I am certain that I would not be thriving today were it not for this support group and the extraordinary Muriel Finkel. I was diagnosed in 2011 and could find little accurate information or medical professionals who knew about the disease other than at the very few medical centers specializing in amyloidosis. Local docs generally had little or no experience with it and access to the experts was difficult at best. Muriel especially and this group in general have facilitate an unimaginable sharing of information and have provided a direct conduit to the experts themselves. The value of the biennial conferences in Chicago cannot be overstated. We not only get to talk directly with the experts and hear about the latest research findings and treatment possibilities but we also bond as a supportive community of patients and care-givers anxious and willing to share our stories and news. What a stunning difference it makes to have hope and to know that you are not alone.
My 23 year-old daughter was diagnosed with AL Amyloidosis in 2017. We quickly realized the massive amount of outdated and mis-information about this disease on the internet and found ASG. Their support groups held across the country, organized by volunteers, offer priceless access to expert doctors and other patients. Knowing there is support out there, and knowing you are not alone in the fight helps with the many challenges to patients, caregivers, and families. ASG is a fantastic organization!
After my husband was diagnosed at Mayo Clunic with AL Amyloidosis in 2009 I found out about the ASG. We attended a meeting in Denver, not knowing what to expect. We *never* missed another meeting! The information from world-class experts was INVALUABLE. It made my husband a better patient and me a much more effective care giver. To have access to these experts is a testiment to Muriel Finkel’s amazing ability to network for the benefit of those afflicted by this rare disease. If you want an example of how one person can make a difference in this world, just consider how Muriel has changed our lives for the better!
I’m so glad to have been referred! It’s really useful to share experiences and get information, especially from doctors and experts on Amyaloidosis. Muriel is an amazing dynamo! Lucky to have her!
Many thanks to the Amyloidosis Support Group for pointing us in the right direction - towards a Center of Excellence, when my Dad was at his most critical juncture in this disease...We were running out of time to get him in the right hands, and thanks to this organization, we got him set up with experienced, leading doctors specializing in amyloidosis at a Center of Excellence. I simply could not imagine going through this experience without the Amyloidosis Support Group - for its support, guidance, experience, and far reach, we are extremely grateful as a family.
i have enjoyed volunteering for this wonderful group since 2009. The patients and doctors are wonderful and everyone at the ASG is a joy to work with.
As a volunteer for this organization, I am very proud to be a part of it. Patient gratitude is outstanding and the doctors are wonderfully generous with their time.
Muriel: I was just cleaning out my desk today and happened upon your business card. I really want to tell you what a benefit the Support Group has been for me. The contact with others similarly afflicted with this unusual problem kept my head above water when I was sinking downward. If I had not attended there never would have been a spcific diagnosis of my Local Amyloidosis! My gratitude to you and the Wills is immense!
Dr. Otis Horton
I didn't find this group until after I had been diagnosed and was already in chemotherapy. However, even with the journey underway, they have made a HUGE difference in giving me access to resources to make a difference. When I first heard that there was going to be a 'support' meeting in KC where we were living at the time, I thought it would be good to meet some other patients. My expectation of what a support meeting would be was blown away when I attended. I had no idea that there would be a doctor(s) who are specialists to give us latest info on the disease/drug protocols AND they would gladly answer questions or give us guidance on our specific case. The knowledge that many patients have and gladly share was amazing and helpful. On top of that, the resources that Muriel has put together as handouts and on the website are absolutely invaluable. In addition to the AmyloidosisSupport.org website (which has TONS of info/resources) the Facebook page is a terrific source of help and Muriel pops up with help on there too. Honestly, I think there has to be more than one Muriel as I really don't understand how one human being could get so much accomplished. After my initial KC meeting, I decided to go to one at Mayo in Rochester so I could hear from more Amy specialists -- at that meeting, two of the Mayo docs gave me great advice on the chemo protocol I was on and what I might consider for the future. (SCT, stem cell collection for future,etc.) When I found out that there was a 'super' meeting in NYC, I was approaching the point where I needed to consider next steps, so I decided to go hear what the next collection of amazing specialists had to say. Invaluable can not capture how helpful they all were. So by attending 3 separate meetings, I had the opportunity to personally hear from over eight top specialists in our very rare disease. All of this is thanks to this non-profit driven by the unstoppable Muriel Finkel and her lovely husband Steve. Two people who turned the loss of someone they cared dearly about to an incredibly helpful organization to try and help others and the doctors who are trying to save us. Words can not capture how much this organization helps all of us.
