A Look Inside the 2022 RNDS

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“I have to thank the mix of my own transverse myelitis (TM) challenges, Covid isolation, and Zoom tech leading to me attending my first RNDS in 2021. My gratitude endures still. Over zoom I got to hear and learn about SRNA Research, Clinical and Support heroes, and engage with peers who share understanding, lived experience, and love. October’s Los Angeles RNDS 2022 is hybrid, both in person and zoom. I will not miss this special chance to engage in person with my TM world and the wider SRNA life and sanity-saving community. To our TM and rare neuroimmune California and western states community in particular, please sign up. Cindy and I hope to see you there at RNDS 2022! – Philip Rive, California Support Group Leader

Along with Philip, we would like to invite you to register for our 2022 Rare Neuroimmune Disorders Symposium (2022RNDS)! This three-day conference will take place October 7-9, 2022 in Los Angeles, California. 

This year is our very first hybrid event – you can attend in-person, virtually through our event app, or a combination of both. The 2022RNDS is an educational conference dedicated to the exchange of information regarding diagnosis, research, and treatment strategies. It is also a great opportunity to bring together the community of individuals diagnosed with rare neuroimmune disorders, families, caregivers, and the medical professionals who specialize in these disorders. 

Keep reading to learn more about the different topics covered, special sessions, and outstanding guest speakers who will be at the 2022RNDS. But first, learn from SRNA volunteers and staff why you should consider joining us for the event next week.

“After being diagnosed with TM, it was challenging to find out much about this rare disease. SRNA has helped me connect with folks who understand the challenges. That’s why I’m excited to attend this conference.  Together we are stronger.”

— Paul Garrett, Peer Connect Leader

“The in-person, real-time connections made between those diagnosed or who love and care for someone diagnosed, coming together with their “rare” peers, cannot be overstated. My most memorable RNDS moments have been greeting a community member in person for the first time. Whether it’s another parent, a clinician, or a longtime colleague, it offers an ability to come alongside one another in our truest form; to tangibly recognize the hope, humanity, and vulnerability in each person attending can be profound. It is rewarding to hear the voice of and share a hug with someone I’m so closely familiar with their story or work, yet have only corresponded via email or phone. Knowing that everyone in the room is there because of a commitment to improve the quality of life and, perhaps one day, eliminate these diagnoses from happening reminds me that our work is necessary and valuable. I don’t only attend and work for my family’s or child’s benefit who lives with one of these diagnoses. I attend and work for the other mom or dad struggling with what an AFM diagnosis means for the future, for the spouse who doesn’t want to feel like a burden since having ADEM, for the sibling feeling left behind because they don’t understand why NMOSD takes up so much of her family’s time; and for the friend who doesn’t know what to say to his best friend just diagnosed with TM. RNDS tangibly connects each of us and confirms that there is hope for the future.” 

-Rebecca Whitney, Associate Director, Programs and Community Support 

“I learn new things at every symposium and truly enjoy getting to see our community members, medical professionals, and staff all in one place. It’s great to catch up with people who have attended multiple symposia and also to get to know new folks.”

-Dr. GG deFiebre, Director of Research and Programs 

“I am looking forward to participating in the 2022 RNDS so I can learn more from the top medical professionals about the various rare neuroimmune disorders. We get to connect with others who have similar experiences and share ways we continue to adapt to live as independently as possible.”

— Janelle Healy, San Diego Support Group Leader

“I have heard that many value RNDS as a tremendous resource for members and caregivers. It is really powerful to see people connect.” 

-Angel Simpelo, Administrative and Creative Assistant

The symposium will include speakers on a variety of topics, including presentations on each of the rare neuroimmune disorders, talks on symptom management, updates from recent research studies, Q & A time with medical professionals, several breakout sessions, and more.

Part of the second day of the RNDS will include three concurrent tracks: one for those who have been recently diagnosed, one for those who were diagnosed more than two years ago, and one focused on pediatric care.

Some of the talks this year include: 

  • Panel Presentations on Diagnosis and Treatment of ADEM, AFM, MOGAS, NMOSD and TM  – Dr. Carlos Pardo (Johns Hopkins Medicine), Dr. Michael Levy (Massachusetts General Hospital), Dr. Benjamin Greenberg (UT Southwestern Medical Center), Dr. Eoin P. Flanagan (Mayo Clinic), and Dr. Grace Gombolay (Childrens Healthcare of Atlanta) – (Friday, October 7)
  • “Management of Neuropathic Pain” –Dr. Ram Narayan, Barrow Neurological Institute – (Saturday, October 8)
  • “Transitioning From Hospital to Home”  –Dr. Janet Dean, Kennedy Krieger Institute (Saturday, October 8)
  • “Pediatric Mental Health” –Dr. Camille Wilson, Nationwide Children’s Hospital (In person only – Saturday, October 8) 
  • “Impact of Rare Neuroimmune Disorders on Cognition, Depression and Quality of Life” –Dr. Lana Harder, University of Texas Southwestern and Children’s Medical Center Dallas (Sunday, October 9) 
  • “Bladder, Bowel, and Sexual Dysfunction” –Dr. Philippines Cabahug, Kennedy Krieger Institute (Sunday, October 9)   

You can find more information about the online conference and how to register on the 2022RNDS page. 

We are very excited to bring our community together for this educational experience, and we hope you will join us. We remain committed to hosting a conference that empowers our rare disease community to become better advocates for themselves and provides valuable resources to keep learning about these rare conditions.

We don’t want cost to be an inhibition to your attendance, so please email us directly if you would like a fee-waived ticket or with any other questions. Please feel free to contact us at [email protected].