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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

82 Stories from Volunteers, Donors & Supporters

Board Member

Rating: 5

I first got in touch with the FMDSA in 2007 when I was initially diagnosed. Over the years it's been amazing to see how much they've grown, and how the registry has resulted in so much research. The FMDSA is predominantly made up of volunteers who accomplish great things. The doctors involved are wonderful and really care about the patients and finding out more about FMD. The FMDSA Medical Advisory Board includes some of the world's top experts on FMD. Pam Mace, the executive director, has dedicated most of her adult life to helping patients, spreading awareness, and facilitating introductions between medical professionals around the globe. So much has been learned about FMD from the patient registry that the FMDSA began in 2007. Back then there was no research and just over ten years later, so much has been learned and continues to be learned about FMD. I'm in awe of how far we've come and look forward to where we'll be in terms of knowledge about the diagnosis and treatment of FMD in another ten years.

General Member of the Public

Rating: 5

THE FMDSA WEBSITE IS A WONDERFUL RESOURCE FOR MY FRIEND. I KNOW SHE HAS LEARNED A GREAT DEAL ABOUT HER DISEASE AND THE SUPPORT RECEIVED HAS MADE A DIFFERENCE.

Donor

Rating: 5

Without FMDSA my local doctors would be lost and so would I !!!! My FMD specialist is located 6 hours away and nobody in my local area knows anything about it. FMDSA has sources that allowed my primary physician to understand what I was diagnosed with. Personally, it has allowed me to connect with other people with this rare disease. It has allowed me to a gain a better understanding of the disease and how it ties to other conditions I have. It serves as the go to for all FMD patients and we would be lost without them!

Client Served

Rating: 5

FMDSA was such a godsend when I was first diagnosed with FMD 8 years ago. The quality of the organization's services continues to bring research information about this complex disease. But there is so much more to learn about it! I am so grateful for FMDSA!

Mimi Moyer P.

Client Served

Rating: 5

What a supportive, informative organization. Luckily for those diagnosed in recent years FMDSA is a wonderful resource. Prior to the inception of this great organization there were no resources available Their website is chalked full of up to date medical articles,
additionally if one is looking for a doctor familiar with FMD, the FMDSA website lists the multiple Registry sites one can be seen across the US.

The organization is stellar on member support. With active social media presence it is easy for recently diagnosed patients to connect with others who have FMD. Pam Mace who is the Executive Director has always made herself available to those that reach out. Multiple volunteers round out this organization offering guidance and support which is invaluable to those dealing with recent diagnosis.

FMDSA is hands down a GREAT nonprofit!

Previous Stories

Volunteer

Rating: 5

I have been a member of FMDSA since it's inception. The amount of awareness and research they have been instrumental in providing is amazing. From educating doctors via grand rounds, to medical conferences through out the country, awareness on all platforms of media, patient meetings, web chats, global education and annual patient meeting, they have done more then any other organization to help those with FMD. FMDSA is the go to sourse for those recently diagnosed, and a great source of comfort for those that are veterans of this disease.
Thank you to all the present and past volunteers, the board and medical advisors , and most especially to Pam Mace Executive Director and Hero.

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1

Donor

Rating: 5

As an individual with FMD, I have had carotid and vertebral dissections as well as two dissections that caused MI's. I don't know what I would have done without FMDSA. The organization has been instrumental in helping me through the maze of confusion FMD causes. The information provided helped me immensely and the support of fellow FMD'ers, that I met through this organization, helped me get through some really tough times. The research that is being done around FMD is a direct result of all the effort the organization has put into raising awareness. Kudos to FMDSA.

1 Ginny E.2

Board Member

Rating: 5

Since there is presently no known cause or cure FMD (Fibromuscular Dysplasia) FMDSA has worked to unite physicians, clinicians and researchers with an interest in FMD throughout the world and assisted in the development of an International FMD research network. May 2014 was the first international FMD Research Symposium. Since then, FMD terminology and definitions have been harmonized, so that data is consistent as evaluated.

