Page 129 - South Mississippi Living - December, 2019

GivingBACK funding a cure
United MSD Foundation
“We are funding a cure, we are not looking to find a cure,” she said. “We are getting ready
to do six clinical
trials in 2020. We
are about $600,000
short of our goal of $3 million. And when we meet that goal, we will need to continue to raise more money.”
When Olsen’s daughter, Willow Cannan, was diagnosed with MSD in 2016 at age 2, she will be the first to tell
you that she knew very little, if anything, about the rare MSD. But instead of just letting her daughter succumb
to the disease, she decided to fight, not only for her own child but children around the world. MSD is a chronic fatal disease – most children who get it do not live past the age of 10. Because of MSD, Willow does not speak and cannot walk or run. She also eats from a feeding tube.
“I don’t know that Willow will make the clinical trial – I don’t pick who gets to do that,” she said. “But we will keep on fighting. People have been so gracious and kind, especially through social media. Every time someone does a birthday fundraiser on Facebook and we raise $300, it helps tremendously. Every $10 donation that someone makes is helping to bring these clinical trials to fruition.”
If you would like to give to United MSD Foundation, you can do so at curemsd.org or on the Cure MSD Facebook.
United MSD Foundation | 228.327.6916 | www.curemsd.org
story by Jeff Clark photos courtesy of United MSD Foundation
Every dollar counts. That’s the message United MSD Foundation (Cure MSD) founder Amber Olsen wants people to know. Olsen also wants to make it clear that every dollar Cure MSD raises is going to funding a cure for MSD, Multiple Sulfatase Deficiency, a rare genetic disorder that affects children in a way that Alzheimer’s or Parkinson’s disease affects adults.
Willow Cannan was diagnosed with MSD, a rare genetic disorder, at age 2.
FOR MORE REFLECTIONS OF THE GULF COAST >> www.smliving.net December 2019 • SOUTH MISSISSIPPI Living 129