If you’ve been on our social media channels, you may have seen our posts about actor Dan Levy’s Omaze campaign to raise funds for the FSHD Society but you may not know his family story and his connection to FSHD.
Dan and his father, Eugene Levy, are actors and co-creators of Schitt$ Creek, a Canadian comedy series that has become a Netflix sensation. Now in its fifth season, the show was nominated for four prime-time Emmy awards this year. And the Omaze campaign itself has been a winner! Fans of the show buy chances to win a VIP trip to New York City to meet Dan at a pop-up set that recreates locations from the fictional town of Schitt’s Creek. Tickets to the pop-up sold out within hours, so the only way fans can enjoy this unique experience is to bid through Omaze. Dan’s promo video for the campaign has been viewed more than 350,000 times on Instagram, and the campaign has already netted more than $165,000 for the Society, with 18 days still left!
We are beyond grateful to Dan and even more so to his aunt, Gayle Divine, whom we have known for many years as part of the FSHD Society community. It is through her good offices that this Omazing miracle came to be.
Gayle’s journey began more than three decades ago, when she started to suffer mysterious symptoms. It took 12 years of traveling to doctors all over Canada and Los Angeles, before she was diagnosed. The last doctor she went to, Gayle sat in his office and was shown a book with photos of winged scapula and wasted legs. “He was very kind,” she recalled. “I cried. Not because I have this disease, but because I finally had an answer.”
At the time, Gayle was engaged, and she told her fiancé to think long and hard about marrying her. “You didn’t sign up for this,” she told him. He married her anyway. No one else in the family was affected, and the first time Gayle met anyone else with the condition was at an FSHD Society conference in Boston.
Gayle would talk about her condition with her sister Deborah, who is married to the actor Eugene Levy and whose children Dan and Sarah are also actors and co-stars in the show. The sisters wanted to raise awareness and funds for FSHD. “My sister was trying to figure out how to tap into the talent pool in our family, how to do it without spending a lot on an event,” Gayle said. And then Schitt’s Creek took off.
The show originated on Pop TV in Canada, but when Netflix picked it up, it soared to cult status in the U.S. “TV shows today are like rock bands,” Gayle noted. The cast goes on tours and the shows “sell out like crazy.” When Schitt’s Creek announced that 2020 would be its final season, Pop TV decided to tour a pop-up set featuring now-iconic scenes such as the Tropical Café and Rose Apothecary.
“We sat around to think, what can we do that’s the least amount of work, because they all work so hard all the time,” Gayle recalled. “And then Daniel decided to offer the pop-up experience on Omaze and donate the funds to FSHD.” She pauses—“I’m crying now,” she said apologetically. “It’s really generous, beyond what I could have asked of him ever. It’s really emotional for me. Very special for our family.”
“No one else in my family has FSHD but me,” Gayle told us. “It has been my struggle and my journey, although I do quite well. I have an electric trike and try to stay as healthy as possible. I’m lucky my family loves me enough to do this for me.”
We of the larger FSHD family are lucky too, that one of our own inspires so much love and beneficence.
You can support Dan Levy’s Omaze campaign here, for a chance to win this VIP experience!
This has been very encouraging to read. I too have felt very alone in my journey. I was super active and a runner and for through past 10 years all that has progressively ended and yet nobody could explain why. I sent thousands of rands to go for nice and more tests but here in South Africa in doctors were familiar with my symptoms and I have had 3 failed surgeries to my right scapula and the left one has presented with the same symptoms and this baffkes the doctors. Finally a surgeon was in touch with a surgeon from Mayo Clinic in the USA and he gave me answers and it involved FSHD.
My family have been confused because I seem to be the only one in the family which has this and I have been blaming myself for doing something wrong perhaps in my stringent exercise years and yet I have never been injured. Movement and walking has become more difficult and getting dressed and undressed as well as doing daily chores and just living takes a lot of effort and is sometimes impossible without help.
Thank you for this article.