MANDEVILLE, La. — Amber Olsen’s staffing businesses, Nextaff Gulf Coast in Ocean Springs, Mississippi and Red Water Staffing in Mandeville, Louisiana, offer recruiting services for regional companies. But Olsen is using her business experience, organizational skills, tireless work ethic and profits from her Mandeville recruitment office to fund research to find a cure for her three-year-old daughter Willow Cannan who suffers from a rare, fatal, genetic condition called Multiple Sulfatase Deficiency (MSD).
“Our phone doesn’t ring unless we build relationships with candidates and companies to remind them to use our services,” said Olsen. “Finding a treatment is similar. Researchers are busy and working on other conditions, and we have to build relationships with them and bring Willow’s condition to their attention. As an entrepreneur, I don’t give up easily. I started my Mississippi company in 2008 during the worst financial crisis in U.S. history. Almost 10 years later we opened a new office in Mandeville and founded the United MSD Foundation.”
As the chief fundraising officer for the nonprofit 501c3 organization, Olsen said she will not stop until enough money is raised to facilitate research and create a cure for all children with MSD.
The United MSD Foundation’s goal is to raise $210,000 by Oct. 1, to fund the next stage of research. Olsen said $146,000 has been raised so far and a Warriors for Willow GoFundMe campaign is actively accepting donations and spreading the word about the disease.
“Problem solving is a day to day task in a business,” said Olsen. “Finding a treatment is one huge problem that can be broken down into a thousand small steps. One step at a time and eventually we will get there – gather experts, strategize a plan and figure out the solution.”
Olsen and her husband Tom Cannan live in Ocean Springs with daughters Kylee, 14, Jenna, 10 and Willow, 3. On May 9, 2016, Willow was diagnosed with the rare lysosomal storage disorder, which meant she was born with a SUMF1 gene mutation. Doctors found Willow’s body does not create sulfatase enzymes, which prevents her system from breaking down and recycling natural cellular waste. Over the next few years Willow will lose her vision and her brain will eventually shut down. Willow now walks with a walker, has trouble sitting or eating on her own and has never spoken. Most children with MSD die before their 10th birthday.
“The doctors told us to go home and spend time with our daughter, and that there was nothing we could do besides be with her and to make her comfortable,” Olsen said. “We found research online and that a treatment was close but lacked funding. We realized we had to develop a plan and put it into action, so we created the United MSD Foundation to raise money for a cure. We will fund the work needed to develop clinical trials to identify life-saving treatments for MSD, and we just hope it is in time for our daughter.”
Olsen said all tax-deductible donations to the United MSD Foundation go toward enhancing the quality of life for patients with MSD, funding research, facilitating the development of gene therapy treatments to create the first-ever treatment for MSD and providing resources for and building a network of MSD patients and families who are fighting to find a cure for this degenerative disease.
The United MSD Foundation has been successfully working with Dr. Steven Gray at the University of North Carolina School of Medicine’s Gene Therapy Center to create the clinical trials needed to get treatment to help Willow and other children with MSD.
While fewer than 50 children worldwide have been diagnosed with Willow’s specific condition, lysosomal storage disorders are believed to have an estimated frequency of one in every 5,000 live births. A cure for MSD could potentially result in the cure for multiple conditions, saving thousands of children’s lives.
“There’s been a resurgence of new types of treatments for these rare inherited disorders like MSD,” said UNC Gene Therapy Center’s Dr. Gray. “Gene therapy has been at the forefront of this resurgence and has proven to have outstanding results in many cases. Because we know what’s wrong and what genes are missing, I have high hopes that a cure can be identified. However, it all comes down to funding.”
Olsen expanded her staffing company to the Northshore in 2016 soon after Willow was diagnosed, and has been donating all of her profits to the United MSD Foundation.
“We set up Red Water to fund the foundation and research,” Olsen said of her Mandeville business. “Fundraising is very hard and in many ways not efficient. I know staffing and how to build a profitable company so that is my goal for Red Water – to create a stream of revenue to fund a treatment and save our children.”
MSD is so rare, Olsen said, large pharmaceutical companies have ignored their plight and families like hers have had to fend for themselves. She said a clear track to treatment includes generating safety studies, the manufacture of a clinical grade vector, obtaining FDA approval and treating children in a clinical trial.
“In the beginning, we hoped that finding a cure for MSD would save our daughter,” said Cannan, Willow’s father. “We just wanted her to live. But now we are fighting for all of the families worldwide whose lives have been devastated by this condition. We have to give them hope.”
“We named this campaign ‘Warriors for Willow’ because it seems like an insurmountable task, but my friends, family, business contacts and many, many in our community have stood up with us and have been fighting with us,” said Olsen. “MSD may be rare, and this battle may seem impossible but we plan to win for Willow.”