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.
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
- The opportunity for you to contribute and make a difference
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
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
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
- All partnership opportunities must align with FMDSA’s Mission and or have a positive reflection on our organization.
- Partners must have a minimum of one year of established business operations and remain in good standing. with applicable registration and business bodies.
- Corporations must hold themselves to the highest ethical and business standards, including, but not limited to, not making false or misleading claims about their products or services.
- Promotional arrangements may not state or imply endorsement of products or services by FMDSA.
Additional Considerations
- FMDSA does not sell, loan or distribute its mailing list or email addresses to third parties.
- FMDSA does not enter into cause marketing relationships in the following business categories
- • Firearms
- • Tobacco
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 Board Member Kellie Smiddie at kellie.smiddie@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.
Beadie Fun Fact
Pulsatile tinnitus has been recognized as a common manifestation of cerebrovascular FMD
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!
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
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 volunteer coordinator Carol Rogers at carol.rogers@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
Beadie Fun Fact
There is no cure for FMD. Treatments are focused on managing symptoms and complications of FMD
Donate
DonateWe need your financial support to enable us to continue to fund research through the United States Registry for Fibromuscular Dysplasia. FMDSA, solely funds the Registry through donations made by our members and patient community. Funds are also required to raise awareness, attend conferences to educate medical professionals and to provide patient support .
As you can see by the review posted below, we are truly making a difference in people's lives...Even the smallest donations add up and allow us to continue our work.
Thank you for helping us to support our patient community, raise awareness and fund research.
WITHOUT AWARENESS, THERE IS NO FUNDING.
WITHOUT FUNDING, THERE IS NO RESEARCH.
WITHOUT RESEARCH, THERE IS NO CURE.
-Author Unknown
Reviews as posted on Great Nonprofits
You may make a tax-deductible donation. The Fibromuscular Dysplasia Society of America, Inc. was founded on March 11, 2003 and received tax-exempt status on October 7, 2003. FMDSA is a Delaware nonprofit corporation which is classified by the IRS as exempt under IRC Section 501(c)(3) and as a “public charity” under IRC Section 509. Donations from individuals and corporations are tax-deductible to the extent permitted by law.
Tax ID: 01-0771966
Beadie Fun Fact
There are inadequate data to recommend one imaging modality over another for assessment of suspected cerebrovascular FMD
Appeal Letter
Dear Friends of the FMDSA,
We have some exciting news! Over the years, data published from the FMDSA funded patient registry gained worldwide attention and led to international research collaborations. Those collaborations led to the most important paper ever written about FMD being published last month: “Genetic investigation of fibromuscular dysplasia identifies risk loci and shared genetics with common cardiovascular diseases.” This groundbreaking research identified three new genetic variants that are connected to FMD. Several years ago, the PHACTR1 gene was implicated as being associated with FMD. As stated by Dr. Santhi Ganesh, “We once thought FMD was a rare disease, but the current estimate is that it may affect more than 3% of the population” The data is very promising. Now that the key genes have been identified, researchers are hopefully closer to finding a cure. Since this publication, patients worldwide have been expressing how much hope they have for the future.
None of us could have anticipated that FMD research would be where it is today or that a common diagnosis would bring together so many patients around the world. The FMDSA was incorporated almost two decades ago, by a few people sitting around a kitchen table, concerned about the lack of knowledge, and understanding of FMD. Our members and medical board ensured that we sustained our programs, focused on our mission, and thrived in our pursuit to find the cause for fibromuscular dysplasia.
As promising as the recent findings are, there is still work to be done, and we need your help to continue. As with all nonprofit organizations, raising funds has been challenging, and cost-cutting measures had to be made. However, we endured and remained focused. Despite this, donations are down. Unlike larger nonprofits, we are funded almost entirely by our patient community. Would you consider a donation to the FMDSA?
Lastly, please join us on December 4th for our free virtual meeting. Speakers include Dr. Jeffrey Olin, Dr. Heather Gornik, Dr. Santhi Ganesh, and more. The recent genetic findings will be discussed, and you will have the opportunity to ask questions. Details will be sent out in our newsletter and also shared on social media.
We sincerely appreciate everyone that has supported the FMDSA through your donations of personal time, money, and expertise. We would like to acknowledge the patients and families that have participated in the research. Collectively, you have all led to our success and that of our research community.
United in hope,
Pam Mace and the FMDSA Board of Directors
Donation in Memory / On Behalf
Donation in Memory / On BehalfA donation to FMDSA in memory or on behalf of a loved one is a special and lasting tribute to those you cherish and respect.
In Memory
A notification will be sent to the bereaved family of the person remembered, as you specify, to acknowledge your memorial gift. Please include the name of the person being remembered and the name, address with zip code of their next of kin. The amount of the gift remains confidential if you choose so.
