Amyloidosis Support Group, Inc.

Rating: 4.97 stars   37 reviews

Issues: Health

Location: 232 Orchard Dr Wood Dale IL 60191 USA

Mission: Face to face support and a helpful voice to guide people with this rare disease, with education and awareness of resources and treatment centers.
Target demographics: support, educate and empower patients and care givers of amyloidosis
Programs: Face to Face Support Groups, On LIne Support Groups, 24 Hour Hor/Help Line Toll Free
2014 Top-Rated Nonprofit
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Community Reviews

Role: General Member of the Public
Rating: 5 stars  

3 people found this review helpful

My husband was diagnosed with AL Amyloidosis and Multiple Myeloma in March 2014. That same week our son found the Amyloidosis Support Groups' webpage. He emailed Muriel Finkle and also spoke with Kay Rowley. They encouraged him to attend the Portland meeting, which was two days later. Our two sons and I attended that meeting, and it changed the course of my husband's life. Not only were we welcomed by Kay and Muriel, but we also met the oncologist and cardiologist who would in a short time save his life.

ASG through Muriel and Kay keeps our family abreast with all the latest happenings in the world of Amyloidosis. We feel their love and support and know that we are not alone. This time when our family attends the Portland ASG meeting on May 2, my husband will be with us. Thank you, ASG, for helping to save his life. We are grateful.

 
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Role: General Member of the Public
Rating: 5 stars  

1 person found this review helpful

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.

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.

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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Rating: 5 stars  

1 person found this review helpful

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.

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

None

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

 
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Role: General Member of the Public
Rating: 5 stars  

2 people found this review helpful

I needed help finding a center of excellence and support. The toll free hot line helped me so much as did the support meeting. I was directed to a center specializing in amyloidosis and the date for my appointment was even speeded up. I achieved as much peace of mind that is possible with this disease and appreciate them more than I can say.

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

the area of support, help, advice, education and peace of mind.

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

ask them to have meetings in every state and know that would require they get more donations.

 
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