FMDSA-funded Patient Registry now includes 17 registry centers in the U. S. with almost 3000 patients enrolled. The registry has been a valuable tool for medical research, furthering our effort to improve diagnosis and treatment.

FMDSA reaches out to patients with various social media connections, including an active website, a Facebook page, Inspire and Twitter to name a few.

On a personal level, our Executive Director exudes positive energy, inspiring patients, physicians, clinicians, and researchers with her hope for a better future for FMD patients. She personally handles as many new patient calls as she can, and is a calming source of information for newly diagnosed patients, who are often frightened by a rare disease diagnosis. I was one, and she made me feel like I had people and an organization that had my back.

I recently became a Board Member because I want to give back to other patients, and help the organization to achieve our vision:
1. Researchers will identify a cause or causes, and develop a cure and/or effective treatment(s) for FMD and FMD-related diseases.
2. Medical professionals and health care workers everywhere will be knowledgeable about FMD, resulting in rapid diagnosis and treatment, thereby minimizing FMD-related strokes, heart attacks, and complications.
3. FMD patients will live full healthy lives with minimal FMD-related complications.

I cannot say enough positive about this organization!

gratefulclientoverseas

Volunteer

Rating: 5

Thank you FMDSA, your tireless work to improve knowledge of FMD through the research registry, physician and patient education is appreciated by patients and other FMD and SCAD patient organisations worldwide.
You are a leading light, that can be relied on for accurate and up to date information to help those searching for support, more information, a knowledgeable physician or centre, or to take part in research. It’s greatly appreciated that you attend scientific and medical conferences to advocate for our community and always share any new findings as they are published.
#fmdawareness #fmdstrong #facesoffmd

Previous Stories
2

Client Served

Rating: 5

FMDSA was there from the beginning of my FMD journey which started two years ago.
Lots of up to date information, great support and dedicated volunteers.
In a world that expects to find information instantly available the FMDSA helps collect together all the latest information and research findings, as well as connecting people linked by Fibromuscular Dysplasia.
The annual patient meeting is amazing, a big thanks to everyone involved in the organisation - you really provide a great service that serves FMD patients worldwide.

Client Served

Rating: 5

I was diagnosed with FMD in 2015 after two spontaneous coronary artery dissections (SCADs) in 2012. I didn't know anything about FMD, but heard about FMDSA from a fellow SCAD survivor. FMDSA is such a great resource, not only for newly diagnosed patients, but also patients that have had the disease a while. They truly care about helping patients and caregivers learn more about the disease and sharing knowledge among doctors. I am so glad to have met lots of great people through FMDSA and I'm glad to be a support group volunteer for them.

Carol Boissoneault R.

Volunteer

Rating: 5

I have been proud to support FMDSA since I was diagnosed in 2006. My quality of life is great and I know research generated by the registry and support from the FMD clinics is a large reason why. The annual conferences are incredibly helpful and so fun to meet others with FMD. Thank you FMDSA.

Previous Stories

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




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.

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.

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

2

Client Served

Rating: 5

This organization is helping me to navigate my diagnosis of fibromuscular dysplasia. It brings current research and treatment options to light for patients of FMD. It is a great conduit to bring other patients together that struggle with this rare disease. This nonprofit organization - Fibromuscular Dysplasia Society of America (FMDSA) is leading the way to inform the medical community that this disease exists and that patients are "real with their symptoms".

1 Lois B. M.

Client Served

Rating: 5

Until I discovered FMDSA, I had little understanding or direction from the doctors who diagnosed me with it last May. And I received much misinformation, including from one vascular specialist at a major Long Island hospital, who may only passing reference to it following a TIA. FMDSA has provided me and my family information and resources--and a connection to Mount Sinai Hospital in NYC where I am now being treated, and where I am participating in three studies to increase scientific knowledge about this maybe-not-so-rare disease.