I was diagnosed with AL Amyloidosis in March of 2017. I also have multiple myeloma. I have had a few different treatments and am now on Darzalex. I attended ASG on July 14, 2018 for the first time and was thrilled to meet Muriel and listen to Dr. Morie Gertz. His presentation to the group answered questions that I didn't even know I had. The attendees who shared their stories were a great benefit to me, and I am sure others, because I was able to see how many people have survived with good quality lives through many different treatments. I look forward to our next group in NYC in October but I know that I can always call on Muriel to get me any help I need in between.
The meeting in NYC, July 14, 2018 was so well attended allowing lots of conversation and insights from other patients and caretakers. The main speaker from the Mayo
clinic, Dr. Gertz, explanation of Amyloidosis was the clearest and most understandable I've ever heard. It was truly a hopeful and well worthwhile gathering.
Muriel, I can't thank you enough for starting this group. Over the years it has helped so many of us with Amyloidosis +\- multiple myeloma. I will be forever grateful to you and your staff for all the selfless work you do to get people on the right track. In honor of Five years in near complete remission and my 60th Birthday I have asked my family and friends to donate to the Amyloidosis Support Group. I couldn't ask for a better gift.
A good friend of mine received a very somber pronostic when diagnosed with amyloidosis: not curable and 2-3 years left. Thanks to this support group (found by googling) , I soon learned that, on the contrary, many people had survived this rare disease and, even better, thanks to a quick reply from a wonderful lady responsible for this support group, my friend was put in contact with a local survivor of the disease. This precious contact meant hope again for my friend as he was given tons of info on treatments (etc.) and names of local experts that he could contact for professional help. I am astonished by the fact that some medical professionals are unaware that they do not have the full picture of a disease... in fact, no one has a full picture of any disease. This support group is absolutely VITAL. Thank you to the wonderful people who run it and thank you to the wonderful people who offer their experience and guidance to their needy peers.
On January 18, 2013, my life changed. I suffered a stroke while eating dinner with my husband of 8 months. While at the hospital they questioned him of my family history, he turned to my sister Ellen Cameron for help. Ellen told the doctors that she had Amyloidosis and our mother and sister had passed away So I was immediately tested and confirmed to also having amyloidosis. My sister, probably had Muriel on speed dial during that time. emails were provided to both me and my husband for support groups in our area and we were put on the mailing list for the big meeting in October. We read several of the articles Muriel sent and worked with the team at University of Maryland and had my Liver Transplant October 2014. I wasn't able to attend the last meeting due to my husbands work schedule. But I participate in every study that is brought to me. And will continue to do so. I read all the emails and keep up with the articles and quiz my doctors on any new information. I have met Muriel and she is a one woman dynamo... she makes you feel very special, and she listens... as if she has nothing to do. Muriels department heads or staff are all helpful, supportive, understanding. Eager to hear your story, and comforting.
Support Group meeting attendees get educational and emotional support. They learn about the disease in plain, easy to understand language from doctors who specialize in Amyloidosis. Newly diagnosed attendees can ask questions and learn from those of us who have gone through various treatments that you can live a "normal" life. Every meeting reviews current and upcoming treatments as well as clinical trials. Additionally information about financial assistance is often discussed. These meetings are a must for anyone diagnosed with this insidious disease.
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!
Muriel Finkel was so exceptionally helpful when I called her 3 years ago when my husband was diagnosed with Amyloidosis. I was having trouble convincing him to get another opinion, and her advice helped greatly. I have been in touch with her since then and she is always gracious and caring with her advice.
they are extremely helpful and supportive no matter what kind of amyloidosis you have. Muriel and Paula are the very best of people:) would like to see if they ever get Dr. Gertz to come to a Mid-Atlantic meeting maybe Dr. Skinner
This organization is the best! When my husband was diagnosed with AMY, I was heading in 48 hours for a 6 week assignment overseas and needed answers quickly. I reached out to this organization and received a call back within 30 minutes. I knew where to go for treatment and evaluation and my husband, more importantly, was able to go to a support group in Boston before he ever started treatment. This group was extremely helpful and all of the support meetings are educational. It has meant a lot to us and I credit the care and support from BMC/Amyloidosis doctors and professional staff with his great survival. He has a vibrant and active life.
Muriel: First let me tell you how thankful we are to have you and your team supporting the patient community. Many praises for your efforts; you are second to none!
Now to my suggestion. The patient community needs an assigned member from your staff to help patients source and obtain charitable funding. I believe that there are numerous charities willing to provide grants to patients beyond the two charities that are typically recommended. This effort will not be easy. It will require someone with the ability to network well and the diligence to pursue this objective and not give up. Amyloidosis is typically a non-supported disease when it comes to charitable funding. Herein is the objective; create a list of 10-15 charities ( known to support Amyloidosis ) that can be provided to patients who are in need so they may apply for charitable funding.
My sincere thanks to you and your team!