She knows what it’s like to live in uncertainty and to feel very alone in navigating the world of MOG. Rebecca (Becca) Salky has had MOG since she was 4 years old, although she didn’t get the official diagnosis until she was 22. She is a strong advocate for little children, particularly those who have underlying health conditions. Jenny joined the team to use her expertise in Mathematics to collect, organize and analyze data, her creativity and research skills to collaborate on projects and expand our social media networks, and globally connect neurologists and researchers around the world. Jen is a Primary school teacher in Sydney, Australia who has been educating kids since 2018. In August 2019, she suffered a further episode of (UON) and a relapsing MOGAD diagnosis was given to her in March, 2020 when both her CSF and serum returned positive for the MOG antibody and her relapses continued. Jen vowed that if her vision returned, she would pursue her dream as a Primary school teacher in which it did. In November 2014, Jenny had her first episode of simultaneous Bilateral Optic Neuritis (BON) which left her blind and hospitalized with a ‘suspected autoimmune aetiology’ cause for her diagnosis from a clinically and radiologically isolated presentation. Pittock’s research to find a cure, Jim has set up his own foundation with Mayo, which can be found on their website. Today, he uses no preventive treatment and Jim’s titer level was and still is 1:1000. Jim is more than happy to be a guinea pig for Dr. Pittock, the head of neurology at Mayo, and now refers to him as “My God and Doctor” (in partnership with his local neurologist). He was able to get an appointment with Dr. Three months later, his blood work was sent to the Mayo Clinic by his local neurologist and tested positive for MOG, which subsequently ruled out MS. A year later, he developed Optic Neuritis (ON) and was officially diagnosed with MS for which he started treatment. These remaining issues, especially those affecting memory, caused him to be permanently disabled and say goodbye to his career. Eventually, he recovered his ability to walk, but was left with memory issues and the other side effects. This episode affected his ability to walk, caused memory issues and other various side effects. In 2016, at the peak of a second career, he was struck with Transverse Myelitis (TM) and, at the time, what doctors thought were two Multiple Sclerosis (MS) lesions (he now has six lesions). Jim was a publicist in Los Angeles for 17 years. They currently live in the San Francisco Bay Area located in northern California. Her husband James is passionate about advocacy in the caregiver role. As an Executive Board Member for The MOG Project, she assists in providing educational materials, conducts support groups and connects with others through social media and email inquiries. She enjoys helping those who are newly blind find resources for gaining their independence. Her passion is to educate, empower, promote advocacy and support others dealing with this rare condition. They have a beautiful yellow lab named Indy and he is Andrea’s new guide dog since October 2021. They have a sweet Pekingese by the name of Bubba and a loving retired guide dog named Newcastle. She has a very loving and supportive husband named James. She often suffers from daily pain all over her body and continually fights off fatigue. MOG-AD has also affected her hearing and bladder. It took 2 years for her to find the right diagnosis and due to a lack of aggressive treatment, she lost the sight in both of her eyes. In early 2020, The MOG Project became a non-profit organization on its own, partnering with the SRNA and the Sumaira Foundation to ensure strength in achieving their aligned missions.Īndrea Mitchell has had relapsing form of MOG-AD since October 2011. With the support of the SRNA, they helped improve information distribution through social media, podcasts, support groups and walk events. Since then, the group has expanded from coast-to-coast and across the Atlantic with more members of the MOGAD community willing to devote their time and effort to The MOG Project to make sure that MOGAD patients have the latest information on disease research, the best doctors and the best course of treatment. The SRNA took them under their wing and allowed them to launch MOG disease advocacy as a new addition to their spectrum of rare neuroimmune diseases that they support. Michael Levy, Julia’s neurologist and, at the time, Assistant Professor of Neurology at Johns Hopkins, suggested that they join The Transverse Myelitis Association (TMA), now called the Siegel Rare Neuroimmune Association (SRNA) ( ) as the disease should be included in their spectrum of neuroimmune diseases.
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