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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

45 Stories from Volunteers, Donors & Supporters

6

Client Served

Rating: 5

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

3

Volunteer

Rating: 5

This great organization has truly brought hope to my life! I was diagnosed when there was no organization around representing us affected by this disease. I was told no one would ever fund research in my life time because my disease was to rare. Yet in the ten years FMDSA.org has been around the engagement of the medical community is astounding! There are FMD Registry sites and centers through out the country! There is a FMD patient registry Funded by FMDSA! I can now go into a new doctors office and most of the time they have heard of FMD. Prior to FMDSA the doctors would always confuse my disease with Fibromyalgia. Just google Fibromuscular Dysplasia and you will get thousands of articles! When I was diagnosed there were three! This organization has given me such hope for not just myself, but for my children and their children! A great big thank you to FMDSA, you have taken away the fear of this disease and offered up hope in it's place! The photo is of Executive Director Pam Mace, Dr. Jeffrey Olin and Dr. Heather Gornik. These three among countless others have volunteered hours of their life so that we can find answers. Thank you!

makeadiffernce

Client Served

Rating: 5

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

Previous Stories
1

Volunteer

Rating: 5

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

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Lisa583

Volunteer

Rating: 5

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

Thank you FMDSA

Lisa Shelanskas
West Suffield Ct

Volunteer

Rating: 5

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

Client Served

Rating: 5

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

Volunteer

Rating: 5

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

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

Volunteer

Rating: 5

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

Volunteer

Rating: 5

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

1 AJLEVY

Volunteer

Rating: 5

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

I volunteer for FMDSA by being a moderator for their FMD Support group on INSPIRE. When I welcome new members I always suggest checking out the FMDSA.org website. It is great knowing I can give newly diagnosed FMD patients a link to an organization that I know they can trust and find the most up to date information . I can also say volunteering for FMDSA has been the most rewarding experience I have ever had with a non profit. It's a first class professional and compassionate organization.

Karen434

Donor

Rating: 5

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

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.

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.

Previous Stories
3

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!

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.

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

1

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.