The minor league baseball season is over, which might be the only way they could get Markie DeVoe to leave the Lehigh Valley for this Saturday’s, October 7, fundraiser at waR3house3 in Swarthmore. Even so, he’ll surely check in on the major league playoffs a few times during the evening.
Markie is 12, a huge baseball fan. And he’s losing his sight, to a little-known disease called choroideremia which progressively damages the retinae. There is no cure yet, though gene therapies are in the trial stage.
Swarthmorean Dave Augustine is a big fan, too, of baseball — he met the DeVoe family at a Lehigh Valley Iron Pigs game this summer — and of Markie, whom he describes as “great fun, and a baseball fanatic. We talked all game long.” In the way that baseball has of bringing fans together, Dave and his fiancée, Rebecca, quickly got to know Markie, his parents, and the family’s circumstances. In addition to their connection with members of the Iron Pigs — the Phillies’ top minor league team — they’ve gotten together with minor and major league players from the New York Yankees organization.
And Dave decided, with the enthusiastic support of waR3house3 owner Rob Borgstrom, to develop a fundraiser in his hometown.
Saturday’s benefit concert stars singer-songwriter Jake Bellisimo, and will conform to the waR3house3 concert model, with an exception. Snacks provided, BYOB, doors open at 7 p.m. … but there is no admission charge.
The Saturday concert is to raise money for the Choroideremia Research Foundation. If you attend you will want to give, either at the venue, or through curechm.org.
Thanks to private investment and donations, clinical research has been promising, and clinical treatment may be available soon, though at substantial cost, even with insurance coverage.
“When Markie was first diagnosed, there was no cure, no trials. Now there’s a rainbow, and maybe the researchers are getting close to the pot of gold,” Mark DeVoe says.
Although the disease is progressive and Markie now suffers from night blindness, his vision is 20/20 in the daytime, and life is sweet: he is able to play town and tournament baseball.
For more information on the family and the challenge, visit Angelsformark.org.