Archive for the ‘Current Events’ Category

galapagosThere was a press release yesterday from Galapagos NV detailing a new clinical trial for one of their existing drug candidates.  It came as no surprise that Charley’s Fund is helping to fund the trial, along with the Nash Avery Foundation.  This is what Charley’s Fund focuses on.  If money from donors is the fuel and research is the engine, Charley’s Fund is the filling station, pooling money from donors that is then used to drive these research engines with the ultimate goal of finding an effective therapy and cure for Duchenne Muscular Dystrophy.

nash averyTheir drive and passion is truly inspirational.  Their combination of grace and determination and tireless commitment to their cause has resulted in real progress towards the singular goal.  It is an exciting time and there has been cf logosome incredible progress made, but there is more to do.  We can all help.  Please donate to Charley’s Fund or the Nash Avery Foundation.  Buy the Live Inspired app.  Purchase a Darius Goes West DVD.  Our collective donations will fund research that will result in a therapy for DMD for this generation of boys. Below are some quotes from the press release.  The full release is available here.

“Charley’s Fund and the Nash Avery Foundation will support the costs of pre-clinical studies to assess the potential effectiveness of G100192 in treating Duchenne muscular dystrophy.”

“The SARM therapeutic that Galapagos is developing for cachexia could be of potential benefit in treating Duchenne muscular dystrophy,” said Benjamin Seckler, M.D., President of Charley’s Fund.  “If the pre-clinical models show efficacy in treating this disease, G100192 could become one of the first small molecule candidate drugs for Duchenne – complementing the gene therapy and biologic approaches in development.”


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Charley’s Fund has some really great opportunities to donate to their cause.  You can donate money directly to the cause, you can buy some Charley’s Fund merchandise, you can support Darius Goes West, you can buy the Live Inspired app for the iPhone.  In addition to all of that, there are fund-raising events that you can attend.  I’ve posted the information below, but it’s also available on the Charley’s Fund website.  If you can help in any way, please do.  This charity does an amazing job funding cutting edge research that has the potential to deliver an effective therapy for this generation of boys with Duchenne Muscular Dystrophy.  We are closer than ever to this goal, but there is still a lot of work to be done.  That work can only be accomplished with adequate funding, and a large part of that funding comes from people like you and me.  We can all make a difference by working collectively towards a goal.  Please help.

Women’s Spa Day in the Berkshires
Friday, September 25, 2009
Cranwell Resort & Spa, Lenox, MA
This special day will include a spa treatment of your choice, lunch, lectures, fitness classes and all-spa access while benefitting    Charley’s Fund.  Come for the day with a friend (or 2 or 3 or 4).  If you prefer to stay over on either Thursday or  Friday  night, Cranwell has generously offered a reduced room rate of $129.
Click Here to learn more and Purchase Tickets
4th Annual Louis J. Capano, Jr. & III Family Foundation Golf Outing
Monday, September 21, 2009
Dupont Country Club, Wilmington, DE
All proceeds from this golf outing will benefit Charley’s Fund.
Please call Alex Walsh at 302.429.8700 to learn more and purchase tickets.
Darius Goes West Television Premiere

Sunday, September, 27, 2009 at 12 noon
In honor of Darius’ birthday, a special one-hour version of Darius Goes West will air on MTV2. Tune in and tell all your friends!
Old Harrison Rye Flag Football Charity Game
Sunday, October 11, 2009
Harrison Avenue Football Field
A reunion football game sponsored by Benjy’s good friends from his hometown of Harrison, NY to raise money for Charley’s Fund.”
For more information, please visithuskieshelpcharleysfund.com.
Live and Let’s Give
Friday, November 6 – Sunday, November 8, 2009
Lichtenestein Center for the Arts, Pittsfield, MA link:www.culturalpittsfield.com
A group of exceptional artists from the Berkshires and beyond will gather at the Lichtenstein Center for the Arts to create a beautiful and eclectic shopping experience for the community. A portion of the proceeds from the sale, and all of the opening night ticket sales will be donated to Charley’s Fund. This event has been generously organized by Michele O’Hana.
More information and invitation to follow.

