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FMDSA

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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

71 Stories from Volunteers, Donors & Supporters

Client Served

Rating: 5

After learning of my FMD diagnosis in March/2019, I was terrified. FMDSA has been my lamplight in the sea of the unknown. I trust their evidence based research articles, website, providers, and advice. They are never too busy to answer a question. I think that they "get" the clients who look to them for reassurance and support. I have been to the Annual Conference, and will attend again. They provided a wealth of information. Additionally, it was nice to connect with others who have experience with this rare condition. Thank you FMDSA for the resources you provide!! I appreciate you!

Client Served

Rating: 5

Several members of my family, including my mother, have been diagnosed with FMD, and this organization has been fundamental in educating and supporting all of us. FMDSA connected me with a leading doctor in FMD research to be tested myself, and I plan to reach out to the same doctor in the future to have my young daughter tested. My family attends the FMDSA conference in Cleveland every May and thoroughly enjoys the education and lasting connections made there. It is amazing how much the conference has grown even over the past few years. I truly appreciate this organization and the meaningful work they do in regard to this complicated disease that we have so much more to learn about.

Lisa583

Client Served

Rating: 5

I was originally diagnosed with FMD in 2003, as an incidental finding. I had no where to turn, and no one in the medical community could tell me anything about the disease or what its impact might be on my life - other than it caused strokes, and was usually diagnosed on autopsy. Great day in my life. I found little on the internet, and just dealt with it internally for a few years. Randomly I would search the internet to see if there was anymore information available. One day I stumbled on the FMDSA.org site - and the doctors, and the patients and others who were just like me! I was able to see a doctor who knew what FMD was (other than a radiological finding), a life changer. I came to my first conference, and randomly met someone on the mass transit, who also had FMD. We became friends, and a support for each other. At the conference, I learned a lot of what not to be afraid of - and how to live life, with a diagnosis of a disease little was known about. In 10 years, I cannot believe what FMDSA has accomplished - in advocacy, in knowledge, in research studies, in every way - as a self funded group. The change in my life and perspective is phenomenal - and through FMDSA I am able to be a support to others, newly diagnosed, through out the country. If you have been diagnosed with FMD - reach out to this organization - it will help you immensely!
Lisa Shelanskas
Paramedic and Health Educator
West Suffield CT

Previous Stories
1

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

My friend, Pam Mace was diagnosed with FMD in 2000 after suffering and surviving a stroke.
Since her diagnosis 19 years ago, Pam has worked relentlessly no only to bring the professional medical community together, but to connect patients around the world linked by FMD. Pam also initiated the FMD Patient Registry to provide research, raise awareness, and educate patients and their families around the world. Pam’s passion for FMD patients and her pursuit for answers have been instrumental in bringing awareness to this rare disease.
As a result, the FMDSA Organization has become the recognized leader in FMD awareness, support, education, and research.
Pam Mace is an extraordinary human being and I am more than proud to call her my friend.

Carol Boissoneault R.

Board Member

Rating: 5

I was diagnosed with renal artery FMD in 2006 by my local doctor and had bilateral renal artery angioplasty. At that time my local primary care doctor gave me the handout from FMDSA as a resource and I later spoke with Pam Mace. I eventually decided to be seen at Mt Sinai as a resource center in 2007 and had bilateral second renal artery angioplasty again. I began to get involved with the organization and have remained committed to the organization. The registry and the resulting research have increased the knowledge of FMD so much over the years. I truly believe that my great quality of life is a result of the efforts on education both to medical providers and patients, the support of research and support of the organization. I get excited about our annual conference because I learn something new every time and get to meet new people with similar experiences. Thank you FMDSA.
Carol R




Ashley G.6

Volunteer

Rating: 5

My grandmother, Pam, was diagnosed in 2000 and have volunteered ever since. Pam goes above and beyond to make everyone feel like their story is being heard and will always try to get answers for everyone. FMDSA has gone from rare to estimating it will be as common as breast cancer and that millions of people will be affected. Pam and her team have put FMD out there. I am glad to be apart of helping! I am beyond proud of my grandmother. Pam is making a difference in many lives.

Board Member

Rating: 5

The FMDSA is the number one place Fibromuscular Dysplasia patients and their families go to for information, support and hope. Following my own diagnosis of FMD in 2008 Exec. Director Pam Mace met with me in person and has guided me to learn more about my rare disease. Ms. Mace provided me with the encouragement I needed and continues to do so 11 years later. The FMDSA has accomplished so much with very little money. The organization started a patient registry which is funded primarily by patients anxious to learn more about their disease. The registry is supported by physicians from respected medical centers around the country such as Mount Sinai, Emory, Cleveland Clinic just to name a few. I highly recommend the FMDSA.

Volunteer

Rating: 5

This organization (and founder Pam Mace) has put FMD, a rare vascular disease, on the map of medical professionals. Understanding of the disease would not have been as far as it is today without the work that this non-profit has been doing.

