Gus is a happy, curious 17-year old boy. He is in the 10th grade and is involved in Yearbook Club, Diversity Club and loves to fish, make music and draw. He enjoys cooking and experimenting with the weirdest food possible and he also has many travel plans for the future to find unique food around the world.
He is starting to think about college and he wants to be a music/filmmaker or work for the Department of Natural Resources.
But Gus has Duchenne Muscular Dystrophy, a degenerative muscle-wasting disease and the number one genetic killer of children in the world.
They told us that Gus would be in a wheel chair by 12, that his life span will be significantly decreased by DMD, as it can affect the heart and lungs.
We think they’re wrong, and a lot of brilliant researchers agree with us. Research is more promising today than ever before. Doctors understand DMD like they never have. Gus is in a race against DMD and we are determined to do everything we can to help the researchers who will allow him to win that race.
When Gus was born on May 10, 2005, we knew our family was complete. We had been blessed with three beautiful children and even though Gus was five weeks premature, we knew he would eventually catch up.
He was a smart and snuggly baby, late on all of his milestones, but seeming to thrive anyway. When he entered preschool, he started physical therapy to help him “catch up.”
When he was four and a half, Tonya made an appointment for him to see a neurologist. To this day, she is not exactly sure why she felt compelled to make this appointment. None of the teachers or physical therapists who worked with Gus suspected anything out of the ordinary. Perhaps she just had a feeling…
That appointment spiraled into three weeks of testing, fearing the worst, and dreading the unknown. By the time his diagnosis of Duchenne Muscular Dystrophy was confirmed, we knew it was the worst possible outcome for our son.
After the tears and shock, we started researching. What we found, was that there were numerous potential treatments and maybe cures out there, but they weren’t being funded. DMD is what is often called an Orphan Disease, meaning, “a disease that has not been adopted by the pharmaceutical industry because it provides little financial incentive for the private sector to make and market new medications to treat or prevent it.”
This prompted us to immediately begin the process of starting our own foundation to raise money and fund research. It’s our only hope to save Gus — and ALL children who suffer from Duchenne Muscular Dystrophy.
The mission of the Hope for Gus foundation is to improve outcomes for those with Duchenne muscular dystrophy, a fatal genetic disorder with no cure.
HFG will raise and distribute funds for medical and scientific research, disease awareness, medical care, and improvement of quality of life for Duchenne patients and families. Hope for Gus is also focused on developing programs to help alleviate the vast unmet needs in the DMD community.
We are commited to fully allocating the majority of funds raised, in order to achieve this mission.
Our Board Members