Posted by: The Sumaira Foundation in NMO, Uncategorized, Voices of NMO
My NMO journey started just a few weeks after having my first baby girl in August 2020. Being a first time mom, I had no idea what postpartum should look like therefore, some of my symptoms in the moment were overlooked and hard to tell what was actually happening! About 5 weeks after having my […]
Read MorePosted by: The Sumaira Foundation in NMO, Professional, TM, Voices of NMO
Maureen is a nurse. She worked in neurocritical care at Johns Hopkins Hospital for many years before she had ever heard of NMO. But in 2007, shortly after Dr. Benjamin Greenberg joined the faculty at Johns Hopkins, he recruited her to work with him in neuroimmunology. It was there that she first came into contact […]
Read MorePosted by: The Sumaira Foundation in News & Announcements
February 18, 2020 — SRNA is proud to collaborate with The Sumaira Foundation for NMO, Connor B. Judge Foundation, and The Guthy-Jackson Charitable Foundation to launch ABCs of NMOSD, a 10-part education podcast series to share knowledge about neuromyelitis optica spectrum disorder (NMOSD) premiering on February 24, 2020 at 12:OO PM EST. This education series is […]
Read MorePosted by: The Sumaira Foundation in Caregiver, MOG, ON, Voices of NMO
Virginia was only 10 when, while checking the mail one day in April, she noticed a grayness in her vision, “like leaves creeping up from the bottom of my eye.” The strange phenomenon went away in a few minutes. Her mother, Kimberlie, attributed the problem to Virginia’s allergies. But when the vision problem returned, they […]
Read MorePosted by: The Sumaira Foundation in NMO, Patient, TM, Voices of NMO
I was 33 years old in 1993, when I experienced a sudden attack of optic neuritis, an inflammation that damages the optic nerve causing vision loss. A small black dot, obstructing the vision in my left eye turned into complete blindness in that eye in a matter of days. While admitted to Upstate University Hospital […]
Read MorePosted by: The Sumaira Foundation in News & Announcements
November 13, 2019 – The Sumaira Foundation for NMO (TSF) and The MOG Project announced their partnership on November 13, 2019 in their shared mission to raise awareness for myelin oligodendrocyte glycoprotein antibody-associated disease (MOG-AD). Since its nascence, TSF has focused on raising awareness and funds for neuromyelitis optica. In mid 2019, the organization shared […]
Read MorePosted by: The Sumaira Foundation in News & Announcements
The NMO Clinic and Research Laboratory at Massachusetts General Hospital November 7, 2019 – Three board members of The Sumaira Foundation for NMO, Dr. Michael Levy, Dr. Marcelo Matiello, and Gabriela Romanow, are formally announcing the creation of The NMO Clinic and Research Laboratory at Massachusetts General Hospital (MGH). The Clinic is founded on three […]
Read MorePosted by: The Sumaira Foundation in MOG, Patient, Voices of NMO
Now that I have been diagnosed with Myelin Oligodendrocyte Glycoprotein Antibody-Associated disease, or MOG-Ab disease, I have met others who are afflicted and have listened to their stories. They all start similarly, with an acute attack, out of the blue, and always marking the start of an unexpected turn in health. My story is different. […]
Read MorePosted by: The Sumaira Foundation in NMO, Patient, Voices of NMO
Jamie was diagnosed with Non-Hodgkins Lymphoma at the age of 35. Her condition was such that she didn’t need treatment, just monitoring. She was even healthy enough to have a second child. After the birth, though, she was put on Rituximab for the lymphoma, once a week for four weeks. Two years later, one night […]
Read MorePosted by: The Sumaira Foundation in Events
On September 21, 2018, TSF hosted a dinner for NMO specialists + champions in Boston, MA. We engaged in great conversation about: the ongoing development of the disease ideas for future research projects current therapies and practices ways to collaborate to impact the community Special guests | Dr. Anu Jacob from The Walton Centre NHS Foundation […]
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