Shortly after our son Javier was diagnosed with Duchenne in 2007, we established Hope for Javier.
Hope for Javier’s mission is to create hope where none (yet) exists. Through fundraising and raising awareness, Hope for Javier is working to change the outcome for boys diagnosed with this devastating disease in two ways:
· By funding translational research – research that focuses on moving science from the lab into human clinical trials.
· By funding initiatives that make improvements to the standard of care, the quality of life and the general outlook for all those diagnosed.
About my family:
This diagnosis has affected not just Javier, not just us, his parents, but every member of our family and group of friends, all of whom work hard to make sure Javier enjoys his every day and remains happy and unaware of his illness.
Name(s) of child(ren)/individual(s) with Duchenne:
Hey Jen, I don't know if you remember me, we met (or rather our husbands met!) in Philly. I'm the super tall woman with fuzzy hair and cat eye glasses. I coveted your beautiful shoes. My better (?) half is Evonn. Anyhow, glad to see you on the site and I'll check out Hope for Javier.
In health and happiness,