FMDSA

After my Fibromuscular Dysplasia diagnosis I was scared and felt so alone. When I found FMDSA, it changed my life. I found a safe space where my questions were validated and answered. There were no stupid questions. Newsletters provide ongoing information covering new studies, and worldwide recognition of this disease. A FMDSA created Facebook page provides something we all need, a tribe. The members “get it” when someone shares a concern. If someone mentions a new symptom, reading “Me too” is more comforting than words can describe. Through the work of FMDSA I have made friends who I deeply care about and who care about me. The work FMDSA has done has made significant positive changes in my life. Are there still days I am afraid of this disease and my future? Yes. But since finding FMDSA, when I am struggling, I know right where to turn to feel grounded….FMDSA. I thank them for all they do for all of us. Marsha

FMDSA has been my only true source of information about this diagnosis. Receiving a personal welcome and someone at FMDSA to answer questions and provide me with resources has been invaluable. The information on their website was what I turned to first. The help I got from FMDSA turned an unknown and scary diagnosis into something not so scary and provided a way for me to learn and gain some control, and know how to speak to my doctors about best practices/treatment.

I’ve been a volunteer for the FMDSA for almost 20yrs and so I know firsthand how much effort we put into supporting patients, spreading awareness, and facilitating research. When I was first diagnosed it was the FMDSA who helped me to find appropriate care and to guide and support me. FMD pts would be at a great disadvantage if the FMDSA didn’t exist. A+++++

I was diagnosed in 2008, during a routine physical when my doctor heard a bruit in my neck. I was sent to just a regular vascular surgeon, who upon recognition of significantly decreased blood flow, performed an endarterectomy. Much to my dismay, my carotid become totally occluded as a result. Thereafter, I began researching more information on FMD through our favorite doctor, the 'internet'. I attended my first FMDSA conference in 2013 and found such wonderful caring supporters, board members, doctors, and other FMD patients to learn from. The help that this organization offers is immeasureable and you realize 'you are not alone'. I have learned that I am one of the lucky ones without any major problems related to FMD. I know to keep my condition monitored and in check, and follow up with FMD specialists. From going through feelings of a 'walking timebomb' to the present, they provide first hand, real life knowledge that carries many of us through day by day, and are always there to help. The research that continues every day is so vital, and supported by this ever growing community and respective medical fields to help spread the word about what FMD really is and how to deal with it. Many many thanks to our leader Pam at national/international levels, and Rosie even at the state level for providing platforms to carry on the mission of FMDSA.

FMDSA helped me to return to being a PERSON not just a PATIENT after my Superior Mesenteric Artery tear. They are a stellar organization sharing accurate information, advocating for patients, increasing awareness of the disease, and helping do meaningful research that benefits real people.

Yay for FMDSA!

DeDe
Crandall IN

Since my diagnosis of FMD in January of 2022, FMDSA has been instrumental in every way to help me get the proper information about my disease, the best care facilities, and has helped create many friendships with others in similar situations as me. I cannot speak highly enough about this non-profit organization, Pam Mace, and all other volunteers that are doing great work in educating people about Fibromuscular Dysplasia.
Sincerely,
Tracey Punzone

I was diagnosed in 2023 with FMD of both the Internal Carotid Arteries. My only symptom was a piercing pain in my head that lasted about half a minute and subsequent periodic head pain and headaches. I am so grateful my family physician sent me to a neurologist who then ordered CT scans. I am also grateful the radiologist knew about FMD to make the diagnosis. My care journey seems to be the exception to many patient stories. Too many people are not getting scanned, diagnosed or treated properly.
The FMDSA had been a wealth of trustworthy information and an important link to doctors, researchers, research, fundraising and a crucial connection to other FMD patients.
The many doctors, and dedicated and compassionate volunteers make the FMDSA the best resource to advocate and educate the medical communities, patients and the general public about Fibromuscular Dysplasia.
I appreciate the excellent support from the FMDSA.

