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Amyloidosis Support Group, Inc.

Rating: 4.98 stars   43 reviews 1,302

Nonprofit Issues:

Address:

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

2015 Top-Rated Nonprofit
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More Info

www.amyloidosissupport.com

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Reviews for Amyloidosis Support Group, Inc.

Rating: 5 stars  

5 people found this review helpful

The ASG website is the most complete resource and support for people with any variety of amyloidosis. From early symptoms to diagnosis to treatment centers, patients are guided through the frightening maze that they are thrust into when this rare debilitating disease strikes. In 25 cities, twice a year, ASG brings together expert doctors in the field, area patients, caregivers, and researchers to answer questions, get cutting edge information, learn about drug trials, and give each other sustenance. There is no other group that offers such total commitment to support each individual patient in his struggle.

 
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Rating: 5 stars  

4 people found this review helpful

I would describe the Amyloidosis Support Group, Inc. as a GPS thru a terrible neighborhood on a stormy night and you have no idea where you need to go. The information about this disease has been limited and dated on the internet. My Doctors studied 15 minutes on the chapter called Amyloidosis. I have 20 minute office visits with my Doctors for questions and treatment plans. If I didn't have this support group to go too for answers and directions I don't know what I would have done. Questions don't come from 9-5, they come at 2 in the morning when you can't sleep and you are scared, but somehow, someone is on the end of a keyboard to answer, support and guide you thru some scary thoughts, ideas and road bumps ahead. Now you go back to sleep only to wonder if the treatment you are receiving is the best and what are these side effects I keep having. Again, at the end of a keyboard someone is waiting to tell you; "to be strong it gets easier", "I've had that side effect it will go away" or "call your Doc that doesn't make any sense". Guidance and direction when you need it most. I cannot thank them enough and they will never know how much they have lifted me up. Sometimes I just read what others are going thru and know that I am not alone. Sometimes I share and hope and pray it makes them feel better in their battle, but either way I am stronger and better educated for having joined this group.
Thank you to Amyloidosis Support Group, Inc. for all that you do!
Sincerely,
Karen Harris

 
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Rating: 5 stars  

5 people found this review helpful

Muriel Finkel of the Amyloidosis support group was the only person that understood my illness. She recommended that I visit the Mayo Clinic as no one in the medical field in Colorado Springs could figure out what my illness was, let alone how to help me. I've been given access to many doctors as the support group visits my area twice a year. I can not say enough for the personnel support and guidance I get from Muriel. I've never met anyone that treat each of the hundreds of Amyloidosis patients as if we are the her best friend. She just has the Biggest Heart. I am blessed to have her.

 
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Rating: 5 stars  

2 people found this review helpful

In 2007 right after my husband was diagnosed with AL Amyloidosis I somehow found Muriel Finkle, founder and head of the Amyloidosis Support Group (ASG). Muriel had THE answer we needed, steering us to Dr. David Seldin at the Boston University Amyloidosis Medical Center who saved my husband's life with a Stem Cell Transplant in 2008 (he's still in Complete Response).
ASG is a fount of knowledge and support----Highly Recommended.

 
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Rating: 5 stars  

2 people found this review helpful

This support group been a great wealth of current and accurate information associated with Amyloidosis. With the knowledge and support that is being transmitted through this network, it has helped tremendously in increasing what questions to ask and a better understand of this awful disorder. The information passed along is indispensable. The support group meetings that I have attended are well worth the time and effort. Have to do a shout out to Elinda and Michael for their efforts for the Philadelphia support group meetings.

Keep up the good work Muriel!!!!!!!! Kudos to your leadership.

Thank you so much,
Mickey Wherry

 
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Rating: 5 stars  

2 people found this review helpful

This is an excellent resource for people who have been diagnosed with the rare disease Amyloidosis. ASG provides a wealth of information and support through their website, by phone, and in meetings at locations throughout the US. They've published a very clear overview brochure on Amyloidosis, available on the website.
My husband was diagnosed and treated over 6 years ago, and this has been an invaluable resource for us. Also, I've met many people in my volunteer work at the Amyloid clinic at Boston Medical Center who say that they've been helped immeasurably by ASG.

 
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Rating: 5 stars  

4 people found this review helpful

this is a well run, total volunteer agency, that provides face to face support to patients, caregivers, family and friends who deal with this insidious disease (25 cities/66 meetings)......also with one call to the 24 hr hot line or with a click of a mouse on their web site map the patient can be directed to hospitals and drs who are skilled in treating amyloidosis. As with any illness early diagnosis and treatment is critical........volunteer turnover is near zero which shows the dedication of its none paid helpers

 
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Rating: 5 stars  

5 people found this review helpful

At the end of a support group meeting, patients as well as caregivers come up to me and thank me for this support group. Prior to this group, misinformation regarding the survivor rates and treatment of amyloidosis was astounding. This group has distributed the most up to date research from the best amyloidosis centers. The knowledge and education that this group provides is invaluable to an amyloidosis patient/caregiver making their healthcare decision. Without this group's input, this disease would still be considered fatal instead of treatable.

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?

Okay

Would you recommend this group to a friend?

Definitely

When was your last experience with this nonprofit?

2015

 
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Role: General Member of the Public
Rating: 5 stars  

5 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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Rating: 5 stars  

5 people found this review helpful

A family oriented group. Muriel Finkel is an exceptional person whom is available 24/7 to give support and educational advises. She has given us and others care givers and patients the help and support that beyond words can express

 
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