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summit photoI’ve posted a couple of items about the 2009 Climb to Cure Duchenne.  The team summited Mt. Rainier on 9-1 and to date have raised over $130,000 for Cure Duchenne.  This was an amazing effort by all of the people involved, from the climbers to the supports staff to the individuals and companies that donated time and money.  It is inspiring to see such a broad range of people get motivated and get involved to raise funds for such a worthy cause.  My hat is off to all of you.

Here are some follow up articles to the 2009 Climb to Cure Duchenne.  The quotes from parents, participants and others are touching and inspiring.

bellevue reporter

daily piolot

news tribune

If you would like to contribute further to the cause, please click on the logo below.  There is an urgent need for funding research and this is a great way to help.  I’m inspired by these efforts and I hope that you are, too.  Please help.

cure duchenne

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examiner logoI was alerted to this video by the Examiner Miami.  It’s a really informative video that explains Duchenne Muscular Dystrophy.  It was put together by BrainPOP, and although it’s intended for kids I think adults will benefit from watching it as well.  It covers the basics of the disease in an elementary way, but sometimesbrainpopthat’s what’s needed.  If you’re not familiar with BrainPOP I will take thisopportunity to recommend them.  If you have kids and want to introduce them to scientific concepts and ideas, BrainPOP is a great way to do it.  A free trial is available and the full site is available by subscription.

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xconomyThis interview with Dr. Jeff Chamberlain on xconomy.com is a really informative read.  He is a neuroscientist at the University of Washington in Seattle and has been doing research related to muscular dystrophy for over 20 years.

Jeff Chamberlain, Ph.D.  McCaw Chair in Muscular Dystrophy Professor, Depts. of Neurology, Medicine and Biochemistry

Jeff Chamberlain, Ph.D. McCaw Chair in Muscular Dystrophy Professor, Depts. of Neurology, Medicine and Biochemistry

The interview covers a lot of ground, but it really lays out how much progress has been made and how much work there is left to do.  He answers questions about the various therapies currently in trial, as well as the possible long term impact of the therapeutic approaches.  It’s a fairly long interview, but I found it inspiring and extremely informative.  These kids need our help, and one of the best ways that we can help is by donating to organizations like Charley’s Fund and Darius Goes West.  Downloading the Live Inspired app for the iPhone gives you a daily reflection and inspiring image and also donates money to a charity working specifically to fund research at labs that are working on these revolutionary therapies.  Please help.

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newschannel 3Here’s yet another story about an inspirational young man with Duchenne Muscular Dystrophy.  Alex Clements is the 2009 Muscular Dystrophy Association ambassador for the state of Michigan.  He travels all over the state speaking at fund raisers and educating people on DMD and what it’s like for a 10-year-old to have the disease.  The clip is from CBS News Channel 3.  Alex’s story, just like all of the other stories, demonstrates the urgency with which we must approach raising funds to find a cure for this disease.  If you can donate money to Charley’s Fund or Darius Goes West, please do so.  If you have an iPhone or iPod Touch, purchase the Live Inspired app.  There is so much good that can come from our collective efforts.  Please help.

Vodpod videos no longer available.

more about “Alex Clements“, posted with vodpod

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Phil’s Plan

I was directed to this YouTube video after hearing a story about it.  This documentary was produced by Mark Curcio, Stuart Lasky and Phil Cantore while they were seniors at DePaul University.  It tells the story of Phil’s last year of life prior to his passing at the age of 21.  Mark and Stuart were interviewed by ABC 7 in Chicago about the project and what they have learned from it thus far.  Phil’s parents were also interviewed for the story.

This is just one more example of why funding research is so vital.  Phil wasn’t able to benefit from the latest DMD research, but there are thousands of others who can.  It’s up to us to help.  Here’s a quote from his mother.  The video is embedded below.

“He graduated with honors, and I’m proud to say that he was two semesters short, and he did walk.  In fact, his father and I went up on stage and I was crying.”

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