We are very excited to announce the inaugural Drive for Dup15q golf event to benefit Dup15q Alliance.
Full-day registration includes golf, cart, lunch, cocktails, dinner and entertainment. Golf-only and dinner-only options are available. All golfers are welcome. Format is a four-person scramble. Various sponsorships are also available. Space is limited, so register today.
We are also looking for silent auction items, golfer prizes/giveaways, raffle items (including monetary donations, products or services) and hole sponsors. Contact Mike at firstname.lastname@example.org or (617) 413-6551 for more information.
"Super Duper" is a label that the parents of children affected by dup15q syndrome affectionately give our kids. It is a perfect term to describe my son, Zachary, who was diagnosed with dup15q syndrome at the early age of 4. Zachary is a wonderful boy and son. He sees and observes things on a daily basis that surprise his brother, sister and me every day. We are very fortunate because dup15q syndrome can be very crippling. Once we learned that Zachary has this rare chromosomal disorder, my family discovered Dup15q Alliance and the community of awesome Super Dupers and their families. We are constantly learning and supporting each other. Our hope is to one day find treatments that will enhance the lives of our Super Dupers, including the many that are currently undiagnosed. Dup15q Alliance has become an important part of my everyday life. By combining my family's favorite things - Zachary, Dup15q Alliance and golf at Hop Meadow Country Club - I hope to raise money and awareness for my favorite cause.
We appreciate your participation and donations. Dup15q Alliance is a 501(c)(3) organization and your donations are tax-deductible as allowed by law. The Alliance is mostly run by volunteers, so your gifts directly provide programs and services to families affected by dup15q syndrome. Many families struggle every day just to manage the care of our special children. While we have a great need of support today, we also have a hope that through Dup15q Alliance's research efforts, we will one day have targeted treatments for our children. With your help, we can create a better tomorrow for all those affected by dup15q syndrome. Thank you for your support!
Dup15q syndrome is a rare genetic disorder with symptoms including developmental delays, cognitive impairment, seizures, autism and low muscle tone.
Dup15q Alliance provides family support and promotes awareness, research, and targeted treatments for dup15q syndrome. Dup15q Alliance is a 501(c)(3) organization and your donations are tax-deductible as allowed by law. The Alliance is mostly run by volunteers, so your donations directly provide programs and services to families affected by dup15q syndrome.
Dup15q Alliance helps families like ours who struggle every day just to manage the care for our special children. Since our first golf event was held in 2010, many exciting things have happened. For example, Dup15q Alliance has facilitated the creation of nine dup15q clinics and held numerous family conferences and regional gatherings. Meeting with other Dup15q Alliance families helps us to feel less isolated in our journey with this rare disorder. We rest easier knowing which treatments and therapies work best for our kids. On the research front, Dup15q Alliance has funded the creation of a dup15q mouse model at Texas A&M University, an autism study at UCLA and two fellowship awards. By increasing the scientific knowledge of dup15q syndrome, our hope is that one day we will have treatments targeted specifically to the genes affected in dup15q syndrome. Together we can make a difference!