My son, Justin Paul Monastesse, was a gift and he lived with Duchenne for more than 25 years. Justin always had a great time even though it took 2 1/2 hours to get him up and ready because of the ventilator and feeding tube. He was off to teach computer classes at his old high school during the day and concerts or movies at night. Justin loved to tell jokes and never ever complained about his physical limits.
Justin was on this earth for a shorter ‘vacation’ than others but he taught people by the way he lived. He had a shorter journey but lived with purpose. Duchenne put a limitation on Justin’s body but not his soul.
Based on current scientific knowledge, Duchenne could be treatable for this generation of boys. The limiting factor of treating these children right now is funding…not the science. That is why we support CureDuchenne. Their only mission is to fund research to find a cure for Duchenne.
CureDuchenne is currently funding a research project with Lexicon Pharmaceuticals that shows potential to initiate muscle regeneration in Duchenne. CureDuchenne’s goal is to raise $150,000 by the end of the year to move the Lexicon project forward to human clinical trials. This drug is not exon specific so it could potentially treat all boys with Duchenne.
It is too late for my son but it is not too late for other boys with Duchenne. With your support, we can ensure that the most promising research projects move forward for this generation of those impacted with Duchenne.Will you help us CureDuchenne now? Go to www.CureDuchenne.org/YearEnd2013. Your generosity could help save boys lives.
With gratitude beyond words,