Photos and text used with permission of Kristin Quinn.
Kristin Quinn has known about amyotrophic lateral sclerosis (ALS) since her grandfather passed away from the disease when she was just five years old. She also lost her great-grandmother and aunt to the disease and her mother, Deb, now has ALS and uses a wheelchair much of the time. Living with loved ones affected by ALS has been stressful for Kristin and makes many things about her and her family's future uncertain. Despite the uncertainty, Kristin considers herself fortunate to have a close-knit and supportive family who takes things one day at a time.
Kristin's family on her mother's side is afflicted by familial ALS, which can be passed on via a genetic mutation from generation to generation. Recently, Kristin and her brother, Dustin, underwent genetic testing and learned he carries the family's ALS-causing gene mutation while she does not. Inspired to get more involved, Kristin gave testimony to the FDA in 2013 at the first ever public FDA hearing on ALS drug development. Following her testimony, several ALS organizations began reaching out to Kristin and she is now an ambassador for the ALS Therapy Development Institute in Cambridge, Massachusetts. In the fall of 2015, Kristin got involved with CDMRP ALSRP as a consumer reviewer. She says that being consulted on what research would be important to fund has made her feel empowered. The level of dedication and compassion of the scientist reviewers, and the fact that familial ALS had a voice at the table, was very encouraging for Kristin.
Today Kristin feels ALS research looks promising and there are many bright and passionate minds dedicated to finding a cure. She says advances in science, such as precision medicine, have given her hope for the future but there is still a long way to go to find a treatment or cure for all ALS patients. She feels the ultimate success will depend on funding through programs such the CDMRP ALSRP. Along with many others in the ALS Community, Kristin believes, "ALS is not an incurable disease, it is an underfunded one."
Last updated Friday, May 6, 2016