Outstanding organization in their MG patient support and advocacy as well as support of relevant research. Highly recommended!
I have never heard of this foundation until I read some very nasty rude comments from some ladies in Kentucky representing this foundation. The ladies are posting very rude and vulgar comments on a business website because the owner did not want to give to her fundraising event. The owner has in public site " NO Solicitors" on his front door. Since the owner said no, the ladies started making up lies to degrade the business. This is unprofessional to the foundation and to my community. The ladies located in Bullit County Kentucky need to be more professional when it comes to asking for charity or for fundraising items or money. If there is anyone who can reach out to the ladies of the foundation in KY please do so. They need to understand how to be professional when representing a foundation as this. I have read more information on this disease and will pray for some type of cure. God Bless to those who are suffering through this disease. My heart goes out to you.
The MGFA is the only national organization devoted to patient care, educational matierials and research for this rare and often misdiagnosed illness. An illness that can hit anyone regardless of race or color or age or sex at any time. The MGFA, now in it's 60th year of operation has spent more money for research on MG than any other organization which claims to be funding Neuromuscular disease research such as the MDAA. For MG patients, MGFA is a lifeline to doctors who are familiar with MG its various treatments all of which are off-label. It's status as an Orphan disease by the NIH makes it incredibly difficult to rise above all the noise of other medical charities and causes many patients to be misdiagnosed or undertreated. The MGFA is there to help to provide both patients and medical providers with information, referrals and support.
The MGFA is the only volunteer national not for profit supporting myasthenia gravis. In the past several years it has made major strides in advancing it's national campaigns and awareness programs to reach out to the 70,000 and more myasthenia patients, their families and medical providers and to promote and support meaningful research on MG. The MG Walks started in 2011 are the signature event in outreach and education in the MG community.
MGFA is committed to serving people of all ages with myasthenia, their caregivers, their teachers and families. One of the many ways we raise awareness is through our Walks. The 2012 MG Walk locations are Tallahassee, Jacksonville, Orlando, St. Petersburg/Tampa, and Boca Raton, Florida; New Orleans, LA; Las Vegas, NV; Philadelphia, PA; New York, NY; Columbus, OH; East and West Michigan; Milwaukee, WI; Phoenix, AZ; Seattle, WA; Los Angeles and San Francisco, CA; Boston, MA; and the Virtual Walk. Plan to walk with us in 2012! For information on dates for each location, how to register, volunteer or donate, go to www.mgwalk.org or call 1-855-MGWALKS. And if you would like to just come check us out, then find us at http://www.myasthenia.org
There is nothing more odious than a degenerative nerve disease. This is made worse by people not understanding what your condition is. The Myasthenia Gravis Foundation of America exists to support those victims, who have this condition/disease; educate the public and sponsor contribute to research for a cure. I am delighted to have the opportunity to work as a Board Member, Executive Committee Member and Co-Chair of the Risk Management Committee for this fine organization.
This is a very patient-oriented, all-volunteer patient advocacy organization for a rare disease, myasthenia gravis.