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Fibromuscular Dysplasia Society Of America Inc

Rating: 4.33 stars   30 reviews 742

Nonprofit Issues:

Address:

20325 Center Ridge Road Suite 360 Rocky Ridge OH 44116 USA

Mission:

2015 Top-Rated Nonprofit
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216-834-2410
www.fmdsa.org

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Reviews for Fibromuscular Dysplasia Society Of America Inc

Rating: 5 stars  

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.

 
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Rating: 5 stars  

2 people found this review helpful

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.

 
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Rating: 5 stars  

1 person found this review helpful

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!

 
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Rating: 5 stars  

2 people found this review helpful

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.

 
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Rating: 5 stars  

4 people found this review helpful

I was diagnosed with Carotid and Vertebral Artery FMD in both cervical and intracranial segments almost 5 years ago when having a Cerebral Angiogram to evaluate an aneurysm. Unfortunately I was not told about my FMD and had no idea it was the FMD that caused my aneurysms. ( a second was found during the angiogram) Six months later I had a TIA which lasted about 12 hours and At that point decided I needed to get the report from my cerebral angiogram because I did not know I had any risk for stroke. That is when I not only found out about my FMD, but also that I had encephalopathy in my left frontal lobe due to prior ischemia. I immediately googled FMD and found FMDSA and realized this was a disease to be taken seriously. At that time none of my doctors knew much about FMD. I am amazed at how much progress FMDSA has made in terms of spreading awareness about FMD and how much information has been gained by the data collected for the FMD Registry. Today I am doing well, there is now an FMD Clinic in my hometown and I am honored to be a volunteer for FMDSA.i am so grateful for all of those that have been involved with FMDSA working so hard for all of us.

 
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Rating: 5 stars  

2 people found this review helpful

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.

 
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Rating: 5 stars  

2 people found this review helpful

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!

 
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Rating: 5 stars  

1 person found this review helpful

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.

 
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Rating: 5 stars  

2 people found this review helpful

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.

 
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Rating: 5 stars  

3 people found this review helpful

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.

 
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1 previous review
Rating: 5 stars  

1 person found this review helpful

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

If I had to make changes to this organization, I would...

Nothing

Would you volunteer for this group again?

Definitely

For the time you spent, how much of an impact did you feel your work or activity had?

Life-changing

Did the organization use your time wisely?

Very Well

Would you recommend this group to a friend?

Definitely

When was your last experience with this nonprofit?

2013

 
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