On-Behalf
Notification will be sent to your honoree to acknowledge your gift. Please include the name of the person being honored, his/her address with zip code, and if appropriate, the reason whether it be birthday, anniversary or just because. The amount of the gift remains confidential if you choose so.
Donate by Mail (26777 Lorain Rd, North Olmsted, OH 44070, USA) or donate using our Secure Online Form.
Send a check or money order made payable to the Fibromuscular Dysplasia Society of America, along with the name of the individual being honored and their address with zip code for an On-Behalf Gift or the name of the individual being remembered and the name and address with zip code of the next of kin for an In-Memory Gift.
Donate Airline Miles
Donate Airline MilesOur need to travel to medical conferences and to meet with institutions is growing. Your generous donation of airline miles will help us to meet our education and awareness goals in the coming year. The value of the airline miles is also tax-deductible.
To make a donation of airline miles, please call the FMDSA office at (216) 834-2410 or toll free at 888-709-7089.
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
Donate A Car
Donate A CarFMDSA has recently completed the necessary paperwork to allow members to donate their used cars. From each car donated, 70% of the proceeds will be contributed to the FMDSA. It's fast and easy! Simply call the number below and staff will assist with arrangements seven days a week. Call before 2PM local time for "Free Next Day Pick Up".
For more information contact:
Donate A Car 1-800-237-5714
Thank you to FMDSA Member Cecile Pileggi for bringing this program to our attention.
Non-Cash Gifts
While cash donations are always welcome, gifts can come in many different forms that provide the necessary funding to drive FMD research.
Securities
If you've invested in stock or real estate over the past few years, the news is that many of our holdings may have increased in value. The bad news is the capital gains tax that you will owe when you sell these appreciated assets.
But there is a way to completely and legally avoid all the capital gains tax on your investments while earning a current year tax deduction on the asset’s full value: by donating your stock to the Fibromuscular Dysplasia Society of America.
Congress has recently extended some very advantageous rules that apply to contributed investments such as stocks or bonds that have appreciated in value. You receive a full income tax deduction based upon the current market value AND you completely avoid ever having to pay capital gains tax on your donated investment. In addition, your charitable contribution may also help you avoid estate taxes.
The IRS Code was specifically designed to make it advantageous for more Americans to contribute to the charitable causes they wish to support. We hope that you will consider this prudent and responsible method of giving to fund much-needed research into FMD.
Personal Assets
There are ways you can make a gift of personal or real property to FMDSA and retain a right to use the property during your lifetime. The transferred property may be art, your residence or commercial real estate. In each case you will receive a charitable tax deduction for the present value of the FMDSA’s interest, which will offset taxes on your income. In addition, you may continue to use the property or receive income from it. At the end of your lifetime, the property may be sold with the proceeds going to support the research and awareness programs of the FMDSA, as you have directed.
Beadie Fun Fact
Some patients can have both multifocal and focal FMD
Planned Giving
You can be a part of the future.
Planning a gift for tomorrow will bring you benefits today. You can create your legacy, take some control over the future and build a bridge to coming generations. The rewards go beyond the personal. You will better the lives of people living with FMD and their families and inspire many people to work toward and invest in a future that holds no fear of FMD.
Bequests
Making a gift through your will is a meaningful way to make a lasting commitment. You can bequeath a sum of money, an item, or any portion of your estate.
Life Insurance
There are ways you can make a gift of personal or real property to FMDSA and retain a right to use the property during your lifetime. The transferred property may be art, your residence or commercial real estate. In each case you will receive a charitable tax deduction for the present value of the FMDSA’s interest, which will offset taxes on your income. In addition, you may continue to use the property or receive income from it. At the end of your lifetime, the property may be sold with the proceeds going to support the research and awareness programs of the FMDSA, as you have directed.
Retirement Plans
You can also arrange to donate a percentage of your choosing (as little as 1%) from your qualified retirement savings plan by designating FMDSA as one of your plan’s beneficiary.
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!
BONUS: Facebook does not take any percentage of these donations, which means everything contributed comes directly to the FMDSA!
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.
Since ancient times and across many cultures, the tree has long been a symbol of many things, including wisdom, protection, strength, inter-connectivity, and life itself. We’ve chosen the tree to represent the Fibromuscular Dysplasia Society of America for these reasons, and because the tree’s branches and roots signify the arteries affected by this disease. The tree’s branches, reaching upward and outward, provide protection and shelter, and represent our mission to help those who’ve been diagnosed with FMD. Trees, strengthened by their continuously spreading roots, symbolize how as we grow together we are stronger and more resilient. As with its growth from a delicate sapling to a giant robust tree, and as its branches and roots grow and spread, the tree symbol represents how we’ve evolved and continue to promote research, education and patient support throughout the years. Together we can achieve much, as we strive to reach for the sky.