The #PhelanLucky t-shirt fundraiser was created by Jen Randolph, PMS parent and Fundraising Chairperson after attending the family’s first PMSF International Family Conference. Jen was in awe of what other families were doing to support the efforts of the foundation and wanted her family to do their part.
Jen recalls, “Our middle child Jack had originally been diagnosed at the age of 14 months old with Ring 22. At that time, we were told that he was one of only 80 people in the world with this rare diagnosis. It wasn’t until Jack was 8 years old that he received the diagnosis of Phelan-McDermid Syndrome.”
To the Randolph family, the diagnosis wasn’t just a name for something they had been dealing with for so long, it was a sense of relief, a sense of belonging. Feeling part of an incredible group of motivated, strong, loving families, doctors and scientists who were working to create better lives for children, like Jack.
“We were ‘Feeling Lucky’ to have found the Phelan-McDermid Syndrome Foundation.”
In the winter of 2014, Jen and her husband were invited to attend a St. Patrick’s Day bar crawl with a group of friends. “We thought it would be cool if all 10 of us wore t-shirts that said, ‘Phelan Lucky’ on them.” For sure people would ask why the weird spelling of “Feeling” which provided an excuse to tell them about Jack and the rare syndrome he was diagnosed with.
Jen set up a booster page and sent it to our friends to order their shirts. Imagine the surprise when others started to see the page and began buying. 488 shirts to be exact, raising over $8,000 for the foundation that first year.
People rocked their shirts all year long, not just on St. Paddy’s Day. Jen began to ask people to tag her on social media so she could see where people were #PhelanLucky. People were raising awareness all over the globe!
PhelanLucky keeps growing every year and is now a foundation-wide event. One of our families even wore her shirt 365 days and created a spin-off awareness campaign through wearing the shirt everywhere in the UK. This year families in Australia will carry the 365 days of #PhelanLucky torch. It’s become contagious!