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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

11 Stories from Volunteers, Donors & Supporters

1 Tricia J.

General Member of the Public

Rating: 5

I was lucky enough to be able to attend the Mayo meeting in Rochester last Saturday. I wasn't sure initially if I was going to like it. However, if you have the opportunity to attend a meeting do yourself and your significant other a favor and attend!
I'm not much of a joiner, but, I must say that the group of people I met were wonderful.
It was heartening to hear from people that had achieved "a response" to treatment, to people that were just starting to deal with this disease, to the two daughters from Wisconsin that attended to educate themselves on behalf of their dad, who hasn't got a confirmation on which form of Amyloidosis he has yet.
It was the first time i have met anyone else who is dealing with AMY either personally or taking care of someone who has AMY.
THe doctors, well they were both wonderful. I spoke with Dr. Gonsalves, what a genuinely caring fellow he is, and in ten minutes I understood more about AMY than I've learned on the Internet in the last 10 mos since the initial finding of AL AMY in my lungs.
DR. Gertz was also informative and caring. Two doctors giving their Saturday up, to help us understand what we are dealing with is extraordinary. If you have or know someone who has Amyloidosis of any kind you owe it to yourselves to attend a meeting to learn about this rare and potentially fatal disease.
I think the best thing about the meeting was learning I wasn't alone with this thing called Amyloidosis. Just getting the opportunity to meet and talk with people that have and or/are dealing with AMY in its different forms was eye opening. I finally met Muriel who I had only talked on the phone or emailed before. She is a most kind and knowledgeable soul. I am looking forward to my next meeting with this wonderful group!

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.

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.

2

General Member of the Public

Rating: 5

Fantastic e-newsletter. The language used is easily understandable and keeps us well informed. Keep it up!

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.

2

General Member of the Public

Rating: 5

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.

2

General Member of the Public

Rating: 5

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.

3

General Member of the Public

Rating: 5

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.

Review from Guidestar