Get Involved

Become a Member of FMDSA

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 also fund research, provide education for medical professionals, advocate 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 do this without YOU! We rely on our members to provide us with the monies necessary to support these programs and our mission. Regardless of the size of your contribution every penny counts, and 100% of your donation is tax deductible.

 

To become a member of FMDSA or to make a general donation click the button below and choose your membership level. Membership is for a one-year period and must be renewed annually.

Become A Member

FMDSA Membership Offers

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 deeanneflynn@gmail.com

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Beadie Fun Fact

Focal FMD is usually discovered before 30 years of age and often with blood pressure values on average higher than those observed among patients with the multifocal form

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Corporate Sponsorship

The Fibromuscular Dysplasia Society of America (FMDSA) is a public health charity working towards better diagnosis and treatment of Fibromuscular Dysplasia (FMD). Its seeks to accomplish its mission by promoting awareness of FMD, funding research activities, providing patient support and educating patients and the healthcare community.

Corporate Memberships are available to institutions/organizations that support the FMDSA Mission and will partner with FMDSA to support its programs. As a non-profit organization, FMDSA relies upon donations to keep us at the forefront of research, education, networking, and patient support. Corporate sponsorship can provide significant funding to help keep us strong.

 

FMDSA will enter into only those corporate relationships that are respectful of FMDSA’s high standards, and that provide funding that is unbiased, ethical and consistent with our Mission and Vision. Opportunities for custom program collaborations exist and innovative ideas are welcomed.

Requirements

FMDSA has established minimum requirements for marketing relationships

Additional Considerations

FMDSA reserves the right to refuse marketing relationships with any entity for any reason.

Transparency

All relationships must meet the Better Business Bureau (BBB) Standards and be in compliance with the law.

If your organization meets the minimum requirements and you would like more information, please contact our Admin at admin@fmdsa.org

Logo

Uses of FMDSA’s name, logo or any of its licensed marks are strictly prohibited until a fully executed agreement with the desired party is in effect. Entities allowed to use FMDSA’s name, logo or any of its licensed marks much agree to discontinue their use upon the termination or expiration of the marketing agreement.

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 Pam Mace, pam.mace@fmdsa.org.

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Beadie Fun Fact

Pulsatile tinnitus has been recognized as a common manifestation of cerebrovascular FMD

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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: 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!

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Beadie Fun Fact

Focal FMD is less common, has the appearance of a focal or tubular stenosis, and it is most commonly diagnosed in children

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Whether you have been personally affected by FMD, want to give back to the community, or looking for career experience, we would love to hear from you.

FMDSA is run by one full-time and one part-time employee. The organization has grown beyond our expectations with so many patients now getting diagnosed. There is no way that we could sustain the organization or meet our goals without our dedicated and enthusiastic volunteers. They are a valuable and essential resource for FMDSA!

If you or someone you know is interested in volunteering for FMDSA, please download the FMDSA Volunteer Application and email our Admin at admin@fmdsa.org

Currently, we are in need of volunteers to help with social media, writing for our webblast, marketing, development, and fundraising. Please consider getting involved!

I volunteer for FMDSA by being a moderator for their FMD Support group on INSPIRE. When I welcome new members I always suggest checking out the FMDSA.org website. It is great knowing I can give newly diagnosed FMD patients a link to an organization that I know they can trust and find the most up to date information . I can also say volunteering for FMDSA has been the most rewarding experience I have ever had with a nonprofit. It’s a first class professional and compassionate organization.

– Abbie

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Beadie Fun Fact

There is no cure for FMD. Treatments are focused on managing symptoms and complications of FMD

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Fundraising - Why is it important?

