A Recap of Rare Disease Day 2024

Every year, Rare Disease Day serves as a day to take action for the rights and opportunities of individuals living with rare diseases. This year, Rare Disease Day was recognized on February 29, the rarest day of the year. This is an opportunity to raise awareness about uncommon medical conditions, advocate for improved support and research, and foster solidarity among individuals and families affected by rare diseases worldwide. 

On February 29, 2024, we celebrated Rare Disease Day with a special event for the rare neuroimmune disorders community. Over 80 attendees from around the world participated from Canada, the United States, Great Britain, Belgium, Greece, and the Netherlands. 

The event featured insightful panel discussions, a video announcing SRNA’s 30th Anniversary, creative storytelling sessions, informative previews, and diverse sessions covering topics such as fundraising, research, community building, and raising awareness for rare neuroimmune disorders. Below are some highlights from the event.  

 

Journey Together: Reflecting and Shaping the Future of Rare Neuroimmune Disorders 

The event began with a roundtable focused on the collective experiences within our community. Community members Andrew Jopson, John Filchak, Donna Sharp, and Kyra Mazer shared personal stories, key lessons learned, and the significant support systems that have made a difference since their diagnosis.  

“Here I am, a year down the line and I know the reason I have recovered as well as I have is because of the speed of diagnosis and treatment. I also know there are many, many people in both the states and the UK that don’t get that.” shared Donna.  

Moderating the conversation was SRNA’s Lydia Dubose, who ended the session by asking if the speakers had any final words or advice to share with the audience. 

“You got to keep going forward,” shared John. “In some ways, it’s an odd thing to say, but I’m a little bit more at ease with myself. I’m a lot more optimistic going forward than I thought I was going to be when this first came out. Initially, you could say it was devastating, but I think I’ve moved on from that state.”

Find out more about Andrew, Donna, Kyra, and John’s journeys with rare neuroimmune disorders here.  

 

Founders’ Perspectives: A Conversation with SRNA Leaders 

This roundtable featured SRNA President Sandy Siegel, SRNA Vice President Linda Malecky, SRNA Executive Director Chitra Krishnan, Dr. Doug Kerr of Atlas Venture, and Drs. Cindy Wang and Benjamin Greenberg of UT Southwestern Medical Center. The founders reflected on the organization’s humble beginnings, growth, and impact over the last 30 years. Sandy started the session by sharing more about SRNA’s beginning and journey to becoming an established organization. 

“Our first newsletter went out in 1997, and we also sent out a survey to better understand transverse myelitis. Eight hundred people responded, and we presented the results in a symposium in 2004. We did all of the mailings ourselves, gathering all of our family and friends to stuff envelopes. My parents put labels on the envelopes, and we filled my garage with post office sacks. That’s the way our organization worked for a long time.”  

In 1999, SRNA’s first symposium was held in Seattle, Washington. There, Sandy first met Dr. Doug Kerr, who would go on to start the first TM Center alongside Dr. Carlos Pardo, Dr. David Arani, and Chitra Krishnan.  

“We knew we needed to begin gathering data on these patients. We needed to know their experience, how weak they were, what treatments they received, and how they recovered. We set up this database that allowed us to collect clinical data, MRI images, blood, plasma, and spinal fluid. We looked at family history, and it paved the way for really understanding this spectrum of rare neurological disorders,” shared Dr. Kerr.   

To continue to learn more about SRNA over the past 30 years, you can find the full conversation here.   

 

30 Years of SRNA 

We also officially launched our year-long, 30th anniversary campaign during the event. A special video was shared reflecting on our shared achievements and looking ahead to a future of continued collaboration and community. You can watch the full video here.