The “Community Spotlight” edition of the “Ask the Expert” podcast series shares the stories of our community members. In this episode, Alexandra Goulimi and Angela Jackson joined Lydia Dubose of SRNA share their backgrounds and how they got involved with volunteering for SRNA [00:01:43]. Alexandra and Angela discussed their experiences with rare neuroimmune disorders and the support they found through SRNA's programs [00:13:41]. They also shared what they hope to see in the future related to rare neuroimmune disorders and SRNA [00:22:53] and offered advice for anyone who might be interested in getting involved [00:30:51].
Alexandra Goulimi was born in 1969 and lived in Germany until she moved to Greece in 2011. She has a background in Human Resources Development and holds a master’s degree in Sociology and a PhD in Communications. In 2009 Alexandra met the Human Design System and has been experimenting since then with making decisions guided by her body’s intelligence. In 2017 Alexandra was diagnosed with NMOSD. It was challenging to meet the initial shock and deal with the symptoms. She has navigated her NMO-journey guided in her decisions by her intuitive response. Alexandra’s experience of NMO has led her to a profound understanding and a deeper love of herself and life.
Angela Jackson has been a member of a book club for 20 years. She is also a published author. Angela was a VP of Account Management working for a software company responsible for Customer Success. On February 27, 2019, she woke up with a numb left thigh. 12 hours later she was paralyzed from the waist down, diagnosed with idiopathic transverse myelitis, and hospitalized. Her lifestyle changed: acceptance of the diagnosis, therapy, limitations, working from home, depending on others... Moving forward with a positive outlook on life, Angela joined SRNA, serving as a Peer Connect Leader and hosting the first Houston, Texas Walk-Run-N-Roll. Angela has an awesome family. She is thankful for loving and supportive family and friends.
1208. MOGcast - Understanding Cortical Encephalitis
1207. MOGcast - The Latest in Treatments from an Adult and Pediatric Perspective
1206. Community Spotlight - Voices of SRNA Volunteers | Part 2
1204. Community Spotlight - Ilona Williams
1203. Community Spotlight - Rick Telander
1202. Increased Intracranial Pressure in Pediatric MOG Antibody Disease
1201. A Conversation about Grief and Loss with Lisa McDaniel
1115. A Conversation about Grief and Loss with Chris Lopardi
1114. Neurosarcoidosis and Rare Neuroimmune Disorders
1113. Acute Treatments and Rare Neuroimmune Disorders
1112. Social Determinants of Health in Rare Neuroimmune Disorders
1111. Dr. Anderson's Fellowship Research
1110. Can Do MS: Take Charge and Coaching Series
1109. Disability and Rare Neuroimmune Disorders Part 2: Accessibility and Disability Pride
1108. Disability and Rare Neuroimmune Disorders Part 1
1107. Update: Study to Investigate the Safety of the Transplantation of Human Glial Restricted Progenitor Cells into Patients with Transverse Myelitis
1106. CosMOG - Clinical Trial for MOGAD Treatment
1105. What to Expect Living with NMOSD and MOGAD Long-Term
1104. Community Spotlight - Paul Turner
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