Muriel Finkel, president of Amyloidosis Support Groups, has been advocating for the ATTR amyloidosis community for nearly 15 years.
Support can come in many forms. When one is diagnosed with a rare disease such as amyloidosis; just seeing the word amyloidosis on an 8 1/ 2 by 11 sheet of colored glossy paper next to the words, “YOU ARE NOT ALONE” or “MEETING” can be supportive. The diagnosis can be a punch in the gut to hear; but to then to walk out of the office and not see a brochure, or any piece of “official” paper among the hundreds in the doctor’s office or clinic, with the word “AMYLOIDOSIS”, can be the biggest let down of all.
The first Amyloidosis Support Group Meeting was held in Dallas,TX. It was hosted by La Donna Stockstill of Weatherford, TX and Muriel Finkel of Wood Dale, IL. La Donna has Amyloidosis and Waldenstrom’s. Muriel’s Uncle Norman Shurmaster died the previous year of Amyloidosis.
La Donna and Muriel were e-mail friends on the Amyloidosis list/serv and decided to get together with some others in the same predicament to share their experiences and provide support. Saturday March 13, 2004, was the birth of what would become one of the most popular support happenings for patients and care givers in the Amyloidosis world. The first Amyloidosis Support Group Meeting.