For this week’s Charitable Choices feature, we spoke with Brenda Kelsey, President of Myasthenia Gravis Association of BC (MGABC), to learn more about who they are, the problem they are trying to solve and how we can help.
Describe your charity/non-profit in a few sentences:
Myasthenia Gravis is a rare neuromuscular auto-immune disease. The characteristics are extreme fatigue, droopy eyelids, difficulty chewing and swallowing, voice changes and muscle weakness in the arms and legs. As these symptoms are fluctuating and not every person presents with all these symptoms, Myasthenia is difficult to diagnose.
If recognized and treated early, most MG patients can live a normal life with medication and treatments. The Myasthenia Gravis Association offers education, support and advocacy for Myasthenia patients. We foster and support Myasthenia Gravis research at the University of BC. More recently, the MGABC has supported a fellowship for a neurologist to study Myasthenia Gravis at Vancouver General Hospital Neuromuscular Diseases Unit.
What problem does it aim to solve?
The issues we aim to solve are Education about MG for patients, physicians and the general public. We foster research and support physicians seeking more information or education about Myasthenia.
When did you start/join it?
I joined the Myasthenia Gravis Association in 1994 after being diagnosed with MG in 1993.
What made you want to get involved?
I am a retired nurse and thought I would be a help to the association.
What was the situation like when you started?
The association when I joined had been incorporated as a non-profit in 1958. There were 3 people on an executive committee, mailing literature and a typed 2-page newsletter twice a year. Support meetings were held every few months. The financial situation was tenuous, sometimes unable to pay rent on a small office.
In order to distance ourselves from the non-profit group, we were renting from we needed to establish our own Board Of Directors which was done. I was asked to form a BOD and was elected President.
How has it changed since?
The MGABC is now financially viable, holds large support group meetings every 6 months, and sends out a 12-page printed newsletter twice a year. We work closely with the neurologists and the Neuromuscular Diseases Unit and assist in day-long seminars for patients with Myasthenia Gravis.
What more needs to be done?
We continue to counsel, educate, and advocate for people with MG as well as support MG research.
The biggest issue we need to overcome is the education of family physicians and Emergency room doctors to recognize MG symptoms. As the disease is rare and the fluctuating symptoms can mimic other conditions, many Myasthenics are not diagnosed for years or at all.
How can our readers help?
Guardian readers can help by learning about Myasthenia Gravis. Can visit our website, or contact us via mail: firstname.lastname@example.org.
Do you have any events coming up?
The MGABC Annual General Meeting was on May 15th, 2022. The next meeting will be in October 2022.
PAY IT FORWARD: What is an awesome local charity/non-profit that you love?
The local charity that we love is the Parkinson’s Society.