ONE TOUGH MOTHER

INTO THE WIND ON EVEREST

BY CHRISTINE PIACENTINO

One of the most interesting and inspiring people I know is Tonya Dreher. I’m so thrilled to introduce the Rochester Woman Online Community to this empowering woman! Tonya lives in NH with her husband Steve and three children, Isabel, Abe, and Gus. She is the founder of Everest to End Duchenne (https://everesttoendduchenne.org/) and the Hope for Gus Foundation (https:// hopeforgus.org/).

foundation Hope for Gus?

Our son Gus was diagnosed with DMD at age four, and we quickly realized that there was no effective treatment or cure. As a parent, that is such a horrible and helpless feeling – we felt like we had to do something. I’m not sure I’d be able to get out of bed every day if I wasn’t actively doing SOMETHING to help improve Gus’ life and the lives of everyone who lives with DMD. company, Hope Treks Nepal (https:// hopetrekking.com/). My lead guide Adhish Rai is my 2nd family. I asked friends in the States for donations to raise money for the Shree Chheskam Secondary and Primary Schools in Adhish’s hometown of Chheskam. Hope Treks pays its guides well, continues to support the schools in Chheskam, and, most importantly, it cycles its profits back into medical research and cares for kids with Duchenne through Hope for Gus Foundation.

I grew up in NH, hiking, backpacking, and camping through the White Mountains of NH. I thought those expeditions were challenging. Traveling to Nepal and hiking to Mount Everest Base Camp was never a wish on my bucket list; it might be yours. If it is, you are not alone. Approximately 40,000 people a year make the trek and Tonya might be able to help you have a truly inspiring experience.

Tonya is taking my son Jonathan to Mount Everest Base Camp symbolically. Tonya has led the Trek to Mount Everest Base camp four times since 2014. On her trek to Mount Everest Base Camp, she carries prayer flags and a flag with the names of Duchenne Muscular Dystrophy (DMD) patients living and who have passed away as a tribute to all patients from around the world. This year the flag has over 800 names on it.

I had a chance to talk with Tonya before she left for Nepal.

When most people start a Non-Profit, it becomes overwhelming, and they give

up. What is your driver to continue?

At first, it was my son, Gus. After over ten years of getting to know so many families and friends in the DMD community, we are stronger together. I have built a community with the Duchenne Families in Nepal. Each year, some of the proceeds from the trek go to support Nirmal Khadka’s amazing Muscular Dystrophy Organization of Nepal and his home for kids with Duchenne. As a result of my love for Nepal and my passion for trekking, I started a for-profit trekking

What is the “Hope For Gus” organization’s most outstanding achievement to date?

Everest to End Duchenne, for sure. We created this fundraiser from the ground up. We were the first DMD organization to go to Everest for the cause, and we have even trademarked the name. People love this event because it is 100% about the boys (and some girls) who have DMD. We bring them and their families with us, and they can feel our love and support – it is such

an honor.

What are your greatest strengths or superpowers?

I think I have a lot of perseverance (some might call it stubborn). I don’t know why I felt I could trek 80 miles to the base camp of the highest mountain in the world because I am not even close to being an athlete. But I did it, and I’ll do it again for Gus and everyone who lives with Duchenne.

“I think I have a lot of perseverance (some might call it stubborn). I don’t know why I felt I could trek 80 miles to the base camp of the highest mountain in the world because I am not even close to being an athlete.”

Climbing the Himalayan Mountains in Nepal to Mt Everest Base Camp is on many people’s bucket lists. How did the Everest to End Duchenne Trek begin?

I ran our foundation for about six years, and I couldn’t shake the feeling that we weren’t doing enough. I also felt a bit burnt out on the same old fundraisers. I had this feeling that I wanted to do something bigger. After a while, the idea of walking or climbing a mountain for those who cannot do it themselves felt symbolic, and while we could have just chosen a mountain here in NH, the phrase “Everest to End Duchenne” stuck in my head.

The next thing I knew, I was googling trekking to Everest Base Camp and shouting out that I was going to Everest on social media. That first year seven others joined me.

What made you believe that you could turn this trek into a successful fundraiser for your non-profit?

I wasn’t sure that the fundraiser would be successful, but as soon as we announced the flag that we were taking with the names, everyone in the DMD community was so excited and supportive. They absolutely loved the idea of us taking their boys to Everest with us in spirit.

Describe how it feels when you make it to Base Camp, and you begin calling out the Duchenne names on the flag to the wind?

It is such an honor. It is usually a solemn event – it’s incredibly emotional when we finally get there and have the flag with hundreds of names. Our fantastic Nepali guides carry a thermos of tea for the ceremony and place white Khata scarfs

around our necks before we begin. These scarfs symbolize respect and good wishes.

The team takes turns reading every name, and we offer up a prayer to protect those living with DMD and remember those who have passed away.

every two years?

Everett to End Duchenne was supposed to be a one-time fundraiser. But the first trek in 2015 was so successful, and people asked me if I would go again, wanting to join and support the expedition. Our sponsors have been fantastic – Parent Project Muscular Dystrophy, Sarepta Therapeutics, Full Circle International, and JB’s Keys to DMD have supported and partnered with us every year. As long as people are willing to take this journey with me to raise money and awareness, I will keep going.

Do you have any advice for anyone who wants to join this trek to Mt. Everest?

Anyone is welcome to join Everest to End Duchenne if they are willing to raise money and awareness for Duchene Muscular Dystrophy (DMD) and the cause or research that we choose to support. If I can do it, ANYONE can do it. It is never about us, the trekkers – the spotlight should always be on the disease and the families who live with Duchenne.