Posted in Uncategorized on May 29, 2009|
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I want to take the opportunity to introduce the blog to Darius Goes West. This organization is doing some very creative and worthy fund-raising efforts and providing generously to Charley’s Fund. We’ll most likely have multiple Darius-centric posts as we move forward, but I wanted to put the promo up for the Darius Goes West vehicle. If you haven’t seen it, I would highly recommend buying a copy. $17 of every $20 DVD goes straight to Charley’s Fund. I’m a very big fan of movies and going to the local cinema is something that my entire family enjoys doing together. I’m hardly a qualified critic, but I will give you my opinion of the film. It’s great. Better than great. If you’re looking for some inspiration and some fun, check out the website and the film. If you feel moved to help Darius and young people like him, download the app and buy the vehicle or make a donation. Their goal is to sell one million DVDs in one year. Please help. This is just one more way that we can all Live Inspired.
Here’s the clip..
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The widow of US Corp Charles Gaffney watches as her twin daughters Mia and Cara receive a flag during their father's funeral in Arlington, Virginia, after he was killed in Afghanistan by enemy fire.
I have never been able to think of the day as one of mourning; I have never quite been able to feel that half-masted flags were appropriate on Decoration Day. I have rather felt that the flag should be at the peak, because those whose dying we commemorate rejoiced in seeing it where their valor placed it. We honor them in a joyous, thankful, triumphant commemoration of what they did. ~Benjamin Harrison
Today is a day to remember those in the U.S. Armed Forces who gave the ultimate sacrifice. Memorial Day should inspire in all of us a deep sense of gratitude. Specifically, this holiday is meant to honor the war dead but it has extended to honor all of those who serve or have served. When a service member dies, the loss is felt most deeply by that person’s family. However, the loss is felt in a broader sense by all of us who benefit from that sacrifice. We are humbled and enormously grateful to all of those brave and unassuming service men and women who lost their lives in service to our country. We owe a debt of gratitude to the individuals and also to the families that they left behind. Politics aside and personal views on war aside, the fact that there are men and women who right now are willing to put put their own life on the line for all of us deserves more than just a blog post and a wreath on a grave. This is our way to humbly say thank you and to say that we recognize your sacrifice and realize that we owe you a debt that cannot be repaid. If we Live Inspired and lead a good life full of good works, we can at least attempt to make that sacrifice mean a little bit more.
For more on Memorial Day, here’s a link to the wikipedia page.
Link for the image above.
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As we go forward with our efforts to raise awareness and funds through the sales of the Live Inspired application, we’ll be sharing news items and stories that relate to Duchenne Muscular Dystrophy and how much of an impact the disease has on the family. To me, these stories more than many others, relate the sense of urgency behind raising funds to dedicate research towards finding a cure.
This story from King5 news in Seattle has some really touching quotes from Aidan’s family and also gives some direction on how to donate further. Aidan’s uncle set up a screening of “Darius Goes West” and from that, $17 of every $20 DVD sold goes directly to Charley’s Fund. Here is a quote from Mindy Leffler, Aidan’s mother, which I pulled from the King5 story.
“People want to heal and get better and move on,” said Leffler “But with Duchenne, you’re not allowed to because it’s every single day, and it’s a 20-year, 25-year-long tragedy.”
Here’s another quote from Mindly Leffler from the story.
“[Aidan has] probably a 5-year window where we’ll have an opportunity to take advantage of these therapies,” said Leffler. “After a certain point, his muscles will be in such bad shape that he can’t take advantage of what’s going on.”
These families and their children need help. Purchasing the Live Inspired app is a great way to contribute to their cause and also to help yourself on a daily basis. How many blog posts and quotes and inspiring stories do we need to hear before we commit to making a difference? Please help in any way that you can.
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We are very pleased to announce that the Live Inspired application for the iPhone and iPod Touch has been approved by Apple and is now available in the app store. Just open iTunes and search for liveinspired. At an introductory price of just 99¢ the app is a great value. Best of all, 10% of the purchase price will be donated directly to Charley’s Fund. It’s our way to support a great charity that is funding work to find a cure for Duchenne Muscular Dystrophy. This is a great start for us but we need your help to make this effort successful and to really make a difference for Charley and other boys with this disease.
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A May 11 press release outlines a study by the University of Rochester Medical Center states that “boys show signs of Duchenne Muscular Dystrophy (DMD) for 2 ½ years before they obtain a diagnosis and disease-specific treatment, about the same length of delay children have endured for the past 20 years despite advances in genetic testing and treatment.”
The test for DMD is inexpensive and more than 95% accurate, but it appears that many parents don’t recognize the symptoms as early indicators. URMC associate professor Emma Ciafaloni, M.D., is quoted as saying “We need to educate families to bring delays or abnormalities in motor skill – such as frequent falls, difficulty jumping, running or claiming stairs – to the attention of their health care providers as soon as they see them. And we need to educate pediatricians, family practitioners and all providers involved in the care of young children to recognize the early signs of DMD and to order a CK test if they see any motor delays or abnormalities. The sooner we start treatment, the more potential we have for delaying the disease’s progression.”
Dr. Ciafaloni was kind enough to provide a link to the abstract of the article on pubmed. I am looking forward to reading the publication and revisiting this issue.
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