3 Julie Ann W.

Client Served

Rating: 5

After being diagnosed with Fibromuscular Dysplasia in late 2009, I had no idea where to get more information on this disease that no one I knew had ever heard of. Thank goodness I found the webpage for the FMDSA! It was and is instrumental in helping both myself and my my family understand this rare disease. I always turn to it for the most up to date information and research. I especially appreciate the videos and print outs to show friends and family.

3 Christine M.2

Client Served

Rating: 5

Without this charity I would have no idea about this disease and how it impacts day to day living. I live in the U.K. and there is no real information or support. I used this website to educate family and friends. Thank you.

4

Volunteer

Rating: 5

An amazing organisation which offers support and education to people with fibromuscular dysplasia worldwide. FMDSA has been a life-line to me in terms of gaining up-to-date information and encouragement in my illness. The medical research studies which are being supported by FMDSA will make a huge difference to raising the profile of this rare condition and its best management for patients.

10

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!

7

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!

3 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!

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3

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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3

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.

2

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.

3

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.

2

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.

2

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.

3 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.

2 Karen434

Donor

Rating: 5

This organization has done and continues to do great work to fight FMDSA as well as raise awareness.

2

General Member of the Public

Rating: 5

FMDSA is a great resource for connecting patients, doctors, families, etc., FMD i s truly a great support system as well.

2 Cheryl143

Volunteer

Rating: 5

FMDSA was the very first resource I found when I was diagnosed 12 years ago. Thanks to the guidance provided through FMDSA, with all the available Tools & patient information, Not only was I able to understand my own illness better but it also helped my treating Physicians. Upon being diagnosed I joined this organization as a volunteer and I have met so many interesting patients along the way who are just like me. That in itself is such a great support. Under the expert leadership of Pam Mace this organization has founded an international patient registry as well as several FMD clinics. Without these resources so many of us would be lost.

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5

Volunteer

Rating: 5

I was diagnosed with FMD in 2004 on a routine exam. The nurse practitioner noticed I had bruits in my carotid arteries and, as one thing led to another, following an angiogram, I was diagnosed with FMD in 9 different arteries. I had a left internal carotid artery aneurysm at the time. Being in the medical field most of my life, the clerical aspects of it, I had never heard of fibromuscular dysplasia so I started researching on the internet and, through a yahoo chat group I was directed to the FMDSA. I can't say enough about how much finding the FMDSA and meeting Pam Mace means to me still to this day, and how much it did for me, finding someone who knew what I was going through because she went through it and still was also, and an organization that was out there raising awareness so early in my diagnosis. I am a volunteer and I've been a board member for several years. Since being diagnosed I've had 1 aneurysm coiled and I still have two others but I am forever grateful for the research, thanks to FMDSA funding The Patient Registry, and the awareness that they have provided by attending the different conferences everywhere and meeting with doctors and Pam Mace putting herself out there on the line every single day... she literally eats, sleeps, breathes and bleeds FMDSA. For Pam's unselfish efforts we are all thankful. FMDSA has an annual conference in Cleveland every year, and if you are able to attend you walk away with so much more knowledge, but even more than that, such a sense of knowing that you're not alone. Its very scary when you go to a doctor and their response to hearing you have FMD is "you scare me, I don't know what to do with somebody who has your disease". 11 years ago I heard that...today I don't hear that as much anymore & I know that is because of all of the efforts of the FMDSA!

2

General Member of the Public

Rating: 5

FMDSA has been the best resource to find current information about my vascular condition. They have a conference every year, connecting patients and doctors. They do great work.

1

Client Served

Rating: 5

FMDSA has helped out a great amount. I was diagnosed with FMD after having a T.I.A. And saw my Carotid Artery on the MRI. I was scared because I had never heard of FMA before. Once out of the hospital I came looking for help, trying to find out more information. What the symptoms were, if it was common, if they knew what caused it, and if there was some type of cure or anything that could help. And that's where FMDSA came it. It helped alot, letting me know that there were others like me who knew and understood what I was going through. That I was not alone. And helped educate me. Thank you PAM MACE, and thank you FMDSA for everything

2

Client Served

Rating: 5

Very informative understanding staff along with excellent resources,this organization helped me find out more about the medical condition I have than any other way searching for answers to questions about fibromuscular dysplasia. Positive encouragement during a very dark time in my life.

