Archive for August, 2009

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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avi header

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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macawIt’s time again, for an inspirational poem.  Charley’s mother shared a poem that he composed which I subsequently shared on this blog.  I decided that I’d share other poetry on the blog as well.  I try to choose poems that I like, or that have moved me, in hopes that they’ll move you to action.  Action in donating.  Action in volunteering.  Action in doing whatever we can to help raise funds for research to find a therapy and ultimately a cure for Duchenne Muscular Dystrophy.

The poem below is titled “Dreams” and it was written by Langston Hughes.  He wrote many more famous poems and pieces of art and literature, but I find that “Dreams” is very appropriate for this blog.

Hold fast to dreams

For if dreams die

Life is a broken-winged bird

That cannot fly.

Hold fast to dreams

For when dreams go

Life is a barren field

Frozen with snow.

charleyThere are so many ways that we can help.  Buy the Live Inspired app for the iPhone.  Donate to Charley’s Fund or Darius Goes West.  Buy some merchandise from either of those two sites.  Together, our collective efforts are making a difference and there is a very real possibility that we will realize a dream and see an effective therapy for this generation of boys.  Please help.  The time is now.

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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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emily dickinsonOne of my favorite poets is Emily Dickinson.  Her unconventional approach to poetry and her thought provoking material has always forced me to read her works carefully, and to read them carefully multiple times.  Her words force reflection on many levels and the themes that she covers are deep and meaningful.  She uses such beautiful verse and imagery in her writing and I wanted to share one of my favorites on this blog because I think it’s appropriate in a number of ways.

As we attempt to raise funds for DMD research, hope plays a central role for us and especially for the patients and their families.  Hope for a good day, hope for slow progression, hope for a therapy and hope for a cure.  Even in our darkest times, hope springs eternal.  It has to. I hope that the Live Inspired application gives us pause at least once a day and forces a reflection that allows us to appreciate the good things and gain perspective on the bad.  I don’t do nearly enough of this type of reflection every day but when I read the quote of the day I at least have a brief period of it.  It’s one of the reasons we built the app and one of the reasons that I click the button every day.

I’m not qualified to interpret the poem, and it’s probably best to leave it up to each of us to interpret it for ourselves.  I have attempted to post it in it’s actual form, complete with dashes and punctuation and capitalizations.  I think it’s beautiful and uplifting, faith renewing and inspiring.  Enjoy.

bird in storm“Hope” is the thing with feathers —
That perches in the soul —
And sings the tune without the words —
And never stops — at all —

And sweetest — in the Gale — is heard —
And sore must be the storm —
That could abash the little Bird
That kept so many warm —

I’ve heard it in the chillest land —
And on the strangest Sea —
Yet, never, in Extremity,
It asked a crumb — of Me.

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cranwellCharley’s Fund is offering a unique way to contribute to the charity and get something for yourself in return.  On Friday, September 25, there is a Spa Day at Cranwell in Lenox, MA.  The event description from the Charley’s Fund website is below.

“The hectic weeks of back-to-school will be over, and before you know it, the holiday rush will begin.  Take the bold step of allowing yourself one day to relax and unwind.  Enjoy a massage or facial, try the challenging fitness classes, participate in an invigorating hike and chill with friends while benefitting Charley’s Fund.  Come for the day with a friend (or 2 or 3 or 4!), or make the trip the night before.  Cranwell has generously offered a reduced room rate of $129 for Thursday, Sept. 24.  Reserve your spot now, space limited to 100 women.”

charley and momFor details on the event or to purchase tickets, please follow this link.  If you’d like more information on the spa, please click on this link.  If you can’t support Charley’s Fund in this way, please donate what you can by visiting their site, purchasing some merchandise from their store, or buying the Live Inspired app on your iPhone or iPod Touch.  They are funding research that is vital and urgent and that will hopefully result in an effective therapy for DMD for the current generation of patients.  We can all make a difference if we work together.  The Spa Day at Cranwell gives you a chance to make a difference by relaxing together.

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play it forwardHopefully you’ve all had a chance to see Darius Goes West. Even more hopefully, you’ve seen it because you were able to purchase a DVD. For those of you who haven’t had a chance to see the vehicle, you can now view it for free on the Darius Goes West website. According to the site, the Darius Goes West Pay It Forward Challenge is this:

“We, the crew of Darius Goes West, bet you, the viewer, that upon a complete (and completely free!) viewing of the film, you will consider donating to the cause and sharing this film with your friends.We’ve provided all the tools you need to accept the challenge; all you have to do is watch the movie! ”

dariusI’ve embedded the DGW video at the end of this post. Either watch it from here or visit the DGW website to watch it. Once you watch it, please do a couple of things. First, donate what you can to the cause. Your donation goes directly to fund research that has the potential to help the current generation of boys with DMD. Second, use the Play It Forward sharing features to make your friends aware of the cause. Get them to watch, get them to donate. Together we can all make a difference. This is a great opportunity to see the film and contribute in a new way. Darius is an inspiring figure, and his crew has done an amazing job of riding the vehicle and building a presence, all with a singular goal: To fund research to find a cure for Duchenne Muscular Dystrophy.

Vodpod videos no longer available.

more about “Darius Goes West – Play It Forward“, posted with vodpod

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