This event is scheduled between : 08/16/2024, 4:00 pm to 08/17/2024, 9:00 pm
Every (Day/Date) - Around the Clock
This event was posted by Loving Loic Foundation
Description
WELCOME TO LOVING LOIC FOUNDATION AT ALPENGLOW
Founded as a celebration of our favorite place on earth, Alpenglow is all about creating unforgettable moments for those who love it here just as much. As Bozeman's premier Music & Arts Festival, Alpenglow showcases local talent, restaurants, and businesses alongside world-class artists. It's two days jam-packed with excitement for everyone.
Come meet Loving Loic Foundation at Alpenglow. Founded by Sherine and Mark Blackford in honor of their 3 year old son Loic, the Loving Loic Foundation seeks to develop a gene therapy for pantothenate kinase-associated neurodegeneration (PKAN), a rare disorder affecting up to three in one million children. PKAN is like ALS for children, stealing their ability to walk, talk and ultimately to live, often in the first decade of life.
With the help of the Loving Loic Foundation, a gene therapy has been developed and $1.4 million has been raised. Partnering with Oregon Health & Science University and UMass Chan Medical School’s Horae Gene Therapy Center, the Foundation leverages the expertise of experienced scientists to develop an effective treatment for PKAN. The immediate goal is to raise an additional $3.6 million get the cure to human clinical trials. Developing an effective gene therapy will not only cure PKAN, but opens the donor further to developing gene therapies for the over 30 million Americans affected by rare diseases.
See you in Bozeman.