By Jacki Thornburg, Broker/Owner of EXIT Realty Heart Properties in Ocean Springs, MS
In 2016, my good friend’s daughter, Willow, was diagnosed with a very rare genetic disease called Multiple Sulfatase Deficiency (MSD). This disease causes neurological and skeletal deterioration and impedes every part of a child’s development. Children with this disease do not have a long life expectancy and will eventually require constant care. Rather than accept that her child was going to deteriorate in front of her eyes with no hope, my friend started doing research and grassroots fundraising, determined to find a cure for this disease.
After meeting with doctors, researchers, and parents all around the world caring for children with MSD, she founded the United MSD Foundation. In the last 7 years the foundation has become an essential, global support system for parents caring for children with MSD, and the push to find a cure has never wavered. The research has made incredible progress; they have found a potential cure and completed all trials necessary to prove safety and effectiveness. The next step is first-in-human gene therapy clinical trials which will see real children suffering given a chance at a happy life. Though Willow will never have a chance at a normal childhood, this organization is near and dear to my heart because no child should have to suffer such a fate.
Zebras are the mascot of the rare disease community. Medical students are taught to look for horses rather than zebras, meaning they should look for more common diseases first, so the United MSD Foundation has adopted the zebra as their mascot and so have we.
<For our Spirit of EXIT fundraiser,> agents collected donations and silent auction items from community members and local businesses. They also raised awareness for this important cause with social media posts, videos, and our very own zebra (me, in a giant blow up zebra costume) making special in-person visits to connect with the community and thank donors for their support. At the actual event, which was held the night before the United MSD Foundation’s annual Zebra Run, we are at a local business downtown selling food, drinks, and raffle tickets while participants bid on silent auction items and enjoy live music.
The funds raised from Zebra Fest will be dedicated to supporting newly diagnosed families with patient navigation, building new resources and funding new and ongoing research to move closer to first-in-human gene therapy clinical trials. Until a cure is available to all families, the foundation will ensure no family takes the journey alone.
A portion of every transaction fee received by EXIT Realty Corp. International is applied to its charitable fund. Through the Spirit of EXIT Charitable Program, EXIT offices and associates can raise money for local, approved, registered charities and apply to EXIT’s head office to have those funds matched from the company’s pool of funds. Jacki and her team of professionals hoped to raise $2,500, which EXITs head office was proud to match, however they went above and beyond and raised $7,800, for a total donation of $10,300 to the United MSD Foundation.
“With your generous support, we will be able to fund vital research, which will lead to funding a cure for MSD in our lifetime. Your donation will also improve the lives of those impacted by MSD through education, caregiver support, and additional resources. You make it possible to give families hope and eliminate this fatal disease for future generations,” said Sarah Cortell Vandersypen, Executive Director, United MSD Foundation.