The FMDSA has been instrumental in helping myself and my wife have a better understanding and availability to resources to help with the unexpected and challenging diagnosis of FMD. The website allowed us to make contact with a local FMD specialist, place my wife in the registry for better understanding, and she is now participating in research initiatives that will help to find and treat FMD. The organization is growing and making strides in the medical community to bring awareness and education. My wife and myself have attending the online education forums and participating in volunteer initiatives. Without this organization we would be in the dark about FMD. At her time of diagnosis none of the physicians knew what it was but they encouraged us to research and we found the FMDSA. We are forever grateful for the resources and connections we have made.

Pam and the FMDSA have been an incredible organization to work with and provide invaluable resources as a patient. The FMDSA is dedicated to making a difference in how we treat, diagnose, recognize, and understand FMD! The organization's commitment to helping patients with access to care and providing vital education is truly inspiring. It's amazing to see such dedication to improving our understanding of FMD. The organization assists in the sponsorship of the national registry, which is the best way for clinicians to communicate and work together to treat FMD.

When I was first diagnosed with FMD, this organization was a ‘godsend’! I read all the factual, science based information which was easy to access on the well designed website. Coming from a career in healthcare, I was impressed with the level of professionalism displayed by staff and volunteers as represented in the articles, stories and posts. I also contacted the ED with questions, not really expecting a response but being an optimist, gave it a try. Pam Mace herself responded and was so incredibly helpful and knowledgeable not to mention kind. I continue to utilize this organization as my main resource for updates, education and information relating to FMD.

This agency has brought so much awareness to the public and has done amazing things, from raising money to continue researching this rare disease, to saving lives daily.

I commend all those who are founders, representatives, medical, staff and any who have given their time and/or money to help it succeed and grow.

I call them my FMDSA family! This dedicated and tireless group has helped me so much! I was feeling alone and honestly hopeless, but the crew at FMDSA has answered sooo many questions, connected me with resources and really been there for me. I can't say enough good about them!

Very knowledgeable , Very helpful
Everyone I have dealt with in FMDSA has gone above and beyond.

I was diagnosed with FMD in 2004. Feeling lost and alone and scared, I searched the internet and found FMDSA, and Pam-Mace. What a comfort. It was meeting somebody else with my disease and knowing there was an organization out there willing to do the research necessary to help find a cause and maybe one day a cure for this disease. Since my diagnosis, I have volunteered in several capacities with FMDSA both on the board of directors as well as in the background and I continue to volunteer to this day. I am grateful to all the volunteers who work so hard in this organization but especially to Pam-Mace who has given of herself unconditionally. I have 11 arteries that are diseased, I have suffered a TIA and had one aneurysm coiled, but each day I live life to its fullest and as I like to say I run faster and jump higher, thanks in great part to the educational information provided to my physicians enabling me to live a normal life.

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.

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.

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!

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!

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!

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.

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.

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.

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!

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.

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

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.

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.

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.

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.

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.

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

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.

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.

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.

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.

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.

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

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".

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.

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.

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.

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.

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!

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!

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.

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.

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.

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.

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.

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.

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

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

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.

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.

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

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.

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.

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!

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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

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.

On January the 17th 2010 my then 14 year old grandson had a large right frontal lobe stroke that left him with no use of his left arm,foot, or ankle. Sadly because he was such a young age no one thought that it could be a stroke. As I nurse it was apparent to me and his family that this was what was happening; however it was not finally diagnosed till over 24 hours that this was the diagnosos.

To make a very long story as short as possible, after the cta angiogram was done the radiologist came out looking very sad and informed his mother and I that Jeffrey had a stroke due to FMD. As a nurse this was not something that I was familiar with, but after much research we were able to get in touch with Pam Mace who works with FMD. She was instrumental in the help and support that she gave us. Pam assited the doctors taking care of our Jeffrey by having the team of doctors she works with review all of Jeffrey's test results, confirming that he did in fact have FMD and that a third of the vessels in the right side of his brain were affected.

