Statement:

Parker Gallery presents Wishing Well, a benefit exhibition to support gene therapy research for an ultra-rare genetic disease called SELENON-related myopathy. Our son, Max, was diagnosed with this condition when he was 6 months old and we are battling its effects every day.

We have spent the past year speaking with clinicians, researchers and the SELENON community to understand how we can effectively navigate a path to treatment.

SELENON is a debilitating neuromuscular disease that currently has no cure or treatment. While the scientific tools exist to develop treatments, the resources do not. Due to its rarity (1 in 2,000,000), support for research needs to be driven by parents, families and loved ones.

We are confident that collectively we can make a significant impact towards advancing a cure, and changing the lives of all families affected by this disease. We recently co-founded Giving Strength, a 501c3 foundation, and established a fund with the Beggs Laboratory at Boston Children’s Hospital.

Beggs Laboratory is currently the only lab in the U.S. researching gene therapy treatments for SELENON. We have been overwhelmed by the support and generosity of the artists, friends, family and our community for their deeply meaningful contributions. 100% of the proceeds from Wishing Well will go towards supporting and accelerating gene therapy research.

–Madeline Hollander & Sam Parker