This past weekend, we had the immense pleasure of attending the Siegel Rare NeuroimmuneA term that refers to the components of the immune system that acts in and affects the central nervous system. 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 neuroimmuneA term that refers to the components of the immune system that acts in and affects the central nervous system. 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.
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 MOGADOften referred to as MOGAD, Anti-MOG, MOG Ab+, MOG Antibody Disease, MOG Associated Antibody Disease, MOG positive disease patients. We also had the pleasure of being greeted by Lena Loquellao, one of the organizers of the event who suffered from TMA disorder caused by inflammation of the spinal cord. It is characterized by symptoms and signs of neurologic dysfunction in motor and sensory tracts on both sides of the spinal cord. The involvement of motor and sensory control pathways frequently produce altered sensation, weakness and sometimes urinary or bowel dysfunction. In relation to MOGAD, the inflammation is caused by the MOG Antibody., 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 MOGA type of protein involved in cell adhesion. Present throughout myelin sheaths. Swag.
We soon met up with one of our favorite MOGADOften referred to as MOGAD, Anti-MOG, MOG Ab+, MOG Antibody Disease, MOG Associated Antibody Disease, MOG positive disease 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 MOGADOften referred to as MOGAD, Anti-MOG, MOG Ab+, MOG Antibody Disease, MOG Associated Antibody Disease, MOG positive disease , 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.
We also met others who had TMA disorder caused by inflammation of the spinal cord. It is characterized by symptoms and signs of neurologic dysfunction in motor and sensory tracts on both sides of the spinal cord. The involvement of motor and sensory control pathways frequently produce altered sensation, weakness and sometimes urinary or bowel dysfunction. In relation to MOGAD, the inflammation is caused by the MOG Antibody. and wondered if they should be tested for the MOG AntibodyA protective protein produced by your immune system that attaches to antigens (foreign substances), such as bacteria and toxins, and removes them from your body. In myelin oligodendrocyte glycoproten antibody disease (MOGAD), the body incorrectly produces an antibody that targets myelin oligodendrocyte glycoprotein, a component of the myelin sheath in the central nervous system.. There were so many people there with similar neuroimmuneA term that refers to the components of the immune system that acts in and affects the central nervous system. diseases: ADEMAn initial and brief autoimmune attack that causes widespread inflammation and damage to the brain, spinal cord, and optic nerve, typically in children. This initial attack establishes the basis for diagnosis. The MOG antibody is detectable in a percentage of Acute Disseminated Encephalomyelitis (ADEM) patients., TMA disorder caused by inflammation of the spinal cord. It is characterized by symptoms and signs of neurologic dysfunction in motor and sensory tracts on both sides of the spinal cord. The involvement of motor and sensory control pathways frequently produce altered sensation, weakness and sometimes urinary or bowel dysfunction. In relation to MOGAD, the inflammation is caused by the MOG Antibody. 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 MOGADOften referred to as MOGAD, Anti-MOG, MOG Ab+, MOG Antibody Disease, MOG Associated Antibody Disease, MOG positive disease patents were entering her clinic. We exchanged information and hope to connect with her soon. Meeting trained physicians familiar with MOGADOften referred to as MOGAD, Anti-MOG, MOG Ab+, MOG Antibody Disease, MOG Associated Antibody Disease, MOG positive disease 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
