Rebecca and I are thrilled to be participating in the 2014 installment of the Muscular Dystrophy Association’s annual Lock-Up, which raises money to support MD research and help send kids affected by the disease to summer camp.
Below is a letter from a family in Central New York whose adorable little girl, Angelina, suffers from a rare muscular disease. Angelina’s mother, Erin, explains the need for funding much better than I ever could:
WOW!! I can’t thank you enough for saying yes to the MDA LOCK UP.
My name is Erin and I live in Liverpool NY with my husband Frank and our daughter, Angelina. Angelina was diagnosed with Spinal Muscular Atrophy (SMA) type 2 when she was 9 months old. Angelina never sat up independently, never crawled or walked and she will rely on a power wheelchair to get around. When she was diagnosed, we were told it would be unlikely that we would see her 2nd birthday. She is now a spunky 2 1/2 year old who is thriving. With all the things we have been told she couldn’t or wouldn’t do, SMA has never stopped her from having the determination to do things she sees other kids her age doing. As we get closer and closer to a treatment for SMA, we want to thank you for helping to create awareness for not only SMA but for all muscle diseases.
We have hope that someday soon, there will be a cure for SMA. And it is urgently imperative that we all raise funds for MDA research and find a viable treatment and cure for this awful disease. Without a symptom alleviating treatment or a cure for the disease entirely lives will be cut short. While SMA is extremely serious and very severe, it is the one of over 600 diseases the National Institutes of Health (NIH) has declared “CLOSEST to TREATMENT.” Researchers say a CURE is possible in a few years, IF given adequate funding. Thank you for helping to create hope for our family and for taking time out of your busy schedule to Make a Difference for so many Central NY Families.
Sincerely,
Erin, Frank and Angelina
Our Lock-Up takes place Thursday, June 12th. If you’d like to help further MDA research and support tough kids like Angelina, please consider donating at my personal Lock-Up page. This is a cause we love supporting and anything you can contribute is greatly appreciated.
Thanks from Face First!
