If it wasn't for this group, my family would not have made the contact with the doctors we needed to find relief for our symptoms. Our family has a very rare form of hereditary amyloidosis. After attending the Chicago meeting in 2013, we came away with far more information than we anticipated. This put us on a path for getting the help we needed. And, we have been glad to pass along any new information we learn through the support group.
I attended my first support mtg in Chicago last week end; it was excellent & very informative. Plenty of time with doctors for questions & everyone was so nice! Reading materials good too! A sincere thank you for all involved & the support.
My daughter (who has amyloidosis) and I attended our third support meeting in Woodale, IL and again found it very helpful and informative. This was the first with Dr. Gerts from Mayo and the second with Dr. Abonour from Indiana. Both answered all the questions we had, both during the presentation/question session and one-on-one with Dr.Abonour. Since we are both more familiar with this disease and its problems, we were able to absorb more info. As usual Muriel Finkel did a top-notch job facilitating the meeting. Thank you, Muriel. This is a superb way to be able to hear other peoples' experiences and learn all the latest from the experts. Looking forward to the next meeting in June. People and caregivers please avail yourselves of the opportunity of attending, if you are able, as you will learn more than you will by just reading about this disease and can get answers from the experts in this rare disease. Thank you again for having these support meetings.
Fantastic e-newsletter. The language used is easily understandable and keeps us well informed. Keep it up!
The ASG website is the most complete resource and support for people with any variety of amyloidosis. From early symptoms to diagnosis to treatment centers, patients are guided through the frightening maze that they are thrust into when this rare debilitating disease strikes. In 25 cities, twice a year, ASG brings together expert doctors in the field, area patients, caregivers, and researchers to answer questions, get cutting edge information, learn about drug trials, and give each other sustenance. There is no other group that offers such total commitment to support each individual patient in his struggle.
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!
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.
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.
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,
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.