Mimi Moyer P.

Volunteer

Rating: 5

This organization has been my go to for the most recent and comprehensive information on my disease. Their efforts to spread awareness about this disease has been amazing. When I was first diagnosed over 20 years ago there was no information to be found. Because of their efforts the medical community is engaged in learning more about FMD! They have so much user friendly information on their website, and are always available to those affected by this disease. The annual conferences that they host in Ohio is chalked full of expert speakers and an amazing place to touch base with those who have the disease. This organization is top shelf!!

Client Served

Rating: 5

There is nothing scarier than being diagnosed with a rare disease in an emergency situation. I was blessed to be in the care of knowledgeable, up to date progressive doctors for a quick diagnosis, but not too much further information. That's where this amazing non profit helped! I read all the info and read much more at ease with what i can do to help myself.

Jordan P.1

Volunteer

Rating: 5

FMDSA is a great nonprofit. The foundation of the organization is successful due to extended research and devotion. I attended the Annual meeting in Cleveland and was impressed and intrigued by the findings the doctors have accumulated over the years.

Cindy B.8

Volunteer

Rating: 5

I was diagnosed early 2018. FMDSA has been an invaluable tool for myself and for necessary information on resources available to all FMD patients.

Review from Guidestar

Client Served

Rating: 5

After my FMD was diagnosed, as an incidental finding following a mimi-stroke, none of the doctors I went to knew what to do about it. Some said it was nothing, others that there was nothing I could do about it. When I found FMDSA online, I learned which hospitals and doctors were researching it--all very prominent institutions--as well as all about the disease and the ongoing research. Plus I can communicate with others who have it. Now I am being monitored by doctors at Mount Sinai Hospital in New York, where there is a FMDSA research center, and I hear daily about concerns and research updates from FMDSA. Finally there is a research organization and repository of information and referrals for this rare (or maybe not so rare, it turns out) disease.

1

Client Served

Rating: 5

I was diagnosed with Fibromuscular Dysplasia this past September. I attended my first FMDSA conference in May and was amazed and so impressed by the dedication to educate patients and healthcare professionals as well as finding out more about this disease. Thank you for connecting me with others who also have this disease and FINALLY putting a name to my symptoms.

Tori R.

Board Member

Rating: 5

the FMDSA is an amazing organization all around. It is especially unique in their efforts and abilities to not only bring the professional medical community together, but to also include patients and supporting members in discussions and events. The FMD community is truly a magnificent one, but it would not be possible without the aid and organization of the FMDSA.

Client Served

Rating: 5

When I was diagnosed with Renal FMD it took several years and numerous physicians to finally get the diagnosis. If it was not for a former Cleveland Clinic nephrologist that had examined me, I feel I still would be waiting on a diagnosis. She recognized it right away and told me to head to Cleveland Clinic where they are experts with this disease and could confirm her suspicions. I had no idea what it was. All I knew is I had suffered severe headaches, flank pain and uncontrollable blood pressure. It was determined I had renal blockages and went through an ablation to clear them. Afterwards my blood pressure came back to normal, headaches and flank pain ceased. There are so many physicians and hospitals who are unaware of this disease still. Through the efforts of Cleveland Clinic and this website (Pam Mace) the information is getting out there to people just like me who had no idea this disease existed. The website told me of possible treatments, what are the symptoms, different types and outcomes. We still need to educate as many people as we can and that cost money. Please consider donating to keep this website, awareness and research alive. It is critical if we are to find more treatment options and or a cure. If it was not for this website I would have been so lost. I am thankful also because it let me know I do no suffer alone. My best advice is to never give up on what your body is telling you. You know when something does not feel right. Always go with your gut. You are your own advocate in the healthcare field. Keep searching and fighting until you find answers you seek even if it means talking with several physicians and or hospitals. Whatever it takes until someone listens as I did.

1 Kirby S.

Volunteer

Rating: 5

I've been volunteering with FMDSA for over a year now and truly admire the dedication of Pam Mace to the cause. She has a passion for the patients diagnosed with FMD and has committed a majority of her life to helping people gain more knowledge and get plugged in with a community familiar with FMD. I personally do not have FMD, but I cannot imagine finding out you have a disease that few people know about and even fewer doctors know how to treat. With every step forward, we all help bring FMD into more conversations around the world. It's an honor to volunteer at this amazing organization and know that my little contribution is helping people find comfort and answers.

1

Volunteer

Rating: 5

When I was diagnosed in 2008 with FMD, I found FMDSA online and they were a wealth of information. It has been wonderful to have somewhere to go for questions about this illness and it is great to connect with others that have FMD. Very thankful for the FMD registry and the continued research.

