Through good times or bad , we the members of the FMDSA are here for you. The organization provides you with valuable resources and lends support in dealing with the disease, Fibromuscular Dysplasia. We offer support for research, advocacy to raise awareness of FMD, and we fight for recognition and respect for you in the uphill battle against a rare disease. But we can’t help you unless you help us. We rely on our members to provide us with the monies necessary to run the FMDSA. Regardless of the size of your contribution every penny counts, and 100% of your donation is tax deductible.
FMDSA membership offers:
- Up-to-date information and news through the FMDSA E-mail Network
- Personalized connections with other affected individuals and families
- Discounted Annual Conference registration
Please donate what you can, If you are not able to make a donation at this time, we do offer a free membership. If you have questions about membership please contact Jodi Roth for more information firstname.lastname@example.org
Contact your State Representatives to get May designated as Fibromuscular Dysplasia Awareness Month.
Here is a sample letter that you can copy and use to send to your representative, click here to get the pdf of the Resolution that should be submitted with your letter. Please contact DeeAnne if you have any questions on this process email@example.com
City, State Postal Code
City, State Postal Code:
Dear (name) I am writing to request your assistance in designating May as Fibromuscular Dysplasia Awareness Month
Fibromuscular dysplasia (FMD) is a disease that causes abnormal cell growth of the arterial wall. FMD can lead to areas of narrowing (stenosis), beading, aneurysms, and dissections (tears) of the arterial wall. Until recently, there has been very little progress made in understanding the disease since it was first diagnosed in 1938. There is no known cause or cure for the disease and there are no set protocols to treat the disease.Many researchers now believe FMD is an under-diagnosed disease. Some of the data suggest that 4-5% of the population may be affected by the disease.
Patients and their families must bear a large share of the burden for things such as educating others, including their own physicians, and raising funds for awareness and research. Patients often experience problems such as a sense of isolation, difficulty in obtaining accurate and timely diagnosis, and optimal treatment options.
I strongly believe the Resolution of Fibromuscular Dysplasia Month will increase awareness, improve the delay in diagnosis, lead to better treatment and improve the lives of patients and families affected by the disease.
I thank-you in advance for your time and consideration.
FMDSA Circle of Friends
To help fund the United States Registry for Fibromuscular Dysplasia, we have created the
FMDSA "Circle of Friends". The FMDSA Circle of Friends is a group of committed benefactors with an interest in supporting the patient registry. By making a gift or pledge of $5,000 or more annually, you can help FMDSA ensure that the registry continues. Without the registry, we are just a group of patients. With the registry, we are a voice that has gotten the attention of the medical community.
You can be a part of something great while making a difference in the lives of patients, not only today, but for generations to come. For many of our members, their daily activities of living are affected and they do not have the ability or means to give. It takes special individuals like you to help make a difference.
FMDSA has made substantial progress in raising awareness of this disease and educating medical professionals over the last decade as evidenced by the increasing number of patients that are newly diagnosed. We need your help to continue to be a voice! To learn more about the FMDSA Circle of Friends, please contact Jodi Roth at firstname.lastname@example.org
FMDSA's Amazon Wish List
The Amazon Wish List allows organizations such as ours to defray the cost of many items we would otherwise need to purchase, and allows benefactors the opportunity to make a donation to FMDSA in the form of an item that we need in our office or for a conference. Click here to search through our "wish list" and find an item that you would like to donate to FMDSA. It is that simple; just add to your shopping cart, pay, and Amazon ship your donated item to FMDSA. Thank you in advance for helping support FMDSA via our Amazon.com wish list. Please note that it has come to our attention that Amazon is not sending a gift notice with your orders so for now unless you contact us directly we have no way of knowing who sent the items. We are working with Amazon to resolve this issue. Thank you for your donations!
WITHOUT AWARENESS, THERE IS NO FUNDING.
WITHOUT FUNDING THERE IS NO RESEARCH.
WITHOUT RESEARCH, THERE IS NO CURE. WITHOUT A CURE, THERE IS NO HOPE.
WE NEED TO WORK TOGETHER TO MAKE SURE THERE IS ALWAYS HOPE