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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

58 Stories from Volunteers, Donors & Supporters

General Member of the Public

Rating: 5

ASG is a shining example. They were instrumental in guiding us as to how to proceed when we were first hit with the blockbuster news that I had amyloidosis.
Their patient support meetings have brought leading researchers and practitioners to patients and their families and in the most generous form imaginable with no charge for their assistance

Kudos!!

1

General Member of the Public

Rating: 5

These stories of patients helped me cope with amyloidosis and I hope that mine will give encouragement to others also.

2

General Member of the Public

Rating: 5

My oldest brother passed from Hereditary Amyloidosis and his diagnosis was the first any of us had heard of this horrible disease. My youngest brother at 54 is suffering greatly from the same disorder and we are crushed. This site has been a God send of support, information and assistance. Through this site we were able to contact the Dr's who originally handled my older brothers' case. Its an amazing website ran by caring wonderful people and I'm so thankful I landed here on my first online search for info on this condition. Thank you so much.

2

Client Served

Rating: 5

I have amyloidosis, a very rare condition. I developed it as a result of having an incurable blood cancer. It is one of a number of types of amyloidosis which can be fatal. Many people are not diagnosed until they have end stage disease because it is so rare and can present with such a variety of symptoms. Muriel Finkel, who oversees the Amyloidosis Support Group, Inc., runs an amazing not-for-profit which assists people with all kinds of amyloidosis. She responds immediately to requests for assistance, be it finding a doctor who is an expert treating people with the disease, or referring patients to the latest research articles and drug studies, or providing other kinds of support. In addition, she organizes meetings in various cities in the United States and invites leading physicians to speak at the meetings and help patients figure out how to get the best care available. Since Muriel is so knowledgable and dedicated to the cause, doctors have been willing to donate their time to this group of patients, many of whom are coping with the most serious aspects of the disease which may require a stem cell transplant, and/or a heart or kidney transplant. Amyloidosis is an orphan disease. There are no statistically significant studies or huge organizations to assist patients and caregivers navigate their way. Muriel Finkel and Amyloidosis Support Group, Inc, does a phenomenal job in helping patients and their families cope with this devastating illness.

1

General Member of the Public

Rating: 5

After being ill for a short time, my husband, Bill was diagnosed January 13, 2004 with Amyloidosis. He passed away February 22, 2004. I found out about this support group and went to several meetings in Philadelphia. This disease is so rare that I had no idea where to turn for any support to help me or my three grown children, get through the grieving process. I was very grateful to hear of others and how they were dealing with this disease.
Although I haven't been to any meetings for years, I like being informed through emails of all the progress research has made.
My husband was a very healthy man taken to soon, 52 years old, and to quick by a disease neither of us heard of. This support group is a place for families to meet others who are going through some of the same health issues and find out where they can be best treated for this disease, I hope this group continues with their wonderful support for Amyloidosis patients, giving hope along the way.
Sincerely,
Tricia Lansek

3 Jane105

General Member of the Public

Rating: 5

This group was the only place to turn to when I was diagnosed with a non curable disease. I got current information that was not to be found any other place. The members are from all over the world. We all share experiences, solutions, medications, new trials, and other information that can only be learned by having the disease or caring for someone with it.

1

Client Served

Rating: 5

Can't say enough about the Amyloidosis Support Group. This is a disease few people are aware of, and we were lucky enough to find Muriel Finkel and the Amyloidosis Support Group. Fortunately, our internet search brought us to this group, and thankfully, we were in great hands! It is very lonely and scary to be diagnosed with a disease so few (including doctors!) know much about and this group has been for many - literally - a life saver.

2

Client Served

Rating: 5

I was diagnosed with Amyloidosis [which is a very rare form of cancer that can attack any or all of your organs and available spaces] in 2013 as the result of a annual health checkup. It was a very lonely feeling because while the clinic where I was diagnosed did know something about it they did not have any patient experience with this. After I moved my treatment to MD Anderson Cancer Center I continued my habitual Internet browsing and became aware of this group and that it held meetings in Dallas, TX. I went to a meeting and found a) others with similar problems, b) a printed piece of literature about this, and c) most importantly other folks who just wanted to make sure that it is not "JUST ME!".

Be assured that it is not "just me" and that there is medical research progress has resulted in new drugs and so, "Help is on the way!" and it is discussed at each and every meeting you will attend.

There will be meetings of this group in Houston at MD Anderson Hospital's conference center starting September 2016.

3

Client Served

Rating: 5

I was diagnosed with Amyloidosis in 2010 and immediately looked on the Internet for information - what a mistake! The first sight I found said I had 6-12 months to live; needless to say I was devastated. It wasn't until I found AMS and Muriel Finkel that I received correct information, the knowledge of wonderful doctors and the MayoClinic: in other words, hope. This group offers a place to read the correct and the latest information on Amyloidosis, to relate to others with the disease through attending meetings with knowledgable doctors or through an on line forum, to ask hard questions and get honest answers and to feel at ease knowing that we all going through the the same things. A wonderful group!

2

Client Served

Rating: 5

My brother is still walking and not in a wheelchair as well as a much better quality of life as a direct result of the assistance from Muriel Finkel of ASG. She works with hundreds of people and yet remembers us all and she remembered by brother after one meeting he attended. Thanks also go to Kay Rowley the ASG NW representative that got him to his first meeting. My brother is in a trial for ATTR and is now in the second phase. I go to all the meetings in the Northwest that are held in Seattle and Portland. Doctors from clinics and research facilities all over the US have taken the time and effort to come to us, via the ASG. It is hard to say no to Muriel! Thank God! Most of my family carry the mutation and our generation would not have had a chance without this organization: that gets people to the right doctors, gives info about drug trials, and keeps us abreast of new research and treatments globally. Their website is well set up and easy to follow. You get personal attention. Thanks to all who volunteer!