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2016 Top-Rated Nonprofit

Amyloidosis Support Group, Inc.

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Nonprofit Overview

Causes: Health, Medical Disciplines Research

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

Community Stories

60 Stories from Volunteers, Donors & Supporters

3

Client Served

Rating: 5

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.

3

Client Served

Rating: 5

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

4

Client Served

Rating: 5

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.

5

Volunteer

Rating: 5

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

5

Volunteer

Rating: 5

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.

5

General Member of the Public

Rating: 5

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.

6

Client Served

Rating: 5

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

3

Client Served

Rating: 5

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

2

Client Served

Rating: 5

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.

2

Client Served

Rating: 5

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.

3 Bonnie57

Client Served

Rating: 5

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!!

3 Roger Capps

Client Served

Rating: 5

I was recently diagnosed with Amyloidosis, and didn't have a clue where to turn to get more information about treatment, etc.. Fortunately I found the Amyloidosis Support Group website, which put me in touch with the amazing work that this group is doing. It provides great information, feed-back, and support sessions for those of us with this disease. Can't say enough good things about the work of two ladies
who are dedicated to this cause -- Muriel Finkel and Kay Rowley. Any question I have is answered promptly. I have attended one support group session -- in Arizona -- that was a wonderful way to 'network' with other Amyloidosis patients. I am looking forward to attending another one in the Seattle area in September. Can't say enough good things about this organization!!!

2

Client Served

Rating: 5

It is wonderful to have a place to go and get questions answered. This has been a remarkable resource and comfort. I especially want to say that Muriel Finkel and Kay Rowley have been a God send and are in constant communication with us to get information to us about Familial Amyloid meetings that we needed to go to and trial information for us to check out and participate in. My husband has Familial Amyloids, as does his brother, a sister and one to be checked. His Mother and her 3 brothers also passed from this disease. He has cousins that are also afflicted. We have 3 sons that we were also worried about, but with the trials that are going on at this time, I think they will have a chance at health in the very near future.

2

Client Served

Rating: 5

When i was diagnosed i felt so all alone and helpless. With the guidance and support of this group i found a great Dr., and feel hope and a future now.
Mike S

Review from Guidestar

2

Client Served

Rating: 5

Amyloidosis Support Group has been a great help to me in better understanding my disease, resources available, and advice. I access the site daily, and read most of the posts. Thanks for all your help, Volunteers.

Review from Guidestar

2 Sara96

Client Served

Rating: 5

I am the caregiver for my Father, who was diagnosed with AL Amyloidosis in September 2013. He started treatment at our local hospital. I attended a meeting of ASG in NY in February 2014. I believe this meeting saved my Dad's life. If it hadn't been for the advice of the specialists, as well as the support of other patients and caregivers, Dad may have gone through with a SCT his body likely would not have tolerated. He's since selected a different specialist and is continuing with less drastic treatment options.
I am so incredibly thankful to have come across ASG. Having a loved one diagnosed with a strange and rare disease that most doctors don't understand is life altering. It is a great comfort to have this family of caregivers and patients. Additionally, ASG has provided current medical developments promptly, and also works with medical team to help answer questions of group members.

Review from Guidestar

2

Client Served

Rating: 5

My husband was diagnosed with this somewhat rare condition and when I went searching for information I came across this support group and contacted them. Their response was quick, informative, compassionate and generally just very, very helpful. They pointed me to more information and connected me directly with others in their group who had the same or similar condition as my husband. A member contacted me and described the process of diagnosis he had undergone so to keep us informed of what to expect. He offered to answer any questions and gave his phone number and email for contact information. Everyone we've had contact with have just went above and beyond to help us understand the disease and offer support in a variety of ways.

2

Client Served

Rating: 4

In addition to receiving amazing support from this organization, I'm also a donor. The support, guidance, resources and amazing work Murial Finkel and the others in senior positions in this organization provide are indescribable for those of us who have been diagnosed with this very rare disease.

Review from Guidestar

1

Client Served

Rating: 5

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.

2

Client Served

Rating: 5

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.