GreatNonprofits: Find non-profits and charities to review, donate, or volunteer.

Oops! You must enter a search term greater than 3 characters.

MollyC

MollyC - charity reviews, charity ratings, best charities, best nonprofits, search nonprofits
31 Profile Views
1 Reviews

Login to send private message
Click here to get your favorites badge.
FIBROMUSCULAR DYSPLASIA SOCIETY OF AMERICA INC
February 13, 2013

My FMD journey started in 2004. I had persistent tingling in my hands and my neurologist ordered an MRI. Lucky for me, I had an obvious aneurysm. I consider myself lucky because without that aneurysm, the doctors would not have ordered further tests that confirmed not only the aneurysm but also FMD of both intracranial carotids.

Because of the commitment of FMDSA to attend conferences and work closely with medical professionals, doctors have more information about the disease resulting in new patients being diagnosed sooner. Although there are no treatments for the disease, there are treatments for symptoms and early diagnosis enables a patient to change their lifestyle to protect themselves from life threatening complications brought on by FMD.

FMDSA is funding a FMD registry that is collecting data that is being used to further study the disease. This is so encouraging to the patients and families because of the hope for treatment and possible cure or at the very least, just understanding of the disease and the symptoms.

The FMDSA conference is one of the most important aspects of the organization for me. The camaraderie between patients is uplifting and helpful when folks are feeling insecure in their health. The speakers are knowledgeable and make time for questions from the audience. In that conference room sits a tremendous amount of insight and education about FMD.

More feedback

Was your donation impactful?

Definitely

How likely is it that you would recommend that a friend donate to this group?

Definitely

How likely are you to donate to this group again?

Definitely

When was your last experience with this nonprofit?

2013

MY ROLE:
Donor

Review from Guidestar