BOSTON, Aug. 4, 2022 /PRNewswire/ -- The Sumaira Foundation (TSF), a nonprofit organization focused on the rare neuroimmune diseases of NMOSD and MOGAD,* is pleased to announce that it is joining forces with the Connor B. Judge Foundation (CBJF), a nonprofit started in 2014 to raise awareness and support research for NMOSD and other related autoimmune disorders.
TSF acquiring CBJF to expand organizational reach and impact for the rare diseases of NMOSD and MOGAD
As of August 2022, TSF will be taking over responsibility for all CBJF programmatic and research activities and is excited to welcome the CBJF leadership team to the Foundation's Stakeholder Advisory Committee.
"CBJF and TSF share a long history of mutual collaboration and support, so we are delighted to further strengthen our ties and impact by merging our two organizations and building on the unique strengths of each," said Sumaira Ahmed, founder and executive director of TSF. "Especially in the fragmented landscape of rare disease, it's essential that we maintain momentum and increase our organizational capacity by coming together," she added.
"CBJF and TSF have been committed partners on a mission to help empower and better the NMOSD/MOGAD world for the past three years. We are excited to fully integrate CBJF into TSF to play a stronger combined role in the NMOSD/MOGAD community. We know that our education, community and research initiatives will not only be preserved but enhanced and expanded under the leadership of TSF," said Chelsey Judge, leader of CBJF.
Key CBJF initiatives TSF is excited to continue and expand include:
Patient days at leading academic medical centers (e.g., Cleveland Clinic)
Statewide/regional Rare Disease Days & events
Research funding for leading NMOSD clinicians and laboratories
NMOSD-focused content featuring key opinion leaders, patients and caregivers (e.g., Demystifying NMO podcast)
"As two advocacy organizations founded by patients, and given the overlaps in our focus within the rare disease space, it became quite apparent over time that we could collectively accomplish even more as one organization," Ahmed added. "We hope our announcement will serve as an example and template for additional rare disease partnerships and combinations in the US and internationally." TSF and CBJF will be merging their patient, caregiver and clinician communities in their mutual quest to raise awareness, build communities, advocate for patients and advance research globally.
TSF is a 501(c)(3) organization dedicated to raising global awareness of NMOSD and MOGAD, creating communities of support for patients and their caregivers, leading patient advocacy efforts, and supporting research to develop better therapies.
CBJF is a 501(c)(3) nonprofit organization which raises awareness and funds research for NMOSD and related autoimmune diseases.
For more information or to support TSF and CBJF initiatives, please visit the TSF website at: www.sumairafoundation.org.
*NMOSD stands for neuromyelitis optica spectrum disorder, a rare autoimmune neurological condition in which the immune system attacks cells in the central nervous system (CNS). Common symptoms include vision loss, color vision deficiency, paralysis, paraparesis, weakness, numbness, spasticity, vomiting, hiccups, and bladder/bowel dysfunction.
MOGAD stands for myelin oligodendrocyte glycoprotein antibody-associated disorder, a rare neuroimmune condition that targets the MOG protein which is located on the surface of myelin sheaths in the central nervous system. Common symptoms include vision loss, color vision deficiency, paralysis, paraparesis, weakness, numbness, spasticity, vomiting, hiccups, seizures, and bladder/bowel dysfunction.
About The Sumaira Foundation
The Sumaira Foundation is a 501(c)(3) organization dedicated to generating global awareness of neuromyelitis optica spectrum disorder (NMOSD) and myelin oligodendrocyte glycoprotein antibody-associated disease (MOGAD). Founded in 2014 by NMO patient, Sumaira Ahmed, TSF is dedicated to generating global awareness for NMOSD/MOGAD, creating a community of support, advocating on behalf of patients and their caregivers, and supporting clinical research. The Foundation also works to foster real connections between people affected by NMOSD and MOGAD through its international Ambassador Program. To read patient stories and to learn more about TSF, please visit www.sumairafoundation.org.
About The Connor B. Judge Foundation
The Judge family became a part of the NMOSD/MOGAD community in 2014 in dramatic fashion. After weeks of unusual neurological symptoms, Connor, son to Pam and Harvey and brother to Chelsey, woke up one morning blind and paralyzed, having to crawl to his car to be transported to the emergency room. The mystery turned out to be NMOSD, with Connor receiving swift diagnosis and treatment at the Cleveland Clinic, fortunately recovering his eyesight and ability to walk over time. To help Connor and others like him, his family created the Connor B. Judge Foundation (CBJF), a family-based nonprofit with a mission to raise awareness and fund research for NMOSD and other severe autoimmune diseases. Over the past eight years, the Judge family has raised funding, supported multiple research grants and collaborated with like-minded organizations and passionate individuals to foster connection and education for the entire NMOSD/MOGAD community.
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SOURCE The Sumaira Foundation