The Waterloo Region Home Builders’ Association (WRHBA) hosted its Fall Charity Golf Classic in late September at Whistle Bear Golf Club in support of Cystinosis research.
The annual event, now in its eighteenth year, provides a platform for a community based charitable organization to elevate awareness of their cause and to receive a donation to further their work. More than 130 members and guests came together in support of Gabbie’s Wish – to Cure Cystinosis, the Association’s 2015-16 Charity of Choice. To mark the occasion, WRHBA’s president Graem Jackson presented a $5,000 cheque to the Cystinosis Research Foundation in recognition of Gabbie’s Wish.
Seven-year-old Gabbi Strauss’s mother Jody shared with association members how their family’s world changed with just one word – Cystinosis. Ever since her daughter’s diagnosis at 15 months, she and her husband, Trevor and their extended family members have dedicated their lives in an effort to find a cure through establishing their charity Gabbie’s Wish and fundraising for Cystinosis research, the WRHBA said in a news release.
Cystinosis afflicts children right from birth, immediately beginning to destroy every one of the body’s 78 organs; it causes cells to crystallize and die slowly, destroying organs including the eyes, kidneys, muscles and the brain. It is a rare orphan disease meaning that it has not been “adopted” by the pharmaceutical industry so research dollars are hard to come by and the treatments that are available are expensive.
However, due to the valiant fundraising efforts such as those by Gabbie’s family members, hope is on the horizon. The Cystinosis Research Foundation is leading progressive research from around the world and a cure is now going through the FDA safety study process for human clinical trials.
For more information or to make a donation, visit the association’s website at www.wrhba.com.