Archive for June, 2009

Only Watch is a charity auction of unique luxury watches held every two years.  The event coincides with the Monaco Yacht Show.  The auction will be held on September 24 and prior to the auction the timepieces will be taken on a preview tour by the auctioneers.  This event is amcmrelevant to this blog because the auction’s proceeds directly support ongoing research for Duchenne Muscular Dystrophy (DMD).  All funds raised at auction will be contributed to the Monegasque Association Against Duchenne Muscular Dystrophy and support its related international research efforts focused on combating the degenerative genetic disorder.

In particular, I’d like to focus on the piece being donated by MB&F (Maximilian Büsser &mbf sage vaughn hm2Friends).  This particular piece was created in collaboration with artist Sage Vaughn and stands as his interpretation of their Horological Machine No. 2.  I find the story of the watchmaker and the artist inspiring.  MB&F refers to their timepieces as “horological machines” and after visiting their site and taking a peek at the engineering they certainly seem to deserve a higher title.

The same can be said of Sage Vaughn.  The butterfly and barbed wire theme is indicative of his artistic style and it’s pretty impressive to see his vision move effectively from canvas to chrome (or sapphire crystal in this case).  In 2007, the auction of 35 unique timepieces raised the exceptional sum of $3,878,946.

"Ruby Throats" Sage Vaughn 2007

"Ruby Throats" Sage Vaughn 2007

Obviously these are not watches that most of us can afford.  It’s just great to see an event on the other side of the world at a yacht show auctioning watches for hundreds of thousands of dollars that benefits the same cause.  Every bit helps and we can all do something.  We can download the Live Inspired app for 99¢.  We can buy a “Darius Goes West” DVD for $20.  We can buy a small gift from the Charley’s Fund online store or just make a donation.  If we can’t give money we can donate time or expertise or effort.


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NEW YORK, June 17, 2009 (GLOBE NEWSWIRE) — IWizard, LLC proudly announces the launch of Live Inspired(tm), the first ever socially conscious App available for iPhone and iTouch users!

Live Inspired(tm) is built on the fundamental belief that we help ourselves most by helping others first. The goal of Live Inspired(tm) is simple — to inspire iPhone and iTouch users to think differently and approach each day with a new appreciation for life.

For 365 days a year, the Live Inspired(tm) App delivers a magnificent inspirational quote and three spectacular photographs directly to your iPhone or iTouch. All of these quotes and photographs are sure to inspire each one of us to see the world just a little bit differently. Once we have begun to do so, Live Inspired’s creators hope that these new perspectives will help each of us make the world a kinder, gentler place.

In an effort to “walk the talk,” Live Inspired’s creators are challenging iPhone and iTouch users around the world to partner with IWizard, LLC in order to make the world a better place. IWizard, LLC proudly announces that 10% of the purchase price of each Live Inspired(tm) App sold is being donated to a select number of charities that work each day to better the lives of others.

IWizard LLC’s CEO, Michael Kratzer is proud to announce that the first charity selected to receive donations from the sale of the Live Inspired(tm) App is Charley’s Fund, a charity that has raised more than $13 million in just four years to support medical research dedicated to finding a cure for Duchenne Muscular Dystrophy — a disease that is 100% fatal. To meet Charley and to learn more about Charley’s Fund, go to www.charleysfund.org.

Best of all, this great new App is being offered for the introductory price of just $.99 until July 1, 2009 — after that the price will be $1.99. So what are you waiting for? Get inspired and help make a difference in Charley’s life today!

Live Inspired(tm) is one of many iPhone and iTouch Apps created by IWizard, LLC, a revolutionary App design and development company engaged in the conception and creation of iPhone and iTouch Apps including the first ever socially conscious App, games and other Apps.

          Michael Kratzer, Chief Executive Officer 
           and Artistic Director
          (561) 972-0874

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I just got a wall comment on facebook from Charley’s Fund (from Charley’s mother I’m sure) and I was inspired to share it with you on this blog.  This boy and his family are truly inspiring.  They are facing daily challenges that most of us can’t imagine but there is something that we can do to help.  Download the Live Inspired application from iTunes, donate to Charley’s Fund, buy a Darius Goes West DVD.  The science to help these kids is so close to being realized as an effective therapy.  We all have an opportunity to take part in something important and urgent.  Please help.

CF facebook


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Yesterday at 12:28pm

Charley wrote this poem…cover had pics of all the little things in life…some innocent cartoon character, ice cream cone, some a little more lascivious…beer (oops!), a $50 bill,

I think God is a boy
I know God speaks in every language
God is everywhere
in the sky
on the floor
in heaven and 
where you look
I think God is white, like clouds
I think God knows I am sick
I think God lives in the sky
God is holy

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I received a few links and some information from Charley’s Fund that I’d like to share.  The fund supports a broad array of research and some of that is outlined on the “Charley’s Fund” page of this blog.  This post will focus on AVI BioPharma and the work of this company towards finding an effective therapy for Duchenne Muscular Dystrophy.  AVI BioPharma holds the

Human chromosomes highlighted by fluorescent
Human chromosomes highlighted by fluorescent

predominant patent estate for exon skipping technology.  The relationship between Charley’s Fund and AVI BioPharma is an excellent example of how a not for profit can spur development at a for profit.  I really admire the way that Charley’s Fund approaches these types of contracts.  They are aggressively funding research into therapies that can make a difference in treating Duchenne Muscular Dystrophy in the very near future.  The work is urgent and important and I find it very inspiring.  We can all make a difference by downloading the Live Inspired application, donating money, spreading the word etc. 

Below is an excerpt from a press release issued on June 4 that demonstrates the commitment of both parties to bring this therapy from the lab to patients. 


