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The MOG Project Attends the Siegel Rare Neuroimmune Association Walk-Run-N-Roll in Long Beach, California

Jim Broutman, Caitlin Jo Burke and Julia Lefelar in front of The MOG Project Booth, full of swag, at the SRNA WRNR in Long Beach California.

This past weekend, we had the immense pleasure of attending the Siegel Rare Neuroimmune Association (SRNA) Walk-Run-N-Roll where we experienced the Southern California sun, an El Nino wind and a group of people with various rare neuroimmune conditions who gathered in solidarity in their resolve to meet new friends with a common purpose of supporting each other and bringing awareness to their disease.

The SRNA Booth at the Long Beach, California Walk Run and Roll.
Skye Corken from SRNA speaking at the Long Beach SRNA WRNR.

I was so excited to meet up with our Chief Media Officer, Jim Broutman, who is an amazing force in our organization! He is so compassionate to others, passionate about our mission and a master at networking, not to mention a lot of fun! We arrived at the park early, set up our booth and were immediately greeted by the organizers of the event, including Sky Corken from SRNA who is so kind and amazingly supportive of our organization and what we are trying to accomplish for MOGAD patients. We also had the pleasure of being greeted by Lena Loquellao, one of the organizers of the event who suffered from TM, but has overcome so much to get back to walking. We couldn’t have felt more welcome as we set up our booth, offering our patient brochures and some pretty nice MOG Swag.

We soon met up with one of our favorite MOGAD patients, Caitlin, who brought her boyfriend with her.  We had not seen her in a while and took some time to talk about her horrific experience with MOGAD, and it was good to see that despite having lingering after-effects, she was stable and well. She told us that she was helping others who contacted her by sharing what she had learned along the way, including our resources. We were so happy to hear that they were helpful as this drives us to continue to do better.  After all, education is key in managing this disease.

Julia and Caitlin at The MOG Project Booth, as part of the SRNA WRNR in Long Beach, California.
Jim and Caitlin at The MOG Project Booth at the Long Beach California SRNA WRNR.

We also met others who had TM and wondered if they should be tested for the MOG Antibody. There were so many people there with similar neuroimmune diseases: ADEM, TM and AFM. They all were so happy to share stories.

Our booth was approached by Dr. Paula Barraras, who had originally trained at Johns Hopkins and now started a Neuroimmunology Clinic only one month ago at Cedar Sinai.  She was excited to see that we had so many resources as MOGAD patents were entering her clinic.  We exchanged information and hope to connect with her soon.  Meeting trained physicians familiar with MOGAD is important as we often need to refer patients to a doctor who can manage this new and rare disorder that can often be tricky to diagnose and treat.

Dr. Barraras spoke about her work and answered patient questions, then Skye and Lena spoke. Once they were done, the ceremonial walk began! It was not a long walk, but it certainly was fun as the participants moved through the short route with joy, thankful for their ability to do so. Afterwards, a group picture was taken and closing remarks were made. Numbers were exchanged and promises were made to return next year.

We were struck by the comradery of participants as well as the compassion and supportive vibe of the event. This is so consistent with all of the other SRNA WRNR events and we look forward to supporting our friends at the SRNA in the future.  We highly recommend that you attend one yourself if you can, or better yet, contact them to start one of your own!

By Julia Lefelar

Co-founder. & Executive Director