Tonight, the Gulf Coast community came together to support one little girl with a rare disease and others like her.
Tonight, the community came together to raise money and awareness for one little girl and the movement she started. Event organizer Greg Everhart said, “Well, it is an event, a musical event, to raise money for the MSD Foundation or Willow so we came up with the name ‘Music for Willow’ so we want to raise awareness and money from the event.”
Everhart put the ‘Music for Willow’ event together after hearing about Willow and her battle with MSD which is a rare and fatal genetic condition. Willow’s mother, Amber Olsen, said, “Greg Everhart is the one putting this on. He had never met us until yesterday so it is just an amazing charitable heart that people have.”
“I came across Willow’s story on Facebook. I’m actually Facebook friends with her mom. My daughter was in the hospital having a minor surgery and I came across the post and talked to some people I knew and decided to put an event together and raise money for her.”
Which is what this event was all about, community coming together to help each other. “It just makes us feel so good. It’s a tough thing to have a child that is so ill, but having the community support is just wonderful.”
Greg and the rest of his team plan to make ‘Music for Willow’ an annual event. “We thank the Gulf Coast community for supporting us so many times. We had a tragedy this week. One of our MSD children lost his life. It just reminds us how important it is and even how it’s just a few children right here on the Coast. We are the ones supporting them and are going to be the first ever clinical trial for our disease.”
For more information on Willow and the United MSD Foundation go online to curemsd.org.