Rating: 5 as posted on Great Nonprofits

This great organization has truly brought hope to my life! I was diagnosed when there was no organization around representing us affected by this disease. I was told no one would ever fund research in my life time because my disease was to rare. Yet in the ten years FMDSA.org has been around the engagement of the medical community is astounding! There are FMD Registry sites and centers throughout the country! There is a FMD patient registry Funded by FMDSA! I can now go into a new doctor’s office and most of the time they have heard of FMD. Prior to FMDSA the doctors would always confuse my disease with Fibromyalgia. Just google Fibromuscular Dysplasia and you will get thousands of articles! When I was diagnosed there were three! This organization has given me such hope for not just myself, but for my children and their children! A great big thank you to FMDSA, you have taken away the fear of this disease and offered up hope in its place! Thank you!

The FMDSA needs heroes! You can help make a big difference in furthering research, spreading awareness, educating health care professionals, and offering patient support.

In order to continue with our efforts, we need to raise funds. We’ve been fortunate to have had some of our members hold fundraisers in the past, and we hope all FMDSA members to consider holding their own fundraiser to help us continue to learn more about FMD, help patients and continue to spread awareness. Fundraisers can be as small as selling baked goods or a gathering of family & close friends, or something on a grander scale, such as a dinner or dance. It all helps!

If you decide to hold an event, the FMDSA is willing and able to help you plan and organize it.

To help inspire ideas and to offer up some guidelines, we’ve put together an information
sheet to help get you started: Fundraise for FMDSA

Go Fund Me
Fundraising made easy. Go Fund Me makes creating your own fundraising page easy and it’s linked to FMDSA. To view how it works and read about other successful fundraisers and ideas please visit the Go Fund Me website.

If you have any questions please contact Lora Santanastaso at donateFMD@aol.com

Facebook Birthday Fundraiser

Why not make your birthday extra meaningful by helping to raise money for the FMDSA to help promote awareness and fund important research? Many in the FMD community have already helped to support us in this way, and it’s greatly appreciated!

Amazon Smile
Are you shopping on line this holiday season? Do you frequently use Amazon? If so, did you know that you can support FMDSA by registering and using Amazon Smile when you shop. Just follow this link to get started and make sure to choose us as your selected organization https://smile.amazon.com/

Please share with your family and friends and ask them if they might support us as well! Thank you!

Use GoodSearch to Fundraise for FMDSA
FMDSA is now a registered charity with GoodSearch, a search engine which allows you to raise a penny for each search through their Yahoo! powered search engine. By creating a Dailygood profile on the GoodSearch webpage here and selecting the Fibromuscular Dysplasia Society of America as your charity of choice, you can begin raising money for the FMDSA every time you search the internet. You can also use your Facebook, Google+, or Yahoo! account to sign up for a Dailygood profile. With this profile, you can also use GoodShop, which partners with popular retailers to donate a portion of each purchase to charity. Both of these options are easy and rewarding ways to raise money for the FMDSA.

Shop online with iGive.com
Shop using iGive.com and up to 26% of your purchase at over 800 great stores is automatically donated to Fibromuscular Dysplasia Society of America.

Join iGive for free, and a portion of everything you purchase online will be donated to FMDSA at no additional charge to you! Using iGive.com means a donation of at least $10 for FMDSA- $5 for using iGive & $5+ for your 1st purchase. The donations keep growing as you keep shopping.

It’s free, it’s easy, and every purchase you make generates a donation to FMDSA. Shopping through iGive.com is safe and secure. Your privacy is always respected. They will never sell any of your personal information. After you make a purchase, the

FMDSA will receive a check from iGive.com for 100% of the donation percentage listed adjacent to each merchant on the site. You can use the Web site to track the funds you have raised, or to see how much FMDSA has received overall. It’s all part of what makes iGive.com the best way yet to shop on the Web, not to mention the best way to show you care. Start your shopping experience TODAY!

Fundraise through FirstGiving
FirstGiving makes it easy and simple for you to raise funds quickly and easily to help support vital FMDSA programs like our International Patient Registry, Grassroots Awareness Program (GAP), and Physician and Patient Education Programs. Firstgiving provides the template, and web address. All you need to do is fill in the requested information! You can then e-mail your personalized web page to family and friends to encourage donations by credit/debit card in an easy, secure transaction.