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Nonprofit Overview

Mission: FMDSA is a not for profit organization working towards better diagnosis and treatment of fibromuscular displasia (FMD). We do this by building awareness of fmd, funding research activities, providing patient support, and educating patients and the healthcare community.

Results: The United States Registry for Fibromuscular Dysplasia: the patient registry was developed in cooperation with the University of Michigan Health System Cardiovascular Outcomes Research and Reporting Program (MCORRP). The purpose of the registry is to collect and analyse data from FMD patients seeking treatment at one of the 13 FMD Registry Centers in the United States. The database has grown to over 1,400 patients being enrolled as of October, 2016. The FMDSA funded FMD Registry is the largest registry in the world collecting data on patients diagnosed with FMD. Our goal is to continue adding more centers within and outside of the United States. The data base is helping us to learn and understand more about the disease, which will help to set protocols for treating the disease and lead us to hopefully finding a cure. Over 20 articles and abstracts have been published in medical journals with data from the registry and the data has been presented at medical conferences Internationally. Annual Conference: FMDSA holds it's conference in a effort to educate patients and medical professionals on the latest findings. Every year attendance grows with patients/families coming from all of the United States, Canada, New Zealand and Australia. Professional Education Program:this program is a combination of attending medical conferences and supporting educational classes within hospital environments. The program is a major focus of the FMDSA and has been an avenue to educate literally thousands of medical professionals. The result is a greater awareness of FMD within the medical community, improved medical expertise for patients, and development of key partnerships that are helping us spur research activity. We have also created a research network page on the website that host the information being published from the patient registry and other research studies. Patient Toolbox: The patient toolbox contains many items to help support patients, including: A letter to family and friends, dictionary, emergency alert card and much more. There are also power point presentations and videos available for health care providers. as well as patients and care givers.

Community Stories

45 Stories from Volunteers, Donors & Supporters

5

Client Served

Rating: 5

FMDSA has been my daily source of information since my new diagnosis of FMD on June 4 2017. Weeks ago I had never ever, imagined I'd have a stroke, never had I heard of FMD or of FMDSA. Today, I am an FMD info. sponge soaking up all of the articles, stories and support provided by this wonderfully managed organization. I am not sure what I would do if it weren't for this sight, and the individuals I am connecting with. As I figure out next steps and how to manage my post stroke self with dissections of my right ICA and vertebral artery. I am so grateful to be a stroke survivor. I am scared, but will face these fears as I learn more about the cards I have been dealt. I know I am not alone, and I can advocate for my health better because of FMDSA.
Here is my story... I am a 46 year old female, mother of two, and restaurateur along with my wonderful husband. I am the picture of health, with a daily focus on a clean diet and an active lifestyle. The last thing I thought was in my cards was a stroke. Until, on May 31, 2017, I had a stroke while working at our restaurant. My morning started great, caterings going out the door and a busy lunch rush, when a headache came on and progressively intensified. I don't get headaches and just thought I'd plow through the day and rest when I got home to enjoy a glass of wine with my husband . Suddenly, I felt my neck tightening and I lost sight in my right eye, like an oil slick pouring over my eye, and my head felt like it was in a vice clamp. I called my husband, knowing something was going very wrong, then I called the on call advice nurse who advised me to get to the ER immediately as I got a tingly sensation and numb hands. She said I may be having a STROKE and could she phone 911. My husband came into the restaurant and rushed me to our local ER where I spent the next five days getting scans and tests, all the while trying to bring down my very high BP. Initial local hospital CTA scan showed my right carotid artery was 100% occluded and I had a V3 segment vertebral artery dissection. The neurologist kept insisting I must have had trauma to my neck, but I assured him I have not. I inquired if there was better imaging that could be done elsewhere so that we could see inside better. The neurologist just shook his head, but still could not give me any answers as to why my BP spiked, I had a stroke, and compromised blood flow to my brain? This all seemed so wrong, I thought I was so healthy. We could not know the composition of the blockage of my right carotid artery with the imaging we had. I requested and was denied a transfer to UC Davis Medical center. So I was stuck there at our local ER for five days, continuing blood tests, all coming back healthy until I was discharged on June 2 when my diastolic BP finally got below 100. They let me go home with no clear instructions.
Just a few hours after getting home, my BP was increasing again, slight headache still with me, so my sister and my husband packed me up to go to UC Davis Medical Center. By June 4th, they diagnosed me with FMD in my left carotid artery, dissection of my right ICA (80-99%occluded) and vertebral artery with flow. I am trying to understand how this all went down, and how to be the new FMD me. How to heal my dissections, and move forward with my beautiful life.
With the help of the FMDSA community, I feel confident, together we can find answers and hope for a cure!

3

Volunteer

Rating: 5

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 through out the country! There is a FMD patient registry Funded by FMDSA! I can now go into a new doctors 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 it's place! The photo is of Executive Director Pam Mace, Dr. Jeffrey Olin and Dr. Heather Gornik. These three among countless others have volunteered hours of their life so that we can find answers. Thank you!

makeadiffernce

Client Served

Rating: 5

FMDSA has been the catalyst for engaging the medical community to pursue research! The amount of research and articles published in the last ten years correlate with the founding of FMDSA. Thanks to their constant presence at medical conferences, grand rounds and push to share awareness via various medial outlets and social media , FMD is now a recognized vascular disease. With the establishment of the FMD Patient Registry, funded by FMDSA research is in full force, offering hope and answers for those affected by FMD.
Thank you to this wonderful organization!

