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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

55 Stories from Volunteers, Donors & Supporters

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.

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.

3

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.

9

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!

6

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!

Previous Stories
2

Volunteer

Rating: 5

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

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Lisa583

Volunteer

Rating: 5

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

Thank you FMDSA

Lisa Shelanskas
West Suffield Ct

2

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.

1

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.

2

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.