Page 63 - South Mississippi Living - April, 2019

3
diseases added to the list every year. “Doctors have known about MSD since the ’70s. They discovered the
(defective) gene in 2002, and began gene therapy on a mouse in 2008.” Olsen regularly attends conferences and briefings led by medical personnel, and she speaks about the disease like a seasoned professional. The mother of three, who remains
a small business owner and active community leader, also has been raising funds like a pro.
Olsen and Cannan, who have been married for 18 years, started the United MSD Foundation, a nonprofit organization that was established to bring forward viable clinical treatment options for those with the disease.
The research is also being used to help with other similar lysosomal storage diseases.
The Foundation has already raised $500,000 with an additional $1.6 million given by an “angel donor,” but still $750,000 is needed to begin the phase one clinical trial of gene
therapy, which could happen as soon as early-to-mid-year of 2020. “I call it a treatment, but this is an experiment to see if it is a treatment,” Olsen explained, adding six children with MSD will be selected for the trials. And even with all the work Olsen and Cannan have done to get to this point, there is no guarantee Willow will be one of those children.
At the time of the trials, doctors will have set criteria that will determine who participates. They may want children who are at a certain level with the disease, children of a certain age group or children on whom they feel the testing will work best; and at this point, the realistic truth is that may not include Willow.
If Willow is chosen for the testing and it is successful, the goal is that the treatment will stop the disease from progressing. Then, Olsen said, hopefully, Willow’s body will work to restore her lost skills.
Cannan said they were both asked by a scientist in England what they were trying to accomplish, as a cure may not come in Willow’s time. “We both said whatever was done, we didn’t want another parent to suffer hearing
that their child had MSD. Amber is much more tenacious with the idea and is such an unstoppable force. She just will not take no as an answer.”
Olsen said, “I feel a general sense
of responsibility for these (MSD) families. I know too much to let it go. I feel I need to step up for these people and their children.”
She tries to not think too much about whether Willow will be one of those selected from the network of MSD families. Her focus right now continues on educating others about MSD and raising the money to get the clinical trial started.
Money raised by the grass-
roots Foundation through various fundraising efforts such as the
recent Zebra Run for Rare Disease, does not go to Willow or her family. While certainly thankful for the generosity shown to her, Olsen feels bad when people express they want their donation to be used for Willow directly. “What the money does is go for funding the research for the cure that will save these children. That’s the bigger picture. We need to get the medicine.”
For more information on Willow and The United MSD Foundation, or to donate, go to www.curemsd.org or follow their Facebook page at www.facebook.com/CUREMSD.
FOR MORE REFLECTIONS OF THE GULF COAST >> www.smliving.net
April 2019 • SOUTH MISSISSIPPI Living 6
Willow leads the way