Hope for Gus

Hi and welcome to my fundraising page. This November I will be participating in Everest to End Duchenne. Everest to End Duchenne is a 74 mile trek to Everest Base Camp  for boys with Duchenne muscular dystrophy who cannot do it themselves. All funds raised with this trek will go directly to fund medical research.


Why I'm climbing
Throughout my life I have been able to volunteer my time to help raise money and awareness for my brother's disease. I have spoken to congressional staffers, participated in the second largest student run philanthropy in the world, and served as a camp counselor to help give kids with diseases like my brother's a summer camp experience.


Now that I have graduated college, I have found that I have less free time than ever. Unfortunately, so does my brother. As time passes and his disease progresses we are starting to reach a point where new treatments may not be able to help my brother. As devastating as it is to know that the medical community is close to finding new treatments for Duchenne that my brother will be too old to benefit from, it is still massively motivating to hear that other families may be affected by my efforts. That is why this year I am pushing myself harder than ever to raise money and awareness for children
with Duchenne. 

What is DMD?
Duchenne Muscular Dystrophy (DMD) is a rare, progressive, muscle-wasting disease resulting from a lack of dystrophin, a protein essential for the repair and stability of muscle fibers. DMD is one of the most common genetic disorders diagnosed in childhood, affecting approximately 1 in 5,000 male births with an estimated 300,000 sufferers worldwide. Currently, there is no cure for DMD and those affected typically die before their 30th birthday.

DMD is generally diagnosed between the ages of 3-5 when boys start showing muscle weakness and delayed development. My family began noticing early signs of my brother’s DMD when he was almost three and had delays in walking and speech, enlarged calf muscles, and challenges with physical tasks such as running, stair-climbing, and balance. Often, boys with DMD also have neurological disorders such as autism, ADHD, and other behavior or learning disabilities that make it difficult for them socially and emotionally. As the disease progresses, boys lose the ability to walk, use their arms, and breathe. Heart failure is also universal in later stages of the disease.

During my brother’s lifetime, there has been tremendous progress made in treating Duchenne and research efforts are so promising that it is possible that DMD will one day be cured. Fundraising through Everest to End Duchenne gives me a way to help contribute to research and my brother’s legacy. Please consider helping in my efforts!

More information about Hope for Gus
Our mission is to raise research dollars and awareness of Duchenne Muscular Dystrophy. We are committed to funding research that will result in effective treatments in the near-term. Our specific focus is on treatments that will preserve muscles in DMD boys while researchers continue to search for the cure to DMD.

As almost everyone reading this knows, my family and I have been battling against Duchenne muscular dystrophy for over 15 years now. 
During those years, our son Christopher has lost many abilities, including walking, standing, dressing, raising his arms, and more.  Effects of the disease nearly killed him a few years ago and if not for emergency medical care and a lot of luck, we would have lost our boy when he was just 14 years old.  Tragically, many of the friends we have had since our entry into the DMD world have now lost their sons. 

Over the course of Christopher's lifetime, advocacy efforts and scientific breakthroughs have led to some approved therapies, and we are achingly close to more treatments for Duchenne.  Even though these advancements have not happened in time to change the course of DMD for Chris, younger boys and those who will be born in the future with DMD may very well have a much better outlook for their long term health and mobility.

I have spent a huge part of my life fighting this monster and I will be in this battle until every boy on Earth with Duchenne has a chance at a longer and healthier life.  

In November, I am undertaking my biggest physical challenge yet in battling DMD.  I have joined the Everest to End Duchenne team and will be trekking to Everest Base Camp in honor of the boys and men who can't make the journey, and for those who have been struck down by Duchenne in the prime of their lives.  

I'm raising money to benefit Hope for Gus, and any donation will help make an impact. Thanks in advance for your contribution to this cause that means so much to me.  All of the funds that I raise will go toward finding treatments for DMD. 

More information about Hope for Gus: Our mission is to raise research dollars and awareness of Duchenne Muscular Dystrophy. We are committed to funding research that will result in effective treatments in the near-term. Our specific focus is on treatments that will preserve muscles in DMD boys while researchers continue to search for the cure to DMD. Additionally, we hope to raise public awareness through fund-raisers, family events, and relentless advocacy.