My Nonprofit Reviews

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.