A Special Update from Joe!
When I began this special project to honor my brother Gavin just a few short months ago, it was my greatest hope to raise at least $16,000 in honor of his 16th birthday. I can’t begin to thank everyone who helped us to get there AND blew our whole family away by helping us to reach our second goal ($26,200) to reflect the 26.2 miles that make up the Boston Marathon’s length. I am so inspired by the support and so grateful for the donations, the encouragement, and the momentum of this effort. With the marathon less than one month away, I am increasing my goal to $32,000 - double my original goal. If you have already donated…. THANK YOU! If you have not, join me in raising awareness and much-needed funds in my “Race Against PWS”!
My name is Joe Gill and I’m 22 and live in Hanover, MA with my family. I’m extremely excited to announce that I will be running the 2022 Boston Marathon in honor of my younger brother Gavin and to raise funds for and awareness of Prader-Willi Syndrome (PWS), which Gavin was diagnosed with shortly after birth. This year, Gavin turned 16 and I’m on a mission to raise funds to celebrate this tremendous milestone. Watching Gavin grow up and seeing the struggles and ongoing obstacles that PWS presents have been a constant reminder of his resilience in the face of this rare disease, as well as a reminder of the importance of a loving supportive family- which we are so fortunate to have. I’m so moved at how quickly we reached my original goal of $16,000 and I’m excited to see how far we can go!
PWS is a rare genetic abnormality on the 15th chromosome effecting 1 in 15,000 births. The symptoms of PWS cause physical and intellectual delays, hypotonia (low muscle tone), difficulty with the hypothalamus (a part of the brain) regulating body temperature, hunger, thirst, threshold for pain, sleep-wake balance, emotions, fertility, and more. The hallmark symptom of PWS is hyperphagia (an inability to feel full) for which there is currently no available treatments. Watching Gavin navigate through life dealing with these challenges (endless doctor and therapy appointments, struggles with simple things many of us take for granted) has been an inspiration and a bright light of positivity for me and everyone he meets. As his big brother, I want to do all that I can to give him hope for a brighter future!
While the marathon itself takes place on April 18th, I am eager to begin this effort early so that we can reach and surpass our goal of raising awareness for PWS and raising much-needed funds for Prader-Willi Syndrome Association USA (PWSA | USA), a critical resource for PWS families across the country. Please help me celebrate Gavin while supporting an important cause that me (and my whole family!) care so deeply about.
Special thanks to the Boston Police Runners Club for making this opportunity possible and thank you to all of my family and friends who are making a commitment to support my efforts. While there’s not cure for PWS, we’re still hungry for one and we won’t stop until it is found!
To steal a page from my favorite television show “The Office”, “the dictionary defines superlative as of the highest kind, quality, or order, surpassing all else or others; supreme.” I define it as Gavin Gill. “As a zoo keeper, as a leader, as a brother, and as a friend, he is of the highest kind, quality, and order, supreme.”
I love you Gavin!