Phelan Lucky
What Is Phelan Lucky?
#PhelanLucky is an annual campaign that raises funds and awareness for Phelan-McDermid syndrome. It has become the Phelan-McDermid Syndrome Foundation’s (PMSF’s) top fundraising event while increasing awareness of Phelan-McDermid syndrome on a global scale. To the Randolph family, their son, Jack’s, diagnosis of Phelan-McDermid syndrome 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 together to create better lives for children, like Jack.
The #PhelanLucky t-shirt fundraiser was created by Jen Randolph, a Phelan-McDermid syndrome parent after her family attended their first Phelan-McDermid Syndrome Foundation (PMSF) International Family Conference. Jen was in awe of what other families were doing to support the PMSF and she 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 a 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 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.” She knew people would ask about the weird spelling of “Feeling”, providing them all the opportunity to tell people about Jack and his rare diagnosis. Jen created a fundraising page for her friends to order shirts. Imagine Jen’s surprise when others started to see the page and began buying! 488 shirts to be exact, raising over $8,000 for the foundation the 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 Phelan-McDermid syndrome moms even wore a shirt for 365 days and created a spin-off awareness campaign in the UK. Families in Australia are now carrying the 365 days of #PhelanLucky torch. It’s become contagious!
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Phelan Lucky shirts sold.
It's not just a shirt
People rock their shirts and #PhelanLucky gear all year long to show support and actually change lives! People are raising awareness all over the globe! One of our Phelan-McDermid syndrome moms even wore a shirt for 365 days and created a spin-off awareness campaign in the UK, then passed the touch to families in Australia and around the globe. It’s become contagious.
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raised to improve the lives of those affected by Phelan-McDermid syndrome.
Are You Phelan Lucky?
The Phelan Lucky Campaign happens once per year, in January, and lasts 22 days only. For those who miss out, there is also a “Half Way to St. Paddy’s Day” sale in early August where you can get embroidered items.
When the campaigns are open, you may click on the buttons below to buy your Phelan Lucky gear.
Celebrity Corner
Phelan Lucky 365 Days Worldwide
Family and friends of those affected by Phelan-McDermid syndrome rock their Phelan-Lucky shirts around the world to spread awareness and to let the world know they are Phelan Lucky to be in such a fantastic supportive community. If you would like to share your photo and your story, send photos and any text to the page’s messenger account and we may post your story!
How You Can Join the Fun
A few examples of how you can help the #Phelan Lucky campaign are provided below.
Please contact Jen Randolph for more information.