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 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.  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  jodi.roth@fmdsa.org

The FMDSA membership offers:

  • Discounted Annual Conference registration
  • A subscription to our newsletter published four times a year
  • Up-to-date information and news through the FMDSA E-mail Network
  • Personalized connections with other affected individuals and families

**To become a member of FMDSA or to make a general donation simply follow this link and choose your membership level. Membership is for a one year period and must be renewed annually.

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November, 2014 Annual Appeal Letter

We first wish to thank those of you that have supported our organization through your donations of personal time, money, and expertise. Without your help we could not have made the great strides we have over the course of the last decade.

Our growth throughout the past 11 years has given our organization a worldwide presence and helped us to create awareness on a scale we never imagined. We have educated patients and healthcare providers internationally, resulting in increased awareness, collaboration, research, faster diagnosis and treatment, and FMD Clinics throughout the United States.

By uniting physicians with an interest in FMD throughout the world we assisted in the development of the International FMD Research Network. This past May, was the first International FMD Research Network Symposium and we were there. The event was co-chaired by medical advisory board members, Heather Gornik and Jeffrey Olin. The Network teams have identified and are attempting to address the many issues specific to FMD.

One of our proudest accomplishments to date has been the FMDSA funded, FMD Patient Registry. The database will one day give us a full understanding of the disease and hopefully lead to the best treatment options and possibly a cure. There have been more than 20 posters, abstracts and manuscripts already published from the data in medical journals and presented at medical conferences. To date over 1,100 patients have participated and we have 14 active registry centers enrolling patients. Additional centers throughout the US, Canada and Europe wanting to participate in the registry have been placed on a wait list, with the goal of adding centers in 2015.

From our very first Annual Meeting in 2008, we have supported many on site research projects by coordinating and facilitating blood draws, saliva collection and even a quality of life study for patients living with FMD. These projects will help us to better understand the disease and its impact. This year, FMDSA participated in Rare Disease Day in Washington, DC representing patients affected by FMD. We were also successful, in getting the first ever nationally recognized Fibromuscular Awareness Day designated as March 11th, in the state of Michigan.

These programs and others, such as attendance at national and international meetings, educational programs, and our awareness campaigns are self-funded. The registry alone costs us in excess of $40,000 annually. In these tough economic times grants, donations, and free money are not easy to attain.

We have several corporate and private donors that provide us with generous donations that pay for a portion of these expenses. Some members have made the effort to hold personal fundraisers to support the cause. Sadly these efforts are not enough to sustain our organization and continue as we have in the past. Restructuring of the organization, and cost cutting measures have already been made. We do not wish to compromise the integrity of the FMDSA and we are determined to maintain the patient registry, annual meeting, and other worthy programs and services that we provide.

We hope that we can count on you. We are asking that you support our annual appeal by making a cash donation. Let your friends and family be reminded of the seriousness of your disease and ask them to help in any way they can. Maybe even just a small donation to recognize your involvement with the FMDSA and acknowledge you as an active part of helping others and working towards a common goal. The more people that get involved, the greater our goals and accomplishments.

We are optimistic that the patients, families, friends, healthcare workers, and concerned people will appreciate the urgency of our situation and give us the financial support to succeed. We understand that everyone does not have the ability to personally contribute at this time. However, you should not feel awkward or guilty asking others to contribute to your cause.

Whether you donate now, or later on when you have the ability, your gift is always welcome and even the smallest donation plays a big part in our health as an organization. Get involved, and help by keeping up on the fundraising activities we are currently running such as the Medical Alert Bracelet fundraiser and our Café Press Store, that offers many great items to raise awareness of FMD. Help by sponsoring our runners in the 2015 Cleveland Marathon. What better gift could you ask for on a Birthday or for the Holidays but a small donation towards your health?

With Hope,

The FMDSA Board of Director

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

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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
- 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. 
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 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 jodi.roth@fmdsa.org

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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