Welcome to FMDSA
The Fibromuscular Dysplasia Society of America is a public health charity working towards better diagnosis and treatment of Fibromuscular Dysplasia (FMD). We do this by building awareness of FMD, funding research activities, providing patient support, and educating patients and the healthcare community. Learn more about our organization.
FMD Awareness: March is now officially recognized as Fibromuscular Dysplasia Month in Michigan, Ohio and Pennsylvania!
Thank you to Governor Rick Snyder, Ohio State Representative Nan Baker and PA State Representative Joe Hackett for officially proclaiming March as Fibromuscular Dysplasia Awareness Month. This designation is a major accomplishment not only for all of you who fight to raise awareness for this disease, but everyone who struggles with FMD on a daily basis. Please contact Pam Mace (email@example.com) to learn more about the process and how you can make this happen in your state.
2015 Patients United.
It is that time of year again when we are looking forward to our fundraiser "Patients United" which is held during the months of September and October. We try to get as many members in different states involved, hosting their own events.
Individuals can have an event or groups can work on one together. Events can be any size. Some past events have been:
Jeans Day at Work
Wine Tasting Party
Raffle a Cottage Stay
Having your local doctor speak at your event, has been successful.
As you can see there are lots of ways to fundraise. There are also many great fundraising ideas to be found on the internet. Small or big every dollar raised for FMDSA helps us to continue to support the FMD Registry, funded solely by FMDSA.
If you are a group leader or member of a FMDSA support group perhaps your group might want to jointly work on a fundraiser. Or if you are an individual member and have not yet met others with FMD this might be a great way to reach out to someone and work on a fundraiser together.
Should you like to participate in Patients United or have any questions please contact Maureen at firstname.lastname@example.org. Let's make this the most successful Fundraising year yet! We would be happy to post your event and include it in our web blast and on our website.
SAVE THE DATE, MAY 14TH 2016 FOR THE 9TH ANNUAL FMDSA MEETING
In Cleveland, Ohio at the Wyndham Hotel in Downtown Cleveland.
To book your hotel, please contact the hotel directly (216-615-7500) and mention FMDSA to receive the discounted hotel rate of $115.00. We are so looking forward to seeing you.
Thank you to our Meeting Sponsors.
FMDSA was an Official Charity of the 2015 Cleveland Marathonand and we set the record for bringing in the most runners at 593! Please consider running as part of our team in 2016.
For specific information on the race, click here. RUN4FMDSA. We would like to encourage our runners to support or create a fundraising page; it's fast, easy and secure. To create your page, clickhere.
Congratulations to doctors Heather Gornik and Jeffrey Olin who Co-Chaired the First International Fibromuscular Dysplasia Network Symposium on May 15th and 16th, 2014 in Cleveland Ohio.
This meeting gathered key researchers and clinical thought leaders in the field of FMD for a state-of-the-art review of the existing knowledge base and current research activities related to FMD in the United States and abroad. A large proportion of the meeting was focused on the creation of an FMD research network, comprised of four focused working groups on various aspects of FMD research (epidemiology, genetics, research registries, and imaging and clinical therapeutics). To view all abstracts presented and learn more about the Symposium and working groups, please follow this link.
February 18th, 2014
Just Published, Fibromuscular Dysplasia: State of the Science and Critical Unanswered Questions: A Scientific Statement from the American Heart Association.
The authors did a great job and covered all areas of FMD including history of the disease, diagnosis, imaging, treatment and research. We would like to thank everyone involved, especially Dr Jeffrey Olin and Dr Heather Gornik for their dedication to FMD patients and FMDSA. The paper is free and can be found on Circulation, Journal of the American Heart Association.
American Heart Association Meeting, November 2013
A session on the Multiple Different Facets of Fibromuscular Dysplasia was just presented at the American Heart Association meeting in Dallas, TX on November 19th. Dr. Heather Gornik presented "The FMD Registry: What We Have Learned." To view her presentation, click here.
Also, presented by Rina Verma was " Understanding Patient Characteristics and Clinical Significance of Headache in Patients With Fibromuscular Dysplasia" to view her abstract, please visit the AHA website. To view information on speakers and all FMD topics presented, please visit the AHA web site.
This organization has earned the GuideStar Exchange Seal, demonstrating its commitment to transparency.
To revolutionize philanthropy by providing information that advances transparency, enables users to make better decisions, and encourages charitable giving.
Congratulations to medical advisory board member Dr. Santhi Ganesh
Dr. Ganesh was one of 16 researchers to receive the Doris Duke Clinical Scientist Development Award. She will receive $486,000 over 3 years for her research on the Genetics of Fibromuscular Dysplasia and Associated Aneurysmal Disease. To read the official press release, please follow the link below.
Supporting the Rare Disease Community
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 email@example.com
The Memsaic FMD Wall
Post your picture or a message for other FMD Patients to see. The bricks are only $15 each and you can buy more than one, only 210 bricks will be sold. Help us to build a beautiful FMD Wall, while supporting our programs. It's fast and easy.
To view our wall, please click here.
Other News Updates
Cath Lab Digest - Fibromuscular Dysplasia: The Registry and Results. Interview with FMDSA Executive Director, Pam Mace can be found here.
Results published in Circulation May 2012, from the United States FMD Patient Registry on the first 447 patients who participated. To view the article, click here. This is the most up to date information to be published on fibromuscular dysplasia.
For a copy of Circulation's Cardiology Patient Page on FMD published May 2012, click here.
Dr. Jeffrey Olin spoke at the ISET meeting in Miami on January 17th. For highlights of Dr. Olin's talk, please click here. Thank you to all who donate, the registry and this data would not be possible without you.
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!