HELP SAVE WILLOW
EVERY LIFE COUNTS
Willow Cannan was diagnosed in May 2016 with a rare genetic disease, Multiple Sulfatase Deficiency (MSD).
No treatment exists for this rare genetic disease that erodes all skills, knowledge, and body function until the child passes away, usually before 10 years of age. New children are being discovered with this rare disorder each year. Help us save these children. Help us fund a cure.
Learn more about Willow and her family
Why We Need Donations
We must hurry, Willow’s condition is regressive, unless she gets a life saving treatment she will suffer terribly, her body will break down and she will lose most of her functioning including eye sight, muscle use and brain use, resulting in death at a young age. Willow has excellent health insurance through Tricare/Humana. If there was a drug, Tricare would pay for it. The problem is there is not a treatment available. Because this disease is ultra rare – less than 100 known patients in the world – it is not profitable for the pharmaceutical companies to fund. We have to fund it ourselves. Our goal is to raise $1,000,000. Together we can beat this.
Children with MSD are born with a mutation of the SUMF1 gene which means the body does not create Sulfatases enzymes and is unable to break down cellular waste.
Willow's Current AssessmentWillow has started to regress, most children with MSD start to digress between 3-5 years of age.
How We Will Find Treatment
Willow's family is dedicated to finding treatment for their daughter and the other children affected by this horrible disease.
Together, we can beat this.
Identify the gene therapy experts who can develop a treatment.Run clinical trials to understand whether existing treatments for similar diseases can treat MSD.
Explore chaperone therapy with drugs in clinical trials for other diseases. We have formed a Charitable foundation
Join together with other families affected by MSD to coordinate our efforts to find treatments.
How You Can Help
Spread the word, Share our Facebook page, Donate or volunteer. There are several young MSD children that can be treated, disease could be stopped and lives could be saved.
Join the Cause
Any little thing you can do will help spread the word about Willow. Join the cause, sign up to be a volunteer, share our page on Facebook, or donate now. If you would like to make a donation directly to the bank here is the info:
Amber Olsen for Benefit of Warriors for Willow
PO Box 929, Ocean Springs, MS 39566-9982
Help us save Willow and other children around the world.
Join us to save Willow and other children around the world.