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November 7, 2013

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November 7, 2013

Muriel is a godsend to those of us who are diagnosed and provides an invaluable ongoing service and is the center of a large community of support, knowledge exchange and care.

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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

October 19, 2013

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October 19, 2013

On Oct 17, 2012, my wife got diagnosed with AL Amyloidosis. It was a frantic time because of all the scary info on the web about the severity and general hopelessness of the disease. We got treated by a Multiple Myeloma Dr because we were told that was our best option.
While researching my
wife found this support groups' site and we went to our first meeting. What a blessing it has been. We were educated, counseled, comforted and advised. The Doctors who are on the front lines battling this disease were there to share everything they knew to help us with our path.
We changed Doctors and got the CORRECT treatment as a result of being there. My wife would absolutely NOT be doing as we'll as she is, if not for this group.

Ways to make it better...

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

I wouldn't change anything. I would only suggest increasing the groups influence and ability to educate the medical community so they can better recognize it when they see it.

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

October 18, 2013

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October 18, 2013

My husband passed away of amyloidosis in 2004. At that time, not much was known about amyloidosis. I know it is not unusual today to hear the same about amyloidosis, but with Amyloidosis Support Groups networking with hospitals in the field of amyloidosis, having support groups in hospitals, holding conferences, having an on line group for patients and caregivers, booths at medical conferences, those with amyloidosis are no longer alone. I volunteer with the Ohio & Michigan Amyloidosis Support Groups and seeing the patients, families and caregivers interacting together about their symptoms & treatments is heart warming. Otherwise, they would have no one who has walked their walk or would know no one who had this rare disease.

Ways to make it better...

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

N/A

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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

October 14, 2013

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October 14, 2013

I was diagnosed with amyloidosis over ten years ago before this organization had been founded. Slowly and steadily a handful of others affected by this rare disease came together under the dynamic leadership of a petite lady who had been caregiver to her beloved "Unc" and wanted to do something positive in his memory and take this disease on. Our numbers grew exponentially all over the country, offering information, support and awareness to patients as well as to the medical community. The online support network is amazing. Any question I have can be answered by someone who has experienced the same thing or by a medical advisor. Everyone is so supportive. What was once deemed a death sentence has become a very treatable disease when diagnosed early. This organization has saved countless lives by directing people to the right doctors and centers of excellence for appropriate intervention. Before Amyloidosis Support Groups was formed many people died from misdiagnosis and too late or dangerous therapies administered by poorly informed practiioners.

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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

October 13, 2013

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October 13, 2013

My husband was misdiagnosed as cidp 8 years ago. He has familial amyloidosis which is a rare form of
Amyloidosis and is a heredity disease in which it attacks your nerves and organs. It starts with sharp electrical pains in your feet, drop foot, and then numbness and eventually lose all use
of your body parts. We attend the Chicago support meeting in every other year. Muriel heads the support meeting and we could not do without her.we need a cure. For this terrible disease in which most people And some doctors have never heard of.

Ways to make it better...

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

Start some meetings for the familial group closer to Knoxville tn. Right now we are the only ones from tn.who travel to chicagoI am sure there are others in Tennessee who have this disease and either have been misdiagnosed or cannot travel that far.patients that have the heredity have a harder time with traveling too far. We will travel as long as we can.

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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

October 1, 2013

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October 1, 2013

I was diagnosed with amyloidosis 2 years ago and found so much incorrect information until I came across the Amyloidosis Support Group. This organization gives correct information along with caring concern for each person who asks for information. The meetings always have doctors who are specialists in the field in attendance and Muriel is the best advocate a group could ever have! It is a great organization and a wonderful help to all of us who have this rare disease.

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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

September 5, 2013

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September 5, 2013

Muriel asked me to be her Pacific Northwest Amyloidosis Support Group Co-Facilitator back in 2006. We started with one meeting a year in Portland, grew to two, and now a meeting in Seattle for a total of three yearly meetings. In my opinion, the meetings are professionally run and filled with good medical information. We always have a guest doctor who is an expert in Amyloidosis along with local doctors and other medical staff attending. The LLS joins us to provide medical and financial information as well as lunch for patients. Every meeting we have new people attending as well as regulars who provide helpful tips. I believe we have saved lives by providing the latest medical information available. I contracted AL Amyloidosis in 2002 and remain in healthy remission. Kay

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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

August 31, 2013

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August 31, 2013

The Amyloidosis Support Group has clearly done a tremendous job educating patients about this rare disease. Muriel Finkel, who runs the organization, is compassionate about her work and tirelessly helps those in need. I am quite confident that the knowledge she provides and the direction she has given to patients in need has saved lives. I whole heartedly endorse this non profit organization.

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How does this organization compare with others in the same sector?

Very Well

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

Life-changing

Will you recommend this organization to others?

Definitely

When was your last experience with this nonprofit?

2013

August 27, 2013

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August 27, 2013

Several years ago I was diagnosed with having localized lichen amyloidosis. Thanks to meeting this group I was able to learn much about the disease and the other more serious forms of amyloidosis. Ms. Muriel Finkel, volunteers, members and friends have been giving so much of their time making this an incredible support group. Under Muriel's leadership the group has made available latest information about this very rare disease. Muriel has contact with amyloidosis experts all over the world. The group has had meetings at various locales around the country with many physicians donating their time flying in to educate, disseminate information and answer detailed & intricate medical questions. My son who is a physician is also quite impressed with this group and the leaders' dedication. Thanks, Muriel and all the volunteers for making this one of the very best rare disease support group.

Ways to make it better...

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

None

More feedback...

Will you volunteer or donate to this organization?

Likely

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

Life-changing

When was your last experience with this nonprofit?

2013

August 22, 2013

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Review from Guidestar
August 22, 2013

Following my husband's diagnosis with this very rare disease, the Amyloidosis Support Group provided invaluable education and support. We have attended regional patient support meetings, and regularly receive emails with updated information on new research, treatment protocols and clinical trials. The support we have received from other patients, family members, and caregivers has been incredible. Thank you, ASG, for all you have done for us and for so many others.

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

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