"Only a cool $750,000 to go!”
THAT was Charlotte mom Allison Muedder’s reaction after hearing the Mark Cuban Foundation just gave her family a big donation. I love it. Because as insane as it sounds – ¾ of a million dollars is a TON of money – her goal has always been a whopping $2.5-million.
Allison and her husband Jon are trying to fund a clinical trial to possibly save her son, and many others like him. Hearing Mark Cuban (of Shark Tank fame and owner of the Dallas Mavericks) gave them $250k is reason to cheer.
“We believe this expensive trial can save lots of little boys living with Hunter Syndrome,” said Allison. “It’s going to take us – families – raising every single dollar. We aren’t going to stop.”
They’ve come incredibly far in a short time. (So far, actually, we’re going to talk about it tonight on WBTV News at 11p.)
Last summer, near the start of their campaign to raise $2.5-mill, Allison and Jon invited me into their living room to meet their son Finn. Hunter Syndrome affects 500 boys total in the U.S. Only boys. (Four are #MollysKids. See end of post.)
There is no cure for Hunter Syndrome. They said they were in a race against the clock.
Fast forward to now -- they have the attention of the FDA.
If they keep raising, they could get a clinical trial by mid-summer.
Next up? A fundraiser on June 16th in Weddington. Kid-friendly event from 8am-noon at the Weddington Corners parking lot. Antique cars, food, games, food truck, etc. All are invited.
Can’t wait to write the post that says they’ve done it. I think everyone who knows them has faith they’ll hit their goal.
Congrats, Finn and family, and thank you Mark. These many baby steps are equaling big ones.
**Editor’s note: This is about one of #MollysKids, children WBTV Anchor Molly Grantham follows closely on her Facebook page. It was first published there, which is why it’s written in a personal way. For years Molly has followed hundreds of kids with uphill medical battles. Find this story and updates on all #MollysKids here.**