3

General Member of the Public

Rating: 5

I have attended several of the annual meetings and learned so much. The speakers are great and topics interesting. I also enjoyed meeting people from all over the USA. I look forward to this year's meeting in Cleveland on May 14 2015. Thank you for for all you do. I was surprised to find some people to be very judgemental so I would like to end by quoting one of my favorite bible verses. "For with the judgement you pronounce you will be judged, and with the measure you use it will be measured to you" Matthew 7:2 God Bless you all.

1 Kellie3

Volunteer

Rating: 5

As a former Board member for FMDSA I would like to praise the dedication, motivation and willingness of this group to bring this disease into the mainstream of the medical community. I do not have this disease but I felt a strong connection to volunteer my time. As a medical social worker with 30 years of experience I have had the pleasure of volunteering for several organizations. When I think back to some of these non-profits I realize FMDSA has done so much with so little. I've met people with so little free time volunteer as best as they could. I've met people with so little money give the most they could. So I want to talk a moment to thank the Board members past and present, the volunteers I ' ve met, the patients and the Executive Director for her tireless commitment to this organization. Look how far FMDSA has come!

2

Volunteer

Rating: 5

I am confident I would not be as knowledgeable about my FMD without the excellent services of FMDSA. The organization is deliberate in reaching out to newly diagnosed patients as well as keeping up to date with research findings and communicating those to all its members. I have been involved in a lot of non-profits over many years and FMDSA ranks highest due to its dedication and genuine compassion to its members.

2

Client Served

Rating: 5

In 2006 I was diagnosed with FMD of the renal arteries and has angioplasty three times in two years with a dissection of the right renal artery that was stented. In 2008 I started attending the FMDSA conferences and can't say enough about the support and valuable information that has been provided for many years. It is so important to help FMDSA continue to support research to find the answers we are all praying for.

1

Board Member

Rating: 5

The FMDSA is truly a beacon of hope for individuals diagnosed with fibromuscular dysplasia. Pam Mace, the Executive Director, has nurtured this nonprofit with class and grace. Her recognition in the Rare Disease world is proof of her genuine gift and passion for helping others with fibromuscular dysplasia. I was diagnosed with FMD in 2002 at the University of Virginia. In 2007, after a terrible event with fibromuscular dysplasia I called the FMDSA for guidance and help. It was Pam Mace that called me back. I will never forget that call. Long story short - I have been to every FMDSA Annual meeting in Cleveland from the first in 2008, the University of Virginia is a participating registry center for the FMDSA Patient Registry (1,300 current patient participants) and I am proud of all the published articles and research we continue to see on fibromuscular dysplasia. As an active volunteer with the FMDSA, my hope is that all physicians will be aware of fibromuscular dysplasia, protocols for management will be established and the future generation will not ever feel the fear and confusion with a diagnosis of fibromuscular dysplasia.

2

Volunteer

Rating: 5

I am a patient and volunteer for FMDSA. This organization is vital for FMD patients. FMDSA funds research and supports and educates patients. I look forward to going to the annual conference every year and seeing other people who understand what I have been through or may be going through with my health. I would like to give a special thank you to Pam Mace for all of her hard work and dedication to this organization.

4

Volunteer

Rating: 5

I am grateful to the FMDSA for helping me when I was first diagnosed in 2004. My Mom and I both have it and the support and friendships made through the organization are priceless. If it weren't for Pam Mace and the FMDSA research and yearly conferences would never have happened and all the physicians, geneticists and others are more aware of our disease, its complications, and hopefully working towards a cure. Knowing people like Pam Mace who is so dedicated to educating and attending conferences and spreading the word is so important to our cause for awareness. Thank you for a job well done, love the FMDSA.

