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June newsletter

By June 22, 2015November 27th, 2018Tracy's Blog

June 2015

In this Issue:

In the Clinic BREAKING NEWS: HT-100 Increases Strength
Upcoming Event  Cycle the Berkshires 
Event Debrief — Snoop Dogg on Stage with Charley
Kids’ Corner  Babysitting Night Brings in Cash
Merch of the Month  T-time!!

Dear Friends and Supporters,

Two more days ’til school lets out!! Charley is excited to sleep in, visit cousins, and spend a week with a friend at the beach. He’ll also have to head down to Baltimore in August for a clinical trial visit, but since good news has started rolling in about the data (see “In the Clinic”), the travel doesn’t feel quite so onerous. Preliminary data from the HT-100 trial shows that kids with Duchenne are responding to the treatment with increased strength! It’s extremely exciting to see the conclusions from this first set of clinical data. With your help, Charley’s Fund will continue to support the development of this promising therapy. On a personal note, our family is committed to seeing this trial through. Motivation abounds…while we are enticed by the promising evidence that’s emerging, Charley is lured by the Chipotle in the BWI airport!

Now that the sun is out, we’ve got a few ways for you to celebrate the beautiful weather and further fuel our successes. Sign up for next week’s Charley Ride, a gorgeous supported bike ride through the Berkshire Hills (see “Upcoming Event”). And we’ve slashed prices on our summer wear for kids and adults, so it’s even easier now to sport the smile (check out “Merch of the Month”). 

At middle school graduation tomorrow evening, Charley will stand at the podium to address the student body as Co-President of the Student Council. It’s an incredible departure from what we were told to expect when he was diagnosed with Duchenne. And it’s proof positive that anything is possible, so long as you make it happen.

Thank you for helping us “make it happen,” and happy launch of summer.

In the Clinic:
HT-100 Increases Strength

Today Akashi announced exciting news about anti-fibrotic treatment HT-100: Data is starting to come out of the clinical trial for Duchenne boys, and the first two cohorts in the study are experiencing an increase in muscle strength. This supports the hypothesis that the drug increases muscle strength and function by decreasing fibrosis (or scar tissue). The safety profile continues to look favorable as well. Meanwhile, ongoing experiments in mice keep turning up positive developments such as this recent study showing that HT-100 upregulates utrophin, a protein that may compensate for lack of dystrophin. Next up, six more trial participants will start on the medicine at a higher dose. We’re keeping close tabs on the progress and will keep you posted as news emerges.

Upcoming Event:
Saturday June 27th 

We don’t care if you’re a serious cyclist or just fooling around on two wheels for fun. Either way, we need you at this year’s Charley Ride! This is a supported ride, not a race. So the only competition is the fundraising, and you can help heat it up. Register here, and you’ll be walked through the simple steps of setting up a personal fundraising page. We’re 40% of the way toward our goal, and over half of the donations have been $25 or less. So your friends, family and colleagues can sponsor you and make a big difference for kids with Duchenne without breaking the bank. Call us at 413.528.0400 if you need any help at all. We’re here to help you help us!

We’re not quite sure how, but our friends at Matt’s Promise continue to outdo themselves each year. The 10th anniversary gala last month was by far the most incredible event yet. Nine hundred plus people packed the room. A silent auction kicked off the night, and competition was stiff for amazing jewelry and one-of-a-kind sports memorabilia. Guests heard a moving tribute to Matt from his wife Jen Wiederkehr Rothberg, and were reminded that nothing in life should ever be taken for granted. Attendees heard from two moms of kids with Duchenne, including co-founder Tracy Seckler, who shared their own experiences and stories from other families who are participating in clinical trials for new treatments. Hands were flying up all over the room during the live auction and then Snoop Dogg rocked the house. The amazing night resulted in $600,000 for Charley’s Fund and 28,000 likes on Instagram for this pic of Snoop and Charley! Click here to see a photo gallery from the event.

Kids’ Corner:
Babysitting Night Brings in Cash

Berkshire Country Day School 9th grader Charlie O’Neil
with one of his charges for “parents’ night out.”Last year, 15-year-old Charlie O’Neil got some cash for Christmas and decided to donate it to Charley’s Fund. Charlie’s mom explains: “Charlie’s grandfather gave each of the grandkids money for Christmas and suggested that they pay it forward to something that was meaningful to them. Charlie knew immediately what he wanted to support and started an in depth conversation with Grandpa Steve about Charley’s Fund.” And Charlie didn’t stop at engaging family members…a few months later, the passionate teen convinced his classmates to host a babysitting fundraiser. The 9th graders babysat the lower school kids, played games with them in the gym, served pizza and hosted a movie. “It’s the first date night my husband and I have had in months,” said Terri Sash who was thrilled to have a night off from the kids and support Charley’s Fund at the same time. Thank you Charlie “with an ie”, the BCD 9th grade, and faculty advisor Sue Benner. This is a fantastic fundraising idea and copycats are encouraged!

Merch of the Month:
T’s and Tanks 

SUMMER SALE ON TANKS AND T’s!! We’ve lowered the prices on our all our t-shirts and tank tops for kids and adults. These make perfect goodbye gifts for your kiddos bound for sleepaway camp! Traditionalists will love our classic pink and blue for girls and boys, but we’ve also got unexpected colors like navy, gray and turquoise for our edgier young supporters. Check out all the options here.


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