AVI BioPharma Signs an Additional Drug Development Contract with Charley’s Fund Inc. for Duchenne Muscular Dystrophy

Fund has committed total of $5Million to AVI-5038

For Immediate Release

PORTLAND, Ore., and SOUTH EGREMONT, Mass. — June 4, 2009 — AVI BioPharma, Inc. (Nasdaq: AVII) and Charley’s Fund Inc. (CFI), a not for profit organization, today announced that AVI and CFI have amended their existing sponsored research agreement to provide for an additional $3 million in sponsored research funds, for a total of $5 million in support of the development of AVI-5038 through to IND. The drug candidate is based on proprietary PPMO chemistry and has the potential to skip exon 50 in certain patients with Duchenne muscular dystrophy (DMD). AVI’s first contract with the Fund was initiated in October 2007 and partly supported the research that identified AVI-5038.

“We are excited that the research supported by our Fund allowed AVI to identify this drug candidate for further development. We are pleased to extend additional support to AVI to help the company reach its clinical goals in this devastating disease so that more children with DMD can be treated” said Benjamin Seckler, M.D., president of Charley’s Fund Inc.

“Our new drug candidate — AVI-5038 — is based upon novel PPMO chemistry, which will potentially enhance the bioavailability and potency of exon-skipping drugs,” said Leslie Hudson, Ph.D., President and Chief Executive Officer of AVI BioPharma. “We appreciate the support and commitment of Charley’s Fund Inc. to help advance this promising drug candidate towards the clinic.”

AVI has selected and begun preclinical development on a lead molecule, based on AVI’s proprietary PPMO chemistry that has the potential to skip dystrophin exon 50 and so not only restore the proper RNA reading frame but also produce functional dystrophin in patients with certain types of mutation. This therapeutic approach is similar to that of AVI-4658, which AVI has in more advanced development to potentially treat DMD patients with mutations that could benefit from skipping exon 51 of the dystrophin gene.

 Below is an excerpt from AVI’s about us page.

Company Overview

AVI BioPharma is a biopharmaceutical Company specializing in the discovery and development of novel, RNA–based drugs targeting a wide range of important diseases.

A pioneer in the fast growing field of RNA therapeutics, AVI has developed and optimized derivatives of its proprietary antisense chemistry (phosphorodiamidate morpholino oligomers or PMOs) that can be designed to target the diseases through several distinct mechanisms of action.


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One of the questions that we get more often than we were anticipating is “what good is one dime going to do?”  This query is made in reference to our commitment to give 10% of the purchase price of 99¢ to Charley’s Fund.  My typical answer is essentially a reference to the March of Dimes.  

march of dimes

This organization was founded in 1938 by Franklin D. Roosevelt as the National Foundation for Infantile Paralysis to fund polio research and provide care for those with the disease.  The initial fundraising effort started with an appeal over the radio for everyone to give a dime to the fight against polio.  In 1945, FDR died in office and one of the ways in which he was dimecommemorated was by putting his portrait on the U.S. dime.  In 1955, a vaccine developed by Jonas Salk proved safe and effective and the disease has been largely eradicated as a result.  The March of Dimes was not the only organization funding research.  There were many public and private donations that contributed to funding the research and trials that were necessary to develop a vaccine, but the initial push and the bulk of Dr. Salk’s work was funded by the March of Dimes.  Once the fight against polio had progressed to the point of successful vaccine development, the March of Dimes changed its mission and now states that “We’re dedicated to improving the health of babies by preventing birth defects, premature birth and infant mortality.”  

This is a great example of the difference a dime can make.  Given, it will take a large collection of dimes to develop a therapy and cure for Duchenne Muscular Dystrophy.  So much has been done already and there is a growing consensus that researchers are on the brink of providing an effective therapy for this disease in the very near future.  But we need your help.  Download the Live Inspired app and know that your dime really can make a difference.


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do something

I’m going to front and center a couple of comments that I received in response to the Darius Goes West post.  Darius is in the running for a $100,000 award from dosomething.org and we are asking for as much help as you can give to make sure he wins.  He is going to donate the entire amount to Charley’s Fund if he wins!  The comments give some information on how to vote and Darius Goes West has even put together a tutorial for those of us that need some help with the voting process.

Hi, my name is Sam Johnson, and I’m from Darius Goes West.
Thanks so much for the kind write-up!

One easy yet extremely helpful way to help out the cause right now is by voting for Darius to win the Do Something Awards. He’s one of five finalists (out of thousands!) up for the grand prize. His winning would send $100k straight to Charley’s Fund and Duchenne Muscular Dystrophy research! It would also raise an unprecedented amount of awareness. You can vote daily until June 4th, no sign up or anything!

And we can’t thank “Live Inspired” enough for the blog post! We rely entirely on word-of-mouth to let folks know about our cause. Thanks for understanding that and helping us out!!

Here is a link on how to vote:

Darius Weems is being considered for the $100,000 Do Something Awards grand prize. If he wins, he will donate ALL OF THE MONEY to Charley’s Fund and Duchenne muscular dystrophy research.

The winner will be decided by vote.

You can vote once a day, every day, between now and June 4th. We’d be honored to have your vote – and hope that you’ll ask your family, friends, and colleagues to vote, too.

To vote, simply:

Visit this page: http://www.dosomething.org/youtube

Click “Vote Now”

***Important*** Click “Next Video” until Darius’ Video appears

Click the “thumbs up” sign beside the video (thumb turns green when vote is cast)

If you are having trouble figuring out how to vote, visit the following link on the “Darius Goes West” site, which provides screen shots, and the exact steps for voting.http://www.dariusgoeswest.org/how-to-vote-for-darius-to-win-100k/

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