Previous Stories
1

Volunteer

Rating: 5

I am overwhelmed with gratitude for the accomplishments this organization has done. When I was diagnosed back in the 90's I was told there would never be research in my lifetime. My doctor said it was to rare and no one would care because there was no money to be made. Well FMDSA and our fearless leader Pam Mace did care. Along with amazing Doctors such as Heather Gornik, Jeff Olin, Dr. Jaffe, Dr. Kim, Dr. Stanley, Dr. Meyers, Dr. Gray, just to name a few! There are now registry's and centers through out the US and beyond. Doctors are now engaged and listening! We are now monitored and watched to prevent events. Prior to the research coming out most doctors didn't even know what FMD was, more less to monitor us! It is so comforting to know how much further we will be in a few years as data continues to come out of the registry. My children and grandchildre will have the best medical care possible. I doubt any of my offspring will have to loose a kidney as I had to.
If you are newly diagnosed this is the organization to join. Check out their website and read the "patient stories" section. Or visit their FB page. There is also a fantastic support group on inspire. All the information can be found at FMDSA.org.
Thank you FMDSA!!!

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Lisa583

Volunteer

Rating: 5

I was first diagnosed 13 years ago... and told there was little information available about this disease and I was on my own... from a designated stroke center in a major city.... a couple years later I connected with FMDSA via an internet search and found a doctor ... information... a support group and friends.... what more could I ask for? The medical knowledge and emotional support I have received has been a life changer.

Thank you FMDSA

Lisa Shelanskas
West Suffield Ct

Volunteer

Rating: 5

This organization provides life changing & life saving information throughout the year. The annual conference in Cleveland in May brings together patients, advocates, & health care professionals to learn about updates in diagnosing & curing this "rare" disease, to share real life experiences, & to network. I have met some of the nicest, hard-working, generous, & dedicted people I have ever known through my involvement with FMDSA.

Client Served

Rating: 5

I have found FMDSA to be a place where I can go for support and guidance. The organization puts forth endless effort to bring awareness on a global level to those affected with FMD. Very grateful that I have found them.

Volunteer

Rating: 5

I have fibromuscular dysplasia in my renal arteries that was diagnosed in 2009. I had symptoms starting at are 12. I looked so healthy. My blood pressure could not be being controlled with five medications. I had to have renal artery bypass surgery in 2010. My symptoms are now controlled. FMDSA was the only resource I had for information and support. I had a FMD coach through my horrific surgery found through FMDSA. I didn't ask for help, they offered it to me. She lives in Georgia and I live in Washington State. I am a clinical social worker accustomed to obtaining assistance, not receiving it! But my tangential connection with FMDSA found her for me and she was invaluable because she knew my challenges. Some day Sheila and I will meet. I am thankful for her help and love her like a sister.

FMDSA is on the leading edge in all facets with this "rare" disease that is not rare. Through education, symposiums with the experts, through the FMD Registry and the FMDSA Forum, we are an aware and articulate group of patients. We advocate for each other, for funding for research, for education. There is no group quite like FMDSA and I am extremely proud to be a tiny part of this organization and to be able to coach and cheerlead others who are diagnosed with FMD. Research is now worldwide and I would credit FMDSA, Pam Mace, RN, Drs. Jeffrey Olin and Heather Gornik with leading the fight for knowledge about FMD. This nonprofit is worthy of being considered truly great.

Volunteer

Rating: 5

FMDSA provide support and education to individuals reaching out to find answer on this rare disease. For many, they have been struggling with very serious symptoms for years not know what is wrong with them . FMDSA offers Web Chats and an annual meetings to help bring patients together, learn more about the disease and connect with providers that share valuable insight on this rare disease.

Volunteer

Rating: 5

The FMDSA is a life-line for people diagnosed with this rare condition. Often when patients are diagnosed by their clinician, they are the only one that he/ she has come across and therefore there is no particular information or known management protocol to follow. Clinicians all over the world direct their newly diagnosed patients to the FMDSA site as a point for information and support. Doctors themselves also use the site for guidance in management strategies. This has been my experience both as a patient with FMD and as a medical professional. The organisation is an excellent resource and very up-to-date. FMDSA is very responsive to communications and offers support in many ways. FMDSA Made a world of a difference to me at diagnosis and still does 7 years on.

1 AJLEVY

Volunteer

Rating: 5

I was diagnosed with FMD six years and ago. It was quite overwhelming to be diagnosed with a disease that I had never heard of and that my doctors knew little about. I can remember the first time I "googled" FMD and found FMDSA.org. Not only was I able to learn all about FMD, but I was also able to find a doctor that was knowledgeable about this disease who was close by. I knew immediately this was an organization that I wanted to support in any way that I could. Thanks to Pam Mace, the Director of FMDSA , the Board Members and Medical Advisors awareness about this disease is getting out there to the medical community. Now all of my doctors know about FMD and there is now an FMD Clinic in my hometown. FMDSA also started the FMD Registry which has provided such valuable information for both medical professionals and those that have this disease.

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 non profit. It's a first class professional and compassionate organization.