The fourth annual PHight for Life event will take place in Rochester, N.Y., Sunday, Nov. 4, during pulmonary hypertension (PH) awareness month. The event is planned and hosted by Tom and Jennifer Garigen and their son, Tyler.
When Tyler had a rapidly progressing respiratory infection one day in May 2014, Tom and Jennifer took him to his pediatrician, from where he was rushed to the emergency room. After multiple tests, the results came in that Tyler had a rare disease, pulmonary arterial hypertension (PAH). “When our son was first diagnosed, my husband and I felt hopeless and lost,” Jennifer said. The doctors informed the family that because of increased research in PH, they could pinpoint Tyler with a correct early diagnosis.
Tom and Jennifer started to educate themselves about what their son’s diagnosis meant and realized how lucky they were to start Tyler on treatment early. They wanted to give back to the community and be useful in the fight against PH. Organizing a walk through the Pulmonary Hypertension Association (PHA) was their best opportunity to raise money for PHA and spread awareness about their son’s rare disease. The first event started small with their friends, family and a few members from the PHA Rochester support group. The event featured a walk, BBQ cookout, a panel of people with PH talking about their experiences and family-friendly activities for Tyler and other children with PH.
Tom and Jennifer continue organizing the walk each year and it has grown as a result of their relentless desire to spread awareness and fund PH research. Jennifer reached out to more PH patients from the surrounding support groups and encouraged them to join in. She also had the idea to include a raffle and auction to raise more funds at the walk. Last year, R. James White III, M.D., Ph.D., from the University of Rochester Medical Center Pulmonary and Critical Care Medicine team – a PHA-accredited Pulmonary Hypertension Care Center (PHCC) – voluntarily auctioned off chances for people with PH to throw a whipped cream pie in his face. Jennifer said, “Who doesn’t want an opportunity to pie their doctor?” The fourth annual PHight for Life event will feature an auction item for people with PH to dunk a doctor in a dunk tank.
The event has become an anticipated event with fun, exciting activities and PH awareness. “It may be a small amount in the big picture, but every drop in the bucket helps improve our son’s outlook and future,” Jennifer said about the event. To join Tyler and the Garigen family at PHight for Life on Nov. 4, register at www.O2breathe.org/PHight4Life. If you are unable to attend, you can still donate to the event.