BENEFITING: CURE CMD
They say that the worst thing in life is for a parent to outlive their child. As much joy as our daughter Sophie brings to all of us, there isn’t a day that goes by that we and other parents of kids with CMD don’t think about that. But there’s not a chance in the world that we are going to let that happen without doing everything we can to prevent it. Unfortunately we can’t do it alone - we need your help. We cannot express in words how much we appreciate any support that you can give.
At the age of 2, Sophie was diagnosed with a rare genetic disorder called Ullrich, a form of Congenital Muscular Dystrophy, or CMD, which is a group of neuromuscular disorders that currently have no cure or treatment. Children with CMD are born with serious muscle weakness, and their muscles break down faster than they can repair or grow. Some children never walk. Some children, like Sophie, can walk early in life but lose that ability over time. Sophie lost the ability to walk when she was 4. Worse, the daily race of life becomes more exhausting and demanding as this progressive disease continues to weaken their already frail bodies.
But this can all change with breakthroughs in medical research. That’s why on October 5, 2014, we are running the San Jose Rock N’ Roll Half Marathon & 10K to raise money to find treatments for congenital muscular dystrophy, spread awareness about the disease and ultimately to hopefully save the lives of children affected by these diseases.
Sophie is an amazing little girl who just turned 8. She loves pop music (everything from Iggy Azalea to Ellie Golding), the Disney Channel (Ant Farm and Austin and Ally), dressing up and doing her nails, eating Japanese food and Krispy Kreme donuts, reading books like Wimpy Kid and the Land of Stories, complaining about her pesky little brother and hugging him and kissing him when she's not, and putting her hot pink wheelchair on high and gunning it as fast as possible. But although she never complains about her condition, you can tell sometimes by looking at her eyes that when she watches other kids, she wants to walk again, and run, jump in the bouncy house, swim in the pool, and dance to all her favorite songs.
So for one day, all these things that she cannot do, which we take for granted, we are going to do for her, in the hope that with your help, maybe one day Sophie, and all the other kids with CMD, will be able to walk and run on their own, if not for a half marathon, then maybe just far enough to chase that butterfly, or race that puppy.
All proceeds from the run will go to CureCMD, a 501(c)(3) non-profit organization that was founded just 6 years ago to raise awareness and fund research for CMD, and all amounts raised will go directly to fund research. Therefore if you are able, we would greatly appreciate your support through an online charitable donation. There is no minimum donation, and any amount you can provide will go a long way towards helping to find a cure for kids like Sophie. Your donation is 100% tax deductible. And please encourage a friend, relative, neighbor, or co-worker to support the organization by donating as well. If you’re on Facebook, LinkedIn or Twitter, please feel free to spread the word. Thank you for taking the time to listen and thank you all from the bottom of our hearts.