2 Tracy H.1

Client Served

Rating: 5

My name is Tracy Hladik and I was diagnosed with FMD at 40 years old. I am married, have 2 sons and work in the medical field. I have suffered from headaches all my life. I was put on blood pressure medication when I was in my 30's. I have been in and out of ER's for pain management of debilitating headaches that often lasted for days. But one headache, neck ache that started back in April 2010 was one to change my life forever. My primary doctor sent me to the local ER for head and neck pain that was not responding to any pain medication. This headache was worse and different from others. I had some weird "wooshing" sound in my ears too. I could not bend my chin to my chest. Labs were done, all negative. CT scan for the most part was OK, except for a colloid cyst that I knew was there from previous scans over the years. The hospital released me and I was sent home on pain meds. They advised if symptoms worsened to go to a hospital that was staffed with a neurosurgeon to rule out that the cyst was not causing problems.
Within 24 hours I was back at a bigger hospital by my home where they admitted me for pain management. After 48 hours later, with no relief from the head and neck pain, they performed additional MRI, CT's of cervical spine, head which showed right carotid artery disease or occlusion and left cervical internal carotid artery dissection. Things started moving fast then. An Interventional radiologist was called in and advised an angiogram. Since I was in such pain for days, my husband and I agreed to do the procedure to help find out what was going on. On my second angiogram for the week long hospital stay, the MD placed a large stent in my right internal carotid artery. When I asked the doctors as to why or how my carotid arteries would dissect and occlude, they said it could be trauma or something called FMD. I did not have any recent trauma. He did not think it was FMD because there was no string of pearls in my carotid arteries. He said probably just a "fluke" thing and sent me home. But I wanted more answers so I made an appointment with a specialist at a big University hospital in Chicago. I remember my husband and I sitting in room with a medical resident going over my case. The resident left and in walks in the vascular specialist. The first thing the specialist says to me is "why did you let them put a stent in your carotid artery?" He went on to say that is typically not how you treat dissections. I remember being so mad, so scared at that point. He ordered some scans of my renal arteries and it was there they found the beading. So it was at this time I was told I have FMD. The MD suggested putting a stent in my renal arteries. I was so confused. I went home and researched everything about FMD. All reputable articles came back to Dr. Heather Gornik at Cleveland Clinic. I sent my records to Dr. Gornik, had an appointment shortly after that and I am now so relieved to be in her care.

It is apparent now that the health professionals I saw never considered FMD. Even with me complaining of "wooshing" in the ears they did not think twice about that symptom. There are still many of occasions that I have to educate some of my medical professionals about what FMD is. I feel it still is such a rare disease that many primary care physicians or internal medicine doctors are not considering it as a patient diagnosis as early as they should be.

Dr. Gornik at Cleveland Clinic and the FMDSA web sight have been such a big part of my recovery. I make a trip to Cleveland Clinic yearly for scans and exams because it is there where I am getting top notch care. FMD has it's limitations but having the knowledge about how to manage the disease is priceless. I thank all of the providers who do their research and care in this diesease. We need you and appreciate your expertise.

Barbara E.1

Client Served

Rating: 4

I would like to begin by saying I am thrilled to have found you!. A diagnosis of FMD is terrifying at first. For the past two years I have experienced a NEW type of chronic headache, tinnitus, pulsatile tinnitus, dizziness and neck and shoulder pain. My FMD diagnosis was discovered by accident, after a wonderful orthopedic surgeon reviewed some recent MRI's from a few months ago and said "generally there is a cause and effect and it usually starts at the top." He ordered more MRI's, MRA of my head and neck and CTA of my head and neck, and CT of my neck. Guess what? It revealed FMD.
I live in Las Vegas, where the healthcare does not compare to that of the Northeast part of the county, or Califiornia. I am desperate for knowledge about FMD. I was intitally disappointed that some of your articles as well as information on YouTube is dated, however, I was thrilled to find information today from your recent event at Emory. I also learned from your website about the relationship between Spine issues and FMD, and autoimmune disease. What I cannot find is if you can become a part of the registry without visiting one of the physicians listed. There is literally no one in this part of the country. I would like to try to lobby a physician in my town to become a part of this. THANK YOU FOR BEING HERE FOR ME. PLEASE SEND ME RESOURCES and let me know what I can do to spread the word. I am a retired Healthcare Administrator. I have managed both hospital based and private practice groups; Neurology, orthopedic, General Surgery, Opthalmology, ENT, Internal Medicine, Family Medicine and OBGYN practices. I have good days and bad days and want to learn all that I can and help grow awareness of FMD. Thank you for being here. I would LOVE to go to Atlanta, but not sure I can put together the funding. I have never done a gofundme, but maybe that is what I should do.
After a visit with my neurologist I insisted I wanted to be seen by a Vascular MD. He opted to refer me to an Interventional Radiologist. He confirmed my diagnosis of FMD and said it affected both my Vertebral and internal Carotid Ariteries. He also said I have had it for a long time. I have complicated degenerative disc disease, a tumor at c2-3 which has bony erosion and abuts the left Vertebral artery, this was also discovered, by accident, in 2002, and Systemic Lupus Erythematosis which was discovered in 2008. As expected I have a myriad of other issues, including migraines since the age of 17, and pain. I