Our son was diagnosed 23 years ago, when little was known about this disease. We didn't have a gene marker (let alone 2) for the disease. We had no idea what the impact of the disease might be for our son. Most of the doctors we saw knew as little as (or less than) we did. The TS Alliance has been a long-standing source of expertise and advocacy for our son and our family. We have benefitted in many ways, the least of which is the Alliance's commitment to research and bringing new knowledge and expertise to this disease. We are forever grateful.