As our readers know, we have always tried to use this blog to help educate and shine a light on the issues of the day. This post is personal for me however. It involves the tragic condition of a very special little boy that I have had the good fortune of knowing. Following below is the message from my law partner and best friend who has been working tirelessly to find a cure for Duchenne Muscular Dystrophy (DMD) on behalf of an incredibly brave 8 year old little boy, Alexander Llauro. If you have just a few minutes, please watch this video and consider helping us find a cure for this horrific disease that afflicts young boys.watch full film Sisters online
I would like to introduce you to my friend Jorge and his son. Jorge’s son, Alexander, is 8 years old and has a very rare medical condition that only afflicts boys, called Duchenne Muscular Dystrophy (DMD). It is very different and much more debilitating than the Muscular Dystrophies you have heard of before. I have attached a .pdf for the “Walking Strong” Foundation, and a video that explains all of the medical aspects of Duchenne Muscular Dystrophy and the research that needs to be funded to stop the progression of the disease. I hate asking people for anything, but this is not for me, it is for Jorge and Alexander. Alexander only has about 2 years left before he loses the ability to walk and is bound to a wheelchair for the rest of his life, however long that is. If we can raise 1.88 million dollars for this promising new drug therapy being developed in Ohio, and get FDA approval for human trials quickly, Alex can get into the trial before he loses the ability to walk. There is no cure, and they cannot reverse the damage done. So once he loses the ability to walk, that’s it. That’s why time is so critical. It will take about a year to get FDA approval for the trial, once the money is raised. If it takes too long to raise the money, thus extending the FDA approval, it will be too late for Alex. By the way, this is not just about Alex. There are tens of thousands of boys afflicted with DMD in the world who can be saved and helped. It’s just that Alex is my (our) mission. Just imagine if it was one of ours, the extent to which we would go to do everything humanly possible.
First, the Walking Strong Foundation is having a fundraising event this May 23, 2015. At the bottom of the email I have attached a copy of the flyer and I would love for you to attend. There is no fee. Second, I have 10 days to raise as much money as possible. What I would love more than anything in this world is to take that stage at the event and present checks made payable to the “Walking Strong” Foundation in amounts so astounding that we all breakdown crying, and we all have hope that we saved him. Whatever you can do to help me with that I would appreciate so so much. Third, the foundation desperately needs to raise awareness. DMD is what they call an “orphan disease.” That means it does not afflict enough people to be known, or to prompt the drug companies to develop cures. Everyone knows about Lou Gehrigs Disease and breast cancer, but no one has heard of DMD. Please think of anything you can do to raise awareness and let people know how many little boys are crippled and killed by DMD. Please help us to get the attention of the FDA to fast track human trials for new drugs so we can stop the progression of the disease before the boys can no longer walk. Maybe you know a celebrity, or someone with a high profile that can raise awareness? Do you know anyone who would be willing to be the face of the campaign? Maybe do a 30 second PSA? I really need your help.
Thank you for taking the time to read this email, watching the attached video, and for whatever contribution you can make. Please make any check payable to the “Walking Strong” Foundation and send it to my attention at this office (23035 Ventura Blvd., Woodland Hills, CA 91364) or call me at 818.999.1950 if you have any questions.
- You can also donate through Walking Strong’s website by clicking here.
Walking Strong: Foundation Overview