My sister(Lisa) works for this organization and is doing a fabulous job! My Dad was a Fabry patient for many years until he passed away last year(2019). We need more nonprofits like this to help raise awareness of diseases that are not as well known. We also need to more scientist to help find a cure for this.
FSIG goes above and beyond helping their community to find treatment, referrals for doctors and financial assistance. Not sure where we would be today without the valuable information and support that the staff of FSIG has given us!
My husband of 35 years of age had his 3rd stroke in May of 2012. He was sent to Barnes Jewish Hospital in St. Louis, MO. It was there where he was finally diagnosed with Fabry. The doctor being a stroke specialist did not know much about this disease except for what he found on the internet. Worst case he would have 5 years to live. That evening I came home and read up on the disease as much as possible. My 2 sister en-laws and I all found the FSIG website and telephone number. Tired of reading about it I called the number. I spoke with Jack Johnson. While telling him about my husband and what he was diagnosed, I was not aware that Jack too has Fabry and 49. When he told me, it was a relief to speak to someone that KNEW what my husband has and understood. Jack sent us all kinds of resources, drove to our house to speak with my husband. My husband has had 2 more strokes since and 2 possible TIAs. Jack calls to check on my husband. My sister is having a benefit auction for my husband. FSIG has donated bracelets to sell to help raise money to help my husband. Jack has also been a great support for our family by e-mailing with family members. Without Jack we would not of had the correct up to date research on the disease, know of doctors to get in contact with, know of informational seminars that are available and know of other people that suffer with this same rare disease. Thank You So very much FSIG you have been of great help in our journey with this disease. You gave us hope when we thought there might not be. Thank you and God Bless.