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32 Reviews
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July 2, 2014

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July 2, 2014

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.

More feedback...

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

June 27, 2014

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June 27, 2014

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.

Ways to make it better...

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

Not a thing

More feedback...

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

June 10, 2014

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June 10, 2014

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!!

More feedback...

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

June 5, 2014

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June 5, 2014

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!!!

Ways to make it better...

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

NONE -- Just thank God for such wonderful people who are dedicated to helping others!!

More feedback...

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

June 3, 2014

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June 3, 2014

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.

Ways to make it better...

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

I can't see anything that isn't working well!

More feedback...

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

May 19, 2014

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

Ways to make it better...

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

Provide a dictionary for some of the medical terms used

More feedback...

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

May 15, 2014

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.

More feedback...

How would you describe the help you got from this organization?

A lot

How likely are you to recommend this organization to a friend?

Likely

How do you feel you were treated by this organization?

Very Well

When was your last experience with this nonprofit?

2014

May 14, 2014

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.

More feedback...

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

May 13, 2014

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May 13, 2014

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.

More feedback...

How would you describe the help you got from this organization?

A lot

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

May 13, 2014

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.

More feedback...

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

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