Previous Stories
2

Volunteer

Rating: 5

My Mom and I are both patients with FMD in both carotids and brain and were diagnosed in 2004 when the only thing on the internet was FMD results in early death. Thanks to FMDSA back in 2004 we were able to obtain lists of questions to ask our physicians and realize this is something that you can live with. We are truly grateful to everyone involved in this organization and know that there are so many physicians, researchers and geneticists who care enough to want to help us. Without FMDSA we would not be where we are today. We are known worldwide and research is constantly growing. We need to obtain more funding for our registry and research. Everyone involved can help, even small donations are appreciated. If we all went to our local TV and radio stations, hospitals, etc. and printed out brochures for them, we can get more attention. Even small fundraisers in our communities could help. Many of us like myself have other connective tissue disorders like Marfans, Ehlers Danlos, Sjogrens, etc. Hopefully in the near future we will have answers and together we can help achieve our goals.

4

Client Served

Rating: 1

In late 2011, I was awakened in the middle of the night with a headache that had me trying to rip my head from my shoulders when I'd never had headaches before. I felt sick and could not imagine the source of the headache. Afterwards, I continued having neurological and TIA-like symptoms which sent me to the ER. It was then I was diagnosed with FMD of both upper internal carotid arteries. The local doctors at that time did not seem to be familiar with FMD so I found the FMDSA page and made an appointment with one of its listed registry clinics - which was one of five at that time. I traveled 3-1/2 hours to this hospital only to be told that my neurological type symptoms were anxiety or "in my head". This said in front of my husband as the initial visit created a lot of issues in my marriage as my husband "trusted" the "expert". When I kept asking to be put on the FMD registry, the doctors and staff gave me "deer in the headlights". No additional tests or studies were run other than a second appointment for ultrasound which warranted a second trip - this time without the support of my husband. I had hoped the ultrasound would include the renal arteries as I was dealing with blood pressure spikes, but alas, they only rechecked the carotids. Again, when I asked what I needed to do to get on the Registry, no one seemed to have even heard of it, altho the second doctor's notes comment that I inquired - but no action. I called this to the attention of FMDSA which responded that the Registry was not operational at that time at that hospital and to call the research department and make inquiry. This made me question the doctor's training or knowledge. I believe it was actually his predecessor who had a handle on it. Despite the fact that an FMDSA representative shortly after made a trip to that city to a medical convention, there were no meetings to my knowledge with the "specialist" or hospital while in town to get this issue resolved. Frustrated and wrought with problems arising in my marriage due to my diagnosis of "anxiety", I gave up communicating with FMDSA about the Registry and there were so apologies to or follow up with me. Ironically, the doctor who saw me has his name on the registry results but it's not clear to me what was contributed since there was no awareness of the registry during my visit and I was told it was non-operational at that facility. Today my BP is spiking from normal to 188/125 within minutes and I still have no answers.

3

Donor

Rating: 5

After my wife was diagnosed with FMD and 2 dissected carotids, we reached out to FMDSA for more information. Pam has been there for us every step of the way with advice and support. My wife has also met others with FMD, and has attended one of the annual conferences. All of the information & support, has made it a much less scary for our family.

Review from Guidestar

2

Volunteer

Rating: 5

After my rare disease diagnosis I felt scared and alone. I searched FMD on the internet and discovered the patient centered organization FMDSA. Within a short amount of time after contacting the organization the exec. director replied to my email. She was very friendly and knowledgeable about the disease. She invited me to attend the FMDSA annual conference in Cleveland. There I met the director, some of the board members and connected with other fmd patients. It was a life changing experience for me. The FMDSA works very closely with respected healthcare facilities such as the Cleveland Clinic, Mayo Clinic, Mount Sinai and several others worldwide. The board has managed patient donated funds to support a patient registry for several years and works closely with the University of Michigan Research Dept. This registry has lead to several published articles in medical journals.

