Amyloidosis Support Group, Inc.

Rating: 4.98 stars   43 reviews

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
Write a Review
Donate
Invite Reviews Share This Nonprofit

More Info

www.amyloidosissupport.com

Promote This Nonprofit

GreatNonprofits badges allow you to raise awareness of your favorite nonprofits on your own web sites!

Review this charity on
GreatNonprofits

Reviews for Amyloidosis Support Group, Inc.

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

 
Flag review
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.

 
Flag review
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.

 
Flag review
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

 
Flag review
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.

 
Flag review
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

 
Flag review
Rating: 5 stars  

3 people found this review helpful

WOW!!! i am so HAPPY to see you are still doing this. When Frank Burden was there in Feb 2013 and couldnt get out the support totally lifted his SPIRITS. I would love to Help in which ever way i could in honor of him

Thank You Muriel and all those that were there

Carol Johnson Burden

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

 
Flag review
Rating: 5 stars  

2 people found this review helpful

I'm not sure I can find the words to express my appreciation for ASG. I reached out the the group a few years ago, when my father was first found to have familial amyloidosis. Our family was just THROWN! He was the first to be diagnosed, and no one could make any sense of what was going on. I reached out to ASG on a whim, to just find someone --- anyone -- who could understand. Instantly, you no longer feel alone. The facilitator, Muriel, and the participants respond quickly and with compassion. They are open to share knowledge (and they have a TON of clinical and practical/real-life knowledge). They create a sense of support and empowerment, and do so without pity.

Recently, I have started to lean on ASG again as I was experiencing some scary amyloidosis-like symptoms. I wanted to get tested, but didn't know how. ASG told me how ... within the hour. Folks from Mayo and Boston were offering to help. (Yes, within the HOUR!). Then I tested positive for the gene. The first thing I did was reach out to Muriel to get a plan. I knew she, and the other ASG folks, would be able to talk me off the ledge and EMPOWER me with up-to-the-minute information and support.

There are real people and real experts behind ASG. And you can feel their desire to change the game. When their literature says "to some day turn this disease into a mere nuisance" (or something to that effect :) they mean it. To the core.

Unfortunately, my dad's journey was confusing and sad, and often filled with deep feelings of helplessness. But I truly believe my journey will be different ... thanks in large part to ASG. They got me off to the best start possible. And for that I am truly, truly grateful.

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?

2014

 
Flag review
Rating: 5 stars  

2 people found this review helpful

The ASG is a clearinghouse of information. For patients and caregivers this is the site to be on. Muriel Finkle and other support staff members around the country are nothing but angels without wings. As a patient… I am so grateful for all they do.

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

Not a thing

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?

2014

 
Flag review
Rating: 5 stars  

3 people found this review helpful

After a year of tests for increasing ALP level, my husband was diagnosed with AL Amyloidosis in 2012. We found the phone number for this support group online and Muriel answered the phone one Sunday afternoon. She was very confident, knowledgeable, and backed up everything with thorough studies and reports. We are so thankful for all her help and care and great advice for healing treatment at Boston University Medical Center. While receiving his stem cell transplant and high dosage chemo , we attended the weekly support group meetings in the clinic and received so much encouragement and information.
Thank you so very much.
Keep up the labor of love!!

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?

2014

 
Flag review