We had the honor of meeting with Pam and there is not enough that we can say about the care, support, and love that she showed us. Almost four years later, she keeps in touch to see about the progress my grandson has made. This was a very hard time for us, but having Pam there with us, certainly helped to guide us in how to handle all of it. We are grateful for the foundation and wish more people were aware of this and how it can affect one's life. Thank you Pam and the FMD foundataion for all that you do. We would of had a very difficult time dealing with this without your help. Most Sincerely, Jamie Cribb

I was diagnosed with FMD 2010. I experienced unexplained VERY high blood pressure. After being scheduled for an MRI, the results showed I had Renal FMD and 2 aneurisms. I was scheduled to have angioplasties placed in my renal arteries and they clipped one of my aneurisms (splenetic aneurism).

When I was scheduled with a specialist, I was informed of the nonprofit organization, FMDSA (Fibro Muscular Dysplasia Society of America). When I contacted this nonprofit organization I made plans to meet the Executive Director to talk more about this disease.

After the meeting with the ED, I decided to volunteer to bring others together who have this disease. I now volunteer as a “Support Group Volunteer” located in the Twin Cities (Minnesota). The group has helped us share and understand this disease. We talk about specialists in our area and refer people who attend the meetings.

I believe there are many more people with this disease that have not been diagnosed because Doctors do not know about this disease. I have been in the emergency room 12 times during 2013. I have yet to meet an ER Doctor who has heard about this disease! My goal is to educate the local medical community and raise more money to help FMDSA continue to fund this nonprofit so they can educate, support those with FMD, support medical communities, pay for the registry that collects information on patients with FMD and support the Annual Meeting.

I started a nonprofit in Minnesota for ALS back in 1994. I know if you cannot find the financial support for the nonprofit, the nonprofit cannot help support their members with FMD, family and friends. The Executive Director is the life line of the nonprofit, especially when they are the only person working to keep the nonprofit working for people who suffer from FMD.

I'm a supporter and donor. I have a friend who lives with this disease. She has been given great support by this organization. I feel good donating to an organization that is supporting her and also helping so many other women.

When I was told I had FMD of my carotids, vertebral, renal and iliac arteries several years ago, I felt alone and very frightened with my diagnosis. Fortunately, soon after I learned of FMDSA many of my fears subsided and I no longer felt alone with this disease. I can't imagine not having this wonderful and devoted team of caring people on my side. Without FMDSA we would still be in the dark. This organization continues to bring awareness, education and much needed research. However, it is a nonprofit organization and it needs member support so we can continue to receive a better diagnosis and treatment. I have chosen to support FMDSA because they do make a difference in helping to improve the quailty of my life with FMD.

I was diagnsed with FMD in my renal arteries in 2004. I soon found FMDSA on the internet and were very helpful in giving me information. A few years back I started to have some concerns dealing with the ethics of how money was being handled. They would state that all money donated went towards research. That was not the truth very little goes towards research. Another area of concern was that they changed how members of the broad were selected went from members voting to being appointed. In this I have concerns that there is no oversight and that the the person doing the appointing controls the broad members. The patrient registry is great however only a few centers are allwed to be a part thus limiting the number of patients. In order to get more accurate information more patients need to be involved. Foranother rare disease I have 50 centers and over 3,000 patients are involved. The one FMDSA does only has 12 centers and around 600 patients involved. The information that they do get from the small regisrty is very slow in being released to patients unless the patient is able to attend the conferance. Which for some members they are not able to attend.

I was diagnosed with FMD in both carotid and renal arteries in February of 2008 after a TIA and a subarachnoid hemorrhage. I was in very bad shape and one of the neuro surgeons in the hospital were I was for over ten days was the one who knew about this disease. I did some research and found FMDSA and even went to Cleveland and Cleveland Clinic seeking for help and some inside. In the beginning, before FMDSA started to grow, I was able to get answers and support but I believe that after a certain time, people involved with the organization, were self promoting and really not helping patients. I was denied basic answers and really did not get any help at all. When asking for doctors referral, I was given any doctor/neuro in my area that did not even believed in FMD or have any knowledge of the disease. In the meantime, FMDSA grew more and more with donations and I discovered that very little of that donation was truly going to research. Most of it goes to salaries, trips, promotions, etc. When I tried to ask questions about that, my posts were removed. However, these are public posts and anyone can access them. I do not believe FMDSA is a organization that truly cares for patients anymore. I was never called for any of the studies that they were suppose to be having. There are thousands of people with FMD all around the world and most of them are seeking help and support elsewhere.

