare neuroimmune disorders through research and training. The James T. Lubin Fellowship, inaugurated in 2008, is pivotal in advancing the next generation of clinician-scientists dedicated to these challenging conditions. By providing up to two years of specialized clinical care and research training, this fellowship equips fellows with cutting-edge scientific tools and insights essential for pushing the boundaries of knowledge and improving outcomes in disorders such as ADEM, AFM, MOGAD, NMOSD, ON, and TM.

The significance of this fellowship extends beyond individual careers; it fuels the expansion of care and the establishment of new centers of excellence worldwide. The Rare Neuroimmune Disorders Symposium was held in Dallas this past October. The three-day program was focused on both education for our community and an opportunity for our researchers to share results of their work. The symposium served as a way for us to celebrate our achievements and spotlight the transformative work of our fellows.

Shortly after Pauline’s death in 2017, the SRNA Board established the Pauline H. Siegel Eclipse Fund for Research. As she did during her life, Pauline was a champion for research on these rare disorders. She was always hopeful that the work being done by our researchers would result in the improved quality of life for people in our community, and perhaps one day, a cure for these disorders. It is so fitting that in honor of her memory her research fund is serving as a catalyst to further this critical work.

From our 30 years of experience, the SRNA is acutely aware of the critical work that needs to be done. We have become experts in defining the work, from our education programs, national and international support networks, clinician-scientist training, the Quality of Life Family Camps to research. Our challenge has always been and continues to be raising the funds to support all of this work. As I’ve been noting for three decades, the competition for good cause dollars is fierce, and every cause is more than worthy. None of this work gets done without the support of our community. We come to you for this support because we have nowhere else to go; this is your cause and it isn’t shared by anyone else … no one else is even aware of these disorders, let alone know what they are or how they have impacted your life and the lives of your families. So, we come to you to make that difference.

Until the end of 2024, every donation made will be doubled up to $200,000. This matching program was made possible by the generous donations from SRNA’s board of directors and their families and friends. This is a unique opportunity to amplify your impact and help us to continue empowering individuals like Francisco, Ashley, Alan, Becca, Abby, and Amber.

We urge you to please help us, in any way you can, to help you. We are always grateful for all of the support from our community. Thank you!

While I’m reflecting on this journey, I’m going to be celebrating our community. I’m going to be thinking about all the people who came into mine and Pauline’s lives and became like family to us. I’m also going to be thinking about all of those that we’ve lost over the years. And I am going to be thinking about and missing my lovely Pauline. She was and will always be the reason I do this work. Her memory should be a blessing.

Sandy
President | SRNA