The 2015 Everest Team
Based on my personal relationship with the Dreher family, I know of the monumental struggle and everyday heartache that afflicts all parents of Duchenne boys. Helping to end this struggle and heartache are significant motivators for me to do the “Everest to End Duchenne” challenge. This 12 day hike is a comparatively small task on my end compared to the struggle these boys face every day. My goal is to shed more light on this terrible disease. With vital funding and research, there will be a day in the not so distant future where Duchenne boys are without worry and can dream of a life of unlimited accomplishment.
Hello, I’m Chris Balch.
I am a former instructor for the National Outdoor Leadership School (NOLS) and I was a teacher and outdoor leader for 40 years. I taught at public and private schools around the northeast, and was the founding director of the Wild Quest Education Project for over a decade.
My connection to Duchenne is through my good friends, Steve and Tonya Dreher, and their son, Gus. When you get to know these folks it becomes impossible to do anything but get involved. They are strong, spirited and dedicated to ending Duchenne’s Muscular Dystrophy.
In 2013 I hiked 100 miles of Long Trail and raised a little over $2,500 for Hope for Gus. In 2014 I hiked again — over 250 miles this time, and raised $10,000 for Hope for Gus. Steve Dreher arranged for matching grants and the amount doubled to $20,000. This year I have raised $5,000 for the Everest Trek. All of the money will goes directly to DMD research.
I might be getting older, but I’ll keep on hiking and raising funds for Gus and the other kids like him from around the world until we finally have a cure that will allow these children to live happy and healthy lives.
My name is Tonya Dreher and I am the director of the Hope for Gus Foundation and Gus’ mom. When Gus was diagnosed with Duchenne Muscular Dystrophy 5 years ago, the doctors told us there was nothing we could do. But we refused to believe that was true. We fight for his life everyday and Everest to End Duchenne is my way of pushing myself to do something that will be difficult for me, but impossible for my boy to ever do, because of DMD. For more details, please read Why Everest?
My name is Anna Johnston and I’m an Outdoor Education student at Sterling College in Craftsbury Common, Vermont. I am passionate about the outdoors, the environment, and mountain climbing. Gus’ dad, Steve, was a teacher in my high school and that is how I first learned about Hope for Gus. Everest to End Duchenne is a great opportunity to raise money and awareness for Duchenne Muscular Dystrophy, and trek in Nepal, an amazing experience!
My grandson Griffin was diagnosed with DMD almost 2 years ago. He is still doing ok, but struggles with stairs, etc. If we don’t solve this Duchenne koan in a few years he’ll be too weak to walk, and he’ll have trouble drawing a full breath. I will need to carry him, his dad Brian, and his mother, my daughter Maggie, up that mountain. One of my daughters asked whether I was afraid of this trek. No. If at altitude I find myself weakening, and unable to breathe, I’ll think of Griffin, and he’ll carry me. He has DMD, but it does not have him. He is fearless, and my hero. How can I be afraid of anything?
My son Griffin was diagnosed with Duchenne in January of 2014. Prior to his diagnosis, I really had no idea what this disease was or that it even existed. Like many, I had seen the Jerry Lewis telethons but didn’t truly grasp or understand what muscular dystrophy was. Now that I know first hand what it is and how it will progressively effect my son, I feel acutely aware of how many people have no knowledge of Duchenne. I have struggled with feeling helpless to do anything to protect him since he was diagnosed. I can sign all the petitions in the world, but it doesn’t feel like enough.
I wanted to do something big that would have a real impact. I would do anything. If a cure was discovered on Mars I would go there. Trekking to Mount Everest feels like an accomplishment, something to show the world that I would go to the ends of the earth and back for my son, and something that will help raise awareness and funds, and support the research that will lead to a cure.
I met Tonya 25 years ago when she was an exchange student in my home country of Wales. We kept in touch sporadically, and I recently met up with her while she was attending a Duchenne conference in London. It was a delight to see her and be reminded again of her warmth, kindness, energy and immense sense of humor. Having known what Tonya has gone through and the challenges the family has faced since our college days in Wales, it was an absolute honor to be asked if I would be interested in filming the Everest to End Duchenne Trek. Without hesitation I said yes.
About me: My background is in nature conservation. However, 10 years ago I followed my passion of filming wildlife and started producing films for environmental organizations. One of my early projects took me to Nepal, working in partnership with environmental education organizations to produce a wildlife conservation film. I now produce all sorts of films for the corporate market, including outdoor sports, education, agriculture, sustainability, heritage films and so on. At home, my wife Pip and I live on a smallholding in West Wales with our 2 children. We love the outdoors and make the most of this beautiful part of the world. Having said that, we also travel and this will be my fifth visit to Nepal. I have both filmed and trekked in this wonderful country. The last time I visited, we took our young family trekking in the Annapurnas. Over and above being a filmmaker and avid outdoors person, it is a great privilege to be part of this inspirational team and to help make a valuable contribution to help Gus and all boys with DMD to lead happy, normal lives.