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19 Reviews
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January 2, 2014
3 people found this review helpful

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January 2, 2014
3 people found this review helpful

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.

Ways to make it better...

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

Where do I start .....

More feedback...

How would you describe the help you got from this organization?

None

How likely are you to recommend this organization to a friend?

No

How do you feel you were treated by this organization?

Badly

When was your last experience with this nonprofit?

2012

December 18, 2013
1 person found this review helpful

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Review from Guidestar
December 18, 2013
1 person found this review helpful

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.

More feedback...

Was your donation impactful?

Definitely

How likely is it that you would recommend that a friend donate to this group?

Definitely

How likely are you to donate to this group again?

Definitely

When was your last experience with this nonprofit?

2013

December 14, 2013
1 person found this review helpful

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December 14, 2013
1 person found this review helpful

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.

Ways to make it better...

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

encourage more volunteers to apply for grants. Funding is badly needed to help this organization grow.

More feedback...

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?

A lot

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

December 7, 2013
1 person found this review helpful

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Review from Guidestar
December 7, 2013
1 person found this review helpful

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.

More feedback...

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

December 5, 2013
1 person found this review helpful

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Review from Guidestar
December 5, 2013
1 person found this review helpful

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.

More feedback...

How would you describe the help you got from this organization?

Life-changing

How likely are you to recommend this organization to a friend?

Definitely

How do you feel you were treated by this organization?

Very Well

When was your last experience with this nonprofit?

2013

December 4, 2013

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December 4, 2013

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.

Ways to make it better...

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

N/A

More feedback...

How would you describe the help you got from this organization?

Life-changing

How likely are you to recommend this organization to a friend?

Definitely

How do you feel you were treated by this organization?

Very Well

When was your last experience with this nonprofit?

2013

November 9, 2013
3 people found this review helpful

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Review from Guidestar
November 9, 2013
3 people found this review helpful

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.

Ways to make it better...

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

New leadership. Accountability of funds by having organization complete an audit. Have the audit be done by a company outside the organization. Have a policy on patient complaints and a way to resolve these complaints. Hire an executive director who has experience in running a non-profit. Treat patients and family with dignity and respect. No discrimination or retaliation should be tolerated on any level. Adhere to a strict confidentiality policy.

More feedback...

How would you describe the help you got from this organization?

None

How likely are you to recommend this organization to a friend?

No

How do you feel you were treated by this organization?

Badly

When was your last experience with this nonprofit?

2013

October 29, 2013
2 people found this review helpful

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Review from Guidestar
October 29, 2013
2 people found this review helpful

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

More feedback...

How would you describe the help you got from this organization?

None

How likely are you to recommend this organization to a friend?

No

How do you feel you were treated by this organization?

Badly

When was your last experience with this nonprofit?

2011

October 26, 2013

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October 26, 2013

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.



Ways to make it better...

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

N/A

More feedback...

Was your donation impactful?

Definitely

How likely is it that you would recommend that a friend donate to this group?

Definitely

How likely are you to donate to this group again?

Definitely

When was your last experience with this nonprofit?

2013

October 26, 2013

more

October 26, 2013

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

Ways to make it better...

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

I would like to see more people get involved and donate so that more research could be done and a cure could be found. This disease stopped my grandson from a full life and his dream of playing profession football. I would also like to see more seminars in hospitals, religious groups, schools to teach people and maybe if people are more award they will donate more to help the on going research to find a cure.Thank you

More feedback...

Will you volunteer or donate to this organization?

Definitely

How much of an impact do you think this organization has?

Life-changing

When was your last experience with this nonprofit?

2013

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