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4 Reviews
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January 31, 2014

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Review from Guidestar
January 31, 2014

All of the Amyloidosis diseases are confusing and complicated and there is little information out there that is straightforward and helpful. The Amyloidosis Foundation went above and beyond to help me and my family when my brother was diagnosed with AL amyloidosis. The website contains medical articles that are updated and informative. The volunteers with the organization are helpful and supportive. I am very impressed with their fundraising efforts and annual research grants to further awareness and research. If it weren't for this foundation, I would have been unable to navigate the medical jargon and they know all of the specialists in this disease so they can guide anyone, worldwide, to medical professionals to help them. I am very grateful that they were there for my brother and my entire family. When I call them, they talk to me right away - and always call back when needed!

Ways to make it better...

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

I would increase their funding, if I had boatloads of money! More booklets and handouts about this disease would help to spread awareness. And with more funding, comes more research!

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

January 31, 2014

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Review from Guidestar
January 31, 2014

I lost my husband to this terrible disease. When he was diagnosed there was limited and out of date information about it and very limited resources available to patients and caregivers. It was an extremely difficult time for us and for all other patients dealing with this life threatening diagnosis and very difficult treatment protocol. The Amyloidosis Foundation did not exist at this difficult time for us but when it came into being I wanted to be a part of amyloidosis awareness around the United States. I wanted to make some kind of difference, no matter how small, to helping others faced with the same experience. Working with the Amyloidosis Foundation has given me this opportunity. As part of the effort to raise awareness about this rare, often misdiagnosed and mistreated disease, the Foundation provides and staffs an awareness booth at the annual medical conventions for cardiology, hematology and nephrology. I am fortunate to be able to work in this booth every year. The booth is staffed by volunteer patients and caregivers who talk with physicians from all over the world about the disease, about research projects and clinical trials, and new treatment protocols. We provide much needed disease information in various languages to attending physicians and other medical personnel and we facilitate critical connections among the disease experts and others. We continue to update our disease information and to make it available to others at these medical conventions and through the website.

In addition to the disease awareness efforts the Foundation funds amyloidosis research efforts every year. Research on rare diseases such as this one is always an issue and a challenge as funds are always limited with all rare disease foundations competing for the same pool of money.

In honor of my husband Bill Finnegan who died of this disease I am pleased to support the Amyloidosis Foundation both financially and as a dedicated volunteer.

Ways to make it better...

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

Make it bigger, expand its mission and presence, do more promotion of the foundation, more networking and fundraising and communicating with donors via newsletters and emails and various social media. And I would seek opportunities to work in conjunction with other rare disease charities for a common benefit thru conferences and fundraisers, among other opportunities.

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?

2014

January 31, 2014

more

Review from Guidestar
January 31, 2014

I am both a volunteer as well as an Amyloidosis patient. If it were not for this wonderful organization spreading the word, educating up and coming research stars as well as the medical community, I would most likely be dead by now. Since I was diagnosed over 6 years ago I have seen so many advancements in medicine and the way they treat patients, that we (the patients), are surviving longer than the predicted 18 months we were originally told we had left to live. Some of us are fortunate enough to be living very productive lives and without financial support to this wonderful organization the wheels will begin to slow down. We can't let this happen as more and more people are being diagnosed every year with this awful disease. Come join our choir, we can always use a new voice and help us snuff out this dreadful disease or make our lives easier to live.

Donna U.

Ways to make it better...

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

We could use a lot more funding. Folks, help us out!

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

November 16, 2011

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November 16, 2011

My Dad was diagnosed w hereditary Amyloidosis and after researching and many Mayo visits, there was nothing they could do. More research needs to be done to help cure this terrible disease. The type he was diagnosed with is hereditary and could affect other family members. This contribution comes from myself and my daughter that raised money at our garage sale in September. I hope you find the donation helpful. Thank you for all you do. This donation is in loving memory of Eugene A. Reinardy of Hastings, MN..

The Great!

I've personally experienced the results of this organization in...

Mary was helpful with understanding and offering suggestions. Unfortunately, there is no cure.

Ways to make it better...

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

if I had more money to give I would love to help find a cure.

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