The National Organization for Rare Disease (NORD) estimates that one in every 10 Americans is diagnosed with a rare disease. Together, this adds up to nearly 30 million people, which when holding hands could circle the globe one and a half times.
For Amber Olsen, owner of Nextaff Gulf Coast in Ocean Springs, the reality of a rare disease has not only been felt right in her own home, but has connected her globally to a movement to save the lives of children.
In 2015, Amber’s daughter Willow Cannan was diagnosed with the terminal genetic condition, Multiple Sulfatase Deficiency. This condition leaves a person without the normal enzyme activity that filters out the the natural waste by-product that is created by each cell within the body. The waste builds up over time, in effect clogging systems like the brain, muscles, eyes and others, and prevents them from working properly. Children with MSD do not live to see their 10th birthday, as their entire body starts to shut down with built up waste product.
They told us there was nothing we could do. Just go home and be with your daughter.
— Amber Olsen
“They told us there was nothing we could do,” Olsen recalls. “Just go home and be with your daughter.” Having an entrepreneurial spirit, a business mind, and a mother’s determination, Olsen immediately went to work learning as much as she could about Willow’s condition — the science behind it, and any possible way forward.
This led her to start the first ever foundation for MSD in the country, The United MSD Foundation. She began collaborating with scientists, doctors and other parents to connect the existing research to the patients suffering from MSD, and their families fighting to save them.
The United MSD Foundation has been instrumental in connecting families of this rare disease to one another via social media by advocating for awareness in the medical community and driving forward the research that will lead to viable clinical treatment for the disease.
Olsen’s persistence has connected her with department heads at the National Institutes of Health and researchers at the best hospitals across the nation. She’s even had discussions with the U.S. Food and Drug Administration about the process of bringing treatment to trial.
The disease process is well studied and understood, and with recent medical advances in gene therapy, the reality of treatment is finally achievable: “Scientists told me if I had three million dollars, I would have a treatment for Willow in 18 months” Olsen says.
Now, more 500 days later, she continues to fight with as much tenacity as she had on day one, despite her own daughter’s decline. Her fight which began on the Mississippi Gulf Coast for one sweet girl is now so much more. It’s a movement that gives hope to families and children touched by MSD across the globe.
MORE INFO
The United MSD Foundation was established to enhance the quality of life for MSD patients by facilitating the development of treatments, funding research, providing resources and building a network of MSD patients and families. To learn more about The United MSD Foundation or to make a donation, visit www.unitedmsdfoundation.org or visit “Cure MSD -Warriors for Willow” on Facebook at facebook.com/warriorsforwillow.