3

Volunteer

Rating: 5

The FMDSA has been a huge help and comfort for my family. They go above and beyond to raise awareness, continue research, as well as reach out to those dealing with Fibromuscular Dysplasia. I am so thankful for this organization.

Review from Guidestar

3 Gina47

Client Served

Rating: 5

I was diagnosed with two carotid dissections in 2009 - my local Dr. suspected FMD - but was not an expert. I was sent to a research hospital in my home town, but they wanted to do some invasive testing that I was uncomfortable with. I started researching online and found FMDSA. It was a true blessing for me to find this organization. They helped connect me with expert Dr's that were able to give my local doctors direction with my care. This organization helped me find support - they connected me to other women who had been dealing with the same issues I had. I was very scared at the beginning of all this, and these women gave me so much comfort, I can't even begin to thank them. Finally I was able to get to the FMDSA conference in Cleveland, that was a true turning point for me. The information was amazing, finding out about all the research and how far they've come was inspiring. And the love and support of all the other patients was so upbuilding. FMDSA is truly a valuable resource and I would have not had any help with a scary unfamiliar diagnosis if they had not been there for me.

Review from Guidestar

3

Client Served

Rating: 5

I am from the UK and was diagnosed with FMD in 2009. I am also a medical professional. At diagnosis, my hospital consultants told me that the condition was rare and then referred me to the FMDSA web-site saying that this was the best source of information on the condition. I got in touch with Pam Mace who was extremely supportive, and i was enabled, through FMDSA, to tap into a small but supportive network of fellow sufferers in the UK.
My consultants still refer to the FMDSA site as their source of information and my family doctors also rely on the site for information and updates. I am unable to travel the distance to see the specialists in the USA or to participate in the annual conferences and the like, but I fully commend the FMDSA as an excellent source of information and support and also as a progressive charitable body which is encouraging and enabling further research into FMD.
I gladly contribute financially from the UK to this worthy organisation which continues to offer so much to patients and medical professionals world-wide. Without the FMDSA I would feel very isolated, uninformed and therefore scared with this condition. Also many medical professionals would remain uninformed about the condition. This organisation (and the people who run it) is a wonderful and vital resource. The commitment , enthusiasm and energy of Pam Mace and many others to FMDSA is outstanding. I have been extremely well cared for by FMDSA -despite the miles- from my very first contact with the organisation.

4

Client Served

Rating: 1

FMDSA lacks accountability, transparency and leadership. I recommend reviewing the 990's as to where donations have been allocated. Monies were given for research in another country with no results or updates as promised to patients. Many funds were used for travel expenses and conference to increase awareness , unfortunately the conferences that were attended where the same conferences year after year: vascular and stroke which resulted in educating physicians whom are already aware of FMD. There is no formal way that this organization handles complaints. Breach of confidentiality has not been addressed within the organization. The Board needs to hold the Executive Director accountable.

Review from Guidestar

3

Client Served

Rating: 1

As of 10-29-2013 FMDSA has not posted it's 2012 financial report 9090 on it's public web page.

Review from Guidestar

2

Donor

Rating: 5

I would like to take this opportunity to help spread the word about the wonderful work being done by FMDSA. This organization has, for many years, been a consistently reliable and available source for information, support and encouragement for FMD patients and their families.

From its inception, FMD has been instrumental in helping to bring the medical community together to fight this disease. FMDSA initiated an annual conference, where doctors from around the world meet to speak to FMD patients about the latest information available. FMDSA visits hospitals to share this information with doctors and leave pamphlets for patients. FMDSA promotes, through visits, the exchange of such information with the international medical community. FMDSA has created a national registry of patients, which is vital to research into this disease. Such work has immense value and FMDSA continues to look for ways to expand the scope of their help.

On a more personal level, FMDSA brings hope and comfort to patients and families, who are struggling with this disease. FMDSA support is there from the beginning, when a diagnosis brings a frantic search for information, to matching a newly-diagnosed patient to one who has travelled the road, to giving patients and their families a resource that they can trust. As the sister of one with FMDSA, I am forever grateful.