Home » rare disease
Tag: rare disease
Posted by:
The Sumaira Foundation
in NMO, Patient, Voices of NMO
While I was pregnant, I began having blurred vision. I went to see ophthalmologists, opticians, and general practitioners, but they kept saying nothing was wrong. I was sent to see a neurologist at a public hospital, but there were long wait times. Knowing I needed answers, I chose to go to a private hospital. The […]
Read
More
Posted by:
The Sumaira Foundation
in Events, News & Announcements
You’re invited to attend an exclusive summer event to Celebrate 8 Years of TSF Thursday, July 28 @ at 6:30 PM The Envoy Hotel Lookout Rooftop & Bar (70 Sleeper St, Boston, MA 02210, overlooking Boston’s financial district) With your support, over the past 8 years the foundation has: Awarded $500,000+ to NMO/MOG-AD research Shared 130 Voices of NMO/MOG […]
Read
More
Posted by:
The Sumaira Foundation
in NMO, Patient, Voices of NMO
Hi, my name is Noelani. I am 30 years old, was born and raised in Hawaii but currently reside in Nevada! Looking back, there were signs throughout my childhood of NMO, bowel/urinary incontinence, spurts of tingles, and needles in my extremities. In my early teens, I had episodes of numbness in my left arm and […]
Read
More
Posted by:
The Sumaira Foundation
in Blog Posts, News & Announcements
WASHINGTON, May 26, 2022—The PAN Foundation and The Sumaira Foundation (TSF) today announced they are launching a new partnership to help people living with neuromyelitis optica spectrum disorder (NMOSD), providing up to $9,600 per year in financial assistance and support services for patients and their caregivers or loved ones. Neuromyelitis optica spectrum disorder (NMOSD), also […]
Read
More
Posted by:
The Sumaira Foundation
in NMO, Voices of NMO
It started innocuously. In 2008 we moved to Ottawa with my employer for my career in pest control. On a gray, cloudy but humid day, I was out removing a wasp nest for a client. She pointed to the nest hanging off a tree branch, about 10 feet away, and I thought to myself, “not […]
Read
More
Posted by:
The Sumaira Foundation
in NMO, Patient, Voices of NMO
In August 2019, while at work, I began to notice a change in my right eye. I thought it was the contacts I was wearing, so I removed them. Still, my vision felt strange. I realized that I was going blind and needed to go to an eye doctor. The eye doctor mentioned multiple sclerosis […]
Read
More
Posted by:
The Sumaira Foundation
in MOG, Patient, Voices of NMO
Clean and clear were my glasses but still I had trouble seeing clearly with my right eye. On Easter Monday in 2019, my vision deteriorated and by the end of the week, I was admitted to the hospital. I was feeling sick with almost no vision left in both eyes, experiencing painful eye movements and […]
Read
More
Posted by:
The Sumaira Foundation
in NMO, Patient, Voices of NMO
A native Portuguese speaker and resident of Denmark, Leda wrote her story in English, Portuguese, and Danish. Please scroll down to read Leda’s story in Portuguese and/or Danish. In 2018 my life was peaking. My family was doing well. I had the most amazing job and spent my spare time teaching Zumba classes, boxing, and […]
Read
More
Posted by:
The Sumaira Foundation
in News & Announcements
March 10, 2022 – The Sumaira Foundation (TSF) is pleased to announce the launch of “Imagine My Life With NMO,” a video series showcasing the experiences of people living with neuromyelitis optica (NMO) around the world. The series follows Sumaira Ahmed, TSF founder, as she interviews patients, their loved ones and doctors to understand the […]
Read
More
Posted by:
The Sumaira Foundation
in NMO, Patient, Voices of NMO
Part I and II of this story were originally published in 2015 by NMO Stories, presented by The Guthy-Jackson Foundation and the Connor B. Judge Foundation. It was shared again on November 14th, 2019 in In Their Own Words by SRNA (Siegel Rare Neuroimmune Association). Part I Sometimes I think I could write a book about my story with NMO… […]
Read
More