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August 14, 2023 – The Sumaira Foundation (TSF) is pleased to welcome Leda Bresnov to our leadership team as International Ambassador Liaison. As of August 2023, the Foundation is proud to call 60 patients, caregivers and clinicians from 5 continents TSF Ambassadors.
Before getting diagnosed with NMOSD, Leda worked as a laboratory planner in a large life sciences company. In her role, she was responsible for daily operations, staff coordination and continuous analysis to maintain efficiencies and ensure smooth workflows in the lab.
“In 2018, I was diagnosed with neuromyelitis optica which forced me to face countless challenges including losing my beloved job. I felt lost, scared, angry and unsure of how to pick up the pieces and move forward. In 2022, when I was feeling the most vulnerable I had ever felt in my life, I discovered The Sumaira Foundation. In such a short period of time, I received incredible support from this global community where I not only found hope but found a new purpose in my life,” recalls Leda.
Leda believes that self-advocacy and patient empowerment are key ingredients to helping patients, caregivers and their family members move forward with their new circumstances while also achieving better health outcomes. Since joining the Foundation as the Ambassador of Denmark in spring 2022, Leda has consistently and proactively leveraged her social media platforms to spread awareness, knowledge, education, information, resources, opportunities and support to the NMOSD/MOGAD communities around the world. Her newfound passion for advocacy has also given her the strength to deal with her own journey with NMOSD.
“When I became sick and subsequently lost my job, I didn’t believe that I would feel passionate about something else ever again until I got involved with TSF. I found my voice, my purpose and stand for everything the Foundation has done and aspires to do.”
In 2022, Leda helped the Foundation launch and facilitate the first-ever virtual support group program dedicated to NMOSD, MOGAD and other rare neuroimmune disorders. Since joining TSF, Leda has been a patient member of EFNA’s European NMOSD Guideline Task Force and featured in Horizon Therapeutics’ European NMO Awareness Month 2023 campaign. Leda is also currently enrolled in EUPATI’s Patient Expert Training program and expected to graduate in 2024. Originally from Brazil, Leda has been living in Denmark for over 30 years and is fluent in Portuguese, Danish and English.
TSF is proud to be a patient-led/patient-powered organization. To apply for the TSF Ambassador Program, visit https://www.sumairafoundation.org/community/tsf-ambassadors/.