My FMD journey started in 2004. I had persistent tingling in my hands and my neurologist ordered an MRI. Lucky for me, I had an obvious aneurysm. I consider myself lucky because without that aneurysm, the doctors would not have ordered further tests that confirmed not only the aneurysm but also FMD of both intracranial carotids.

Because of the commitment of FMDSA to attend conferences and work closely with medical professionals, doctors have more information about the disease resulting in new patients being diagnosed sooner. Although there are no treatments for the disease, there are treatments for symptoms and early diagnosis enables a patient to change their lifestyle to protect themselves from life threatening complications brought on by FMD.

FMDSA is funding a FMD registry that is collecting data that is being used to further study the disease. This is so encouraging to the patients and families because of the hope for treatment and possible cure or at the very least, just understanding of the disease and the symptoms.

The FMDSA conference is one of the most important aspects of the organization for me. The camaraderie between patients is uplifting and helpful when folks are feeling insecure in their health. The speakers are knowledgeable and make time for questions from the audience. In that conference room sits a tremendous amount of insight and education about FMD.

I am a renal FMD patient and FMDSA Volunteer. I was diagnosed with FMD in 2004 and have had renal bypass surgery and mulitple renal angioplasities. Luckily, I connected with FMDSA early on in my journey with this disease which helped me greatly in navigating through life with a chronic illness. FMDSA provides excellent educational infomation about this rare disease, patient stories illustrating the challenges that many of us face with the disease and physician information. I have been a volunteer since about 2005 and have enjoyed every minute of it doing different types of activities from arranging our attendance at external conferences to speaking with newly diagnosed patients.

FMDSA Executive Director Pam Mace is an extraordinary human being and FMD patient herself. She relentlessly pursues avenues to raise awareness and educate the medical community about our disease. Pam also initiated the FMD Patient Registry to provide research that is so desparately needed by our patients and their families. The FMDSA board members are extremely committed to pursuing the FMDSA mission and they work diligently with patients and developing fundraisers to raise money that we really need to further the accomplishments of the organization. The FMDSA Annual conference is always a tremendous success as it provides patients and the medical community with a tremendous amount of education. Its also a very special event for patients in that it allows us to spend time with other patients and share stories in a very safe, friendly environment that we wouldn't have otherwise. Overall this is an outstanding organization and I look forward to contributing more to FMDSA now and in the future.

I was diagnosised with renal artery Fibromuscular Dysplasia in 2006 and at the time had never heard of it. I had many questions and found my local doctors unable to answer many of them. I was and still am the the only FMD patient for my family doctor. I used the FMDSA web site but it was a year after first being diagnosed before I contacted the FMDSA and very much wished I had contacted them right away. I found it incredibly helpful to be able to talk with other FMD patients and to hear their stories. After talking with another patient and Pam Mace I decided to seek a second opinion at one of the FMD centers, Mt Sinai with Dr Jeff Olin. It was a great decision for me and so helpful to talk with a physician who had cared for several hundred FMD patients. I had a second renal artery angioplasty done at Mt Sinai in 2007 and have had stable blood pressures since that time. I have attended the FMDSA annual conference in Cleveland since they started and find the conference so helpful and informative. I always learn something new and enjoy meeting with the other patients. I wanted to become involved early and hoped to be able to give to other newly diagnosed patients the kind of support I received. I am the nurse volunteer for the state of North Carolina and take the responsiblity very seriously. I get the support from the FMDSA that I need to be a good volunteer. As the nurse volunteer I always encourage the patient to attend the FMDSA conference if it is possible and provide the resources to seek a second opinion if they so desire. I find the FMDSA web site very helpful and refer patients to that as well. I am proud to be a volunteer for the FMDSA and hope to remain in that role for many more years. It is very rewarding. I also support the on-going research on FMD and the work of the FMDSA patient registry. There is so much yet to learn about FMD itself and learn the impact FMD has on lives of the people affected by it. I know public awareness and physician awareness has increased because of the efforts of the FMDSA. There are still plenty of people to reach and much education to be done. Thank you.