Finding Strength to Keep Going

A heartbreaking farewell to Joshua, a young boy with DMD A few weeks ago, the Duchenne community received a painful blow. A young boy named Joshua, not quite 12 years old, passed away from heart failure. When our children are diagnosed, the doctors say that their projected life span is early to mid 20’s. Some men with… Read More »

We’re Going Back to Everest!

June 2017 Update It’s so hard to believe that it’s been almost two years since the first Everest to End Duchenne (ETED) trek in Nepal! So much has changed in our lives since then – some good, some not so good. The 2015 ETED was our highest grossing fundraiser ever, which is why we are doing… Read More »

Pacific Crest Trail Update

Steve was outfitted with a tracking device for the Whitney expedition, courtesy of tech guru Mark Gallagher. Mark was finally able to track the team last night and see where they were camping – on the Pacific Crest Trail. Ben Stein was able to gather some weather reports today for the area (see photos). Not… Read More »

August 22 Journal Entry

So, Steve has been hiking in the wilds of California since early Friday morning. I have not heard from him….no one has heard from the team. I’m sure they are fine…but I am anxious anyway. They are carrying very heavy packs, and I heard this afternoon that it has been storming there and that there… Read More »

Ain’t No Mountain High Enough…

Gus ‘graduated’ from 4th grade in June. It was a cute little ceremony and we couldn’t help but notice that his teacher’s voice broke a bit as she read his name. Just a few days earlier, I saw this year’s seniors graduate from Souhegan High School and step proudly into the tremendous potential of their… Read More »

What have I done that is really hard for me?

It was as simple as me thinking, “What have I done that is really hard for me?” It was very late one October night in 2014, I couldn’t sleep, and this idea kept running through my head, as I thought of how hard every day is for Gus. I sat at my computer, aimlessly searching… Read More »

Miracles

The team has safely come off the mountain; they’ve done something profound – and that profound thing is not that they successfully completed a challenging hike. The hike was always just the vehicle to achieve something much bigger. They wanted to face challenges that Duchenne patients face every day – they wanted to put themselves… Read More »

I had an interesting discussion with Gus today.

I had an interesting discussion with Gus today. “Hey Gus, Mom started climbing today…” “I know.” “You understand why she’s doing this, right?” “Yes, to get money to give to the scientists so they can make me better medicine.” “If you could get medicine to help you do anything, what would it be?” “Run…and climb… Read More »