Archive for the ‘The Socially Conscious Entrepreneur’ 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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On August 25th, AVI BioPharma issued a press release stating their planned presentation of the full set of data from a completed phase I clinical trial for drug candidate AVI-4658.  As I’ve written before, Charley’s Fund has provided key funding for AVI BioPharma research into finding a therapy via exon-skipping technology, specifically to treat Duchenne Muscular Dystrophy.

Here’s a quote from the release that sums up why so many people are excited about this technology and this type of progress.

“Data from the completed single-blind, placebo-controlled and dose escalationPhase 1 trial showed that AVI-4658 was safe when injected intramuscularly and successfully induced the production of dystrophin protein in patients in a dose-responsive manner. AVI also announced today that these data have been published online in the journal Lancet Neurology and will be featured in the October print edition. This safe and well-tolerated production of new dystrophin is believed to be the key to restoring muscle function and successfully treating patients with DMD – a condition for which there is no currently approved therapy.”

The full press release is available here.

To read the clinical trial abstract and summary, click on the Lancet logo.

To read the clinical trial abstract, click the Lancet logo.

darius and charleyThis is the type of research that Charley’s Fund supports.  This is the type of research that represents real progress.  This is the type of research that can help this generation of boys with DMD.  This is also they type of research that requires significant funding to bring these therapies out of trials and into the clinic.  We can all help by purchasing the Live Inspired app, donating to Charley’s Fund or Darius Goes West.  You can even buy stock in AVI BioPharma (Nasdaq: AVII).  Donate time.  Share the message.  Make sure that your friends and family understand the urgency with which we must approach this cause.  Please help.

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google alertsI signed up for a Google alert for “Duchenne Muscular Dystrophy” and I get links e-mailed to me every day with stories relating to the disease.  These stories range from press releases from companies doing ground-breaking research (like AVI BioPharma) to community interest pieces about fund raising efforts or a local family that is dealing with the disease.  Sometimes I get one that I feel that I have to share with on the blog.  I posted a little while ago about the 2009 Climb to Cure Duchenne.

gainesvilleThis most recent story from the Gainesville Sun (written by Lashonda Stinson Curry) relates to that post, but on a much more personal level.  I’ll share some of the quotes from the story here, but please take the time to read the entire thing.  The article is very well-written.  It’s incredibly poignant, touching and heartbreaking.  Once again, the quotes from the family convey the urgency with which we must approach funding research to find a therapy and a cure.  Bill and Kimberly Procko’s son, Evan, was born with DMD and Bill is training to climb Mt. Rainier as part of the 2009 Climb to Cure Duchenne.

One quote by Bill Procko:

bill and evan procko

Bill Procko, with his 5-year-old son Evan, climbs a mountain this summer while on vacation in New Foundland, Canada. Procko was training for the climb up Mount Rainier in a few weeks to raise money for Duchenne muscular dystrophy, which Evan was diagnosed with last March. (photo courtesy of Bill Procko from Gainesville.com)

“Birthdays are bittersweet because we don’t want another birthday to come. We want it to slow down. We want time, we don’t want to see him get one year older until this thing is taken care of.”

“In a whole new twisted way you’re told to raise your child. He’s going to be a happy, wonderful little kid. He’s going to learn all these things and he’s going to think he’s fine, but in 15 years prepare, because he’s going to be killed by a car.  Everything he is learning day by day he’s going to lose that ability — his legs, his arms, hands, every use of everything. So every proud little achievement he makes, it’s a twist in your gut.”

Evan’s mother, Kimberly Procko is quoted:

“Evan is moving all around now and having fun with his brother and you see this and you’re knowing that the progression that’s coming is so mind-bending. If you have a child and you know this child has a disability and that’s it, then you learn to work around it. But we can’t work around it because his disability has not fully been realized until he dies.  It’s just going to keep getting worse and worse and worse.”

charley's fund donationWe can all do something to help fund research to find an effective therapy for this disease.  Buy the Live Inspired application for the iPhone.  Donate to Charley’s Fund.  Donate to a  climber in the 2009 Climb to Cure Duchenne.  Every single dollar helps and collectively, we can make a difference for this generation of boys.  The time is now.  Please help.

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