fibromuscular dysplasia support, education & advocacy
Fibromuscular dysplasia (FMD) is a complex disease that is most commonly seen in women, with systemic presentation that may include stenosis, aneurysm or dissection most commonly in the renal and carotid arteries, migraine-like headaches, dizziness, and tinnitus or a swooshing sound in the ears. Low bone density, joint laxity and degenerative disease in the spine also have been linked to the disease. FMD is considered a rare disease; however, it is also believed to be underdiagnosed.

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Call to Action: FMD Chat Needs You by AfternoonNapper

FMD Chat needs your support in our push for $5,000 in funding via MedStartr. Why should you care? Because frankly not many people do. Rare diseases like fibromuscular dysplasia don't have the support of the masses. We don't have celebrity spokespeople. We have one another and people like you —friends, family, complete strangers — on whom we rely to champion our cause.

I know that there are always a zillion causes in need and angling for your support. And there are always startup investment opportunities that promise a return. FMD Chat is one cause, and it won't double your money. But giving will make a difference. And don't think that just because you can't give a lot that you don't make a difference. One person's $10 may be a significant as another person's $100 dollars—we all have different incomes, different bills to pay, different realities.

FMD Chat needs support to achieve official nonprofit status which will include formal IRS filing and joining the N.C. Center for Nonprofits to ensure proper nonprofit management. Funding also immediately will go toward the first annual FMD Chat Together social and educational retreat for patients and their immediate family members to be held on Sept. 8, 2012 and set the groundwork for the second annual retreat in 2013. Future FMD Chat projects include awarding grants to rare disease research; leverage of funds through interest-based savings investment, pursuit of grants and fundraising; the development of a more sophisticated FMD Chat website including additional resources for patients, caregivers and healthcare providers; printing and distribution of FMD Chat’s educational “What is FMD?” posters to healthcare providers; development of additional educational resources for patients, caregivers and healthcare providers including video and print materials; translation of resources into foreign languages to increase awareness and outreach effectiveness through FMD Chat’s own website and strategic partnership with RareConnect, a joint effort of EURORDIS (European Rare Disease Organisation) and NORD (National Organization for Rare Disorders) to provide a safe space where individuals and families affected by rare diseases can connect with each other, share vital experiences and find helpful information and resources.

Please. Consider supporting FMD Chat and sharing this message with everyone you know. We've got $2,620 left to go and only 36 days in which to do it.