Global Effort Moves MSD Treatment Closer To Clinical Trial, Cure For Mandeville Businesswoman’s Daughter
MANDEVILLE, LA – What started as a small movement between friends and neighbors in a South Mississippi town has now spread to international news, making headlines as far away as Argentina.
Amber Olsen, an Ocean Springs, Mississippi resident, and Mandeville, Louisiana business owner, founded the United MSD Foundation in August 2016 after her daughter Willow Cannan was diagnosed with Multiple Sulfatase Disorder (MSD), a fatal genetic condition. “I couldn’t just sit and watch my daughter die when we knew exactly which gene was causing her disease, and science has progressed to where a treatment could work to save her life,” Olsen said.
Olsen has traveled globally to reach scientists and physicians familiar with the disorder and its genetic cause in an effort to develop a treatment. Working with an Irish organization, the MSD Action Foundation, founded by a parent of an MSD patient, Olsen said proposals are being accepted and reviewed for development of a patient treatment. Dr. Steven Gray at the University of North Carolina School of Medicine’s Gene Therapy Center is currently working on the molecular level of treatment development, she said, and crowd-sourced funding has been the primary source of income moving this groundbreaking research toward a clinical trial.
In July 2016, Seba Ballauz, whose daughter Alma is also diagnosed with MSD, found Olsen’s foundation online and connected with her via social media. He began his own social media campaign using the hashtag #unacuraparaalma in his home country of Argentina to spread the word about MSD and raise funds to contribute to the work of the United MSD Foundation.
The #unacuraparaalma campaign has recently gone viral in Argentina, garnering support from Argentinian celebrities, sports personalities, news media and individual citizens. In multiple interviews, Ballauz has acknowledged that his hope for his daughter’s future lies in the work accomplished by the United MSD Foundation and the MSD Action Foundation.
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, Olsen said.