BENEFITING: DUP 15Q ALLIANCE
ORGANIZER: Sarah and Mike
EVENT: The Mighty Run
EVENT DATE: Nov 21, 2015
Sarah and Mike Porath wrote -
We're at it again and we're asking for your help. This Saturday, Nov. 21, we are running up and down the mountain trails on Catalina Island to raise funds for Dup15q Alliance, the non-profit organization that supports people with Dup15q syndrome like our 9-year-old daughter Annabel.
Mike is running the full marathon, Sarah is doing the 10k event and 6-year-old Isaac may attempt the kids' fun run. Henry, our 3-year-old, says he will sit in the shade and have snacks. We've got some friends and The Mighty team running with us this year as well.
Many of you have donated to these runs over the years — this is our fourth — and the impact you've had is pretty astonishing. You helped Dup15q Alliance establish a genetic registry that generated far more interest in the syndrome from researchers. You helped us establish a network of clinics around the country to better care for the special needs of our kids. You helped us fund studies that are narrowing down which duplicated genes are responsible for the challenges our kids face — autism, seizures, cognitive delays, anxiety and sensory disorders among them. Once we've found these genes, treatment becomes a real possibility. And this year I'm proud to say our group was able to offer its first fellowship grants to young scientists who are starting their careers by studying Annabel's disorder.
When you donate to the Alliance, you are part of an amazing story that is still in its early chapters. We are just 1100 families worldwide. And yet more than 400 people from those families came together for our conference this summer in Orlando. It's a truly special community oozing with unconditional love.
Please consider making a donation and becoming part of this story. Your support means the world to us and it's going to mean a brighter world for Annabel one day too.
Sarah and Mike