Myasthenia Gravis Foundation of America – Certstaffix Training’s Charitable Partners

Posted on 08/16/2020 by Niko Venev

In its efforts of helping local communities, Certstaffix Training has partnered with different organizations that make a difference. For our fourth “Certstaffix Training’s Charitable Partners” blog post, we would like to introduce you to “Myasthenia Gravis Foundation of America.”

Here is a short interview with the MG Walk Team Coordinator – Carline Czaja

What is the mission/goal of your organization?

The Myasthenia Gravis Foundation of America (MGFA) is the only national volunteer health agency in the United States dedicated solely to the fight against myasthenia gravis. MGFA serves patients, their families and caregivers gravis through research, education, community programs, and advocacy.

Myasthenia gravis (pronounced My-as-theen-ee-a Grav-us) comes from the Greek and Latin words meaning “grave muscular weakness.” The most common form of MG is a chronic autoimmune neuromuscular disorder that is characterized by fluctuating weakness of the voluntary muscle groups.

What audience or population does your organization service or benefit?

The prevalence of MG in the United States is estimated to be about 20/100,000 population. However, MG is probably underdiagnosed, and the prevalence may be higher. Myasthenia gravis occurs in all races, both genders, and at any age. MG is not thought to be directly inherited nor is it contagious. It does occasionally occur in more than one member of the same family.

What is the history of your organization? How did it start?

Jane Ellsworth founded the Myasthenia Gravis Foundation of America, Inc. in 1952, when her teenage daughter, Pat, was diagnosed with MG. Finding that little information was available, Jane established the MGFA to create a foundation whose mission was to have “A World without MG.” This newly formed foundation provided patients and families with the information and support needed to understand and cope with MG. Until a cure is found, the MGFA will continue Jane Ellsworth’s efforts to help patients and their families manage the difficulties of living with MG. The Foundation continues to provide patients and families with the information and support needed to understand and cope with MG. Until a cure is found, the MGFA will sustain Jane Dewey Ellsworth’s efforts to help patients and their families manage the difficulties of living with MG. The MGFA’s bequest society has been named in honor of Ellsworths.

What is a recent project or work that you are excited about?

The research committee of the MGFA is committed to supporting research that will ultimately improve the lives of patients with myasthenia gravis and related neuromuscular junction disorders. The committee has identified four broad research priorities of unmet need in the field.

• Biomarkers
  • Early diagnosis
  • Predictors of clinical outcome
  • Predictors of response to immunosuppressive therapy
  • Biomarkers for use in clinical trials

How can people help your organization the most? What is your biggest need currently?

Fundraising for research. The MG Walk Campaign is dedicated to creating awareness, renewing hope, and generating a vast network of community and support, all while raising important funds for the Myasthenia Gravis Foundation of America (MGFA). The MG Walk puts the power directly into the hands of MG patients and allows everyone battling this illness to become the driving force behind funding for MG research, and ultimately, in finding a cure. In addition to fundraising, the MG Walk also allows patients with MG to open up and discuss their journey in a safe and nurturing environment, many for the first time while experiencing an overwhelming sense of community from their loved ones and fellow MG patients. Join us as we come together to raise vital funds that go to supporting the tens of thousands of Americans who live with this rare disease every day.

What is your organization’s website or the best way to contact?

http://myasthenia.org

http://www.mgwalk.org