United MSD Foundation

Every Life Matters

MSD (Multiple Sulfatase Deficiency) is a genetic condition that leaves a person without the normal enzyme activity to filter out the natural waste by-product created by each cell in the body. As the waste builds-up over time, all body systems (like the brain, muscles and eyes) stop functioning properly. As a result, most children do not live to see their 10th birthdays, but there is hope! The cause of this disease is known; science and medicine have progressed to treat similar diseases; we can turn the dream of treatment into a reality for these children. We need your help!

Together we can! #CUREMSD


Providing community and resources.


Ongoing collaboration with scientists and doctors.


The reality of treatment is finally achievable!


Informing patients, parents & the public about MSD.

Parents Creating Change

After her daughter, Willow, was diagnosed with the progressive disease, Amber Olsen immediately went to work learning as much as she could about MSD —the science behind it, and any possible way forward. This collaboration with scientists, doctors and parents connected by the disease led her to start the first ever foundation for MSD in the United States.

  • Connecting families
  • Advocating for awareness in the medical community
  • Driving forward research that will lead to viable clinical trials
More about us

Together we can! #CUREMSD

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Cherish Each Moment

Less than 100 current known cases of MSD globally
Average child’s lifespan
Funds needed to bring treatment out of the lab and into our kids

A rare, fatal, inherited disease, MSD has no current treatment available.

United MSD Foundation is the first organization in North America dedicated to funding research and facilitating the development of a treatment for MSD.

Phase One: Treatment Created and Initial Tests Run

Projected Completion Date: April 2018

Phase Two: Treatment Replicated and Test in a Secondary Safety Step

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