Gavin Flying For A Cure was founded to honor Gavin Quimby(Super Gav) and to bring awareness to Metachromatic Leukodystrophy(MLD). MLD is a devastating, genetic, neurological disease that Gavin was diagnosed with at age three and died because of complications from treatment at age five. His parents Nick and Shanna Quimby along with Senator Jeremy Miller and Minnesota's Newborn Screening Committee passed a bill named The Super Gav Act to test newborns for other rare diseases, MPS-1, Pompe Disease and Adrenal Leukodystrophy. This Newborn Screening bill was made to detect and treat diseases successfully before symptoms present. Since The Super Gav Act came into effect in February 2017 over 61,000 babies have been tested and 12 have come back positive for ALD. These children are now being monitored at The Leukodystrophy Center at the University of Minnesota Masonic Children's Hospital. These children now have a future because of Newborn Screening.
On June 29, 2019 starting at Levee Park there will be a Super Gav 5K Run/Walk and kids run to raise money for The Gavin Quimby Research Fund. The 5K will be in partnership with Leighton Broadcasting and the annual Craft Beer Fest. Put on your running shoes and get your beer koozies ready for a day of exercise and adult beverages fun!
This event is still a work in progress and more information will be posted in the near future. Thank you for your patience.
The Gavin Quimby Research Fund was established by The Calliope Joy Foundation in 2018 to raise money for the University of Minnesota's Masonic Children's Hospital. The money is for leukodystrophy gene thereapy research and doctors at the Leukodystrophy Center. Gavin was treated there by Dr. Paul Orchard and other truly exceptional specialists for a bone marrow transplant to treat MLD. Although the treatment was unsuccessful for Gavin we will always hold these wonderful people in our hearts for all that they did for us. The staff at the U of M Masonic Children's Hospital always had hope, strength, love and endless fight to give Gavin the best treatment possible. Because of this, we want to honor our son by helping other children like him by utilizing The Super Gav Act for early Newborn Screening detection for leukodystrophy and Gavin's Research Fund to keep the treatments innovative.