Isaac's Village Runs for LNS

Hi, I’m Melissa and I am a part of Isaac’s Village.  I’m asking you to join me in raising $2,620 in the month of September for Love Never Sinks!  A full marathon is 26.2 miles and if you can help me raise this amount (or more!) I will sign up for the Austin Marathon and take you along on the journey with me!

Who is Isaac?  You might have seen him in the now viral videos of La Murga singing him happy birthday at an Austin FC game.  You probably noticed his brilliant smile in those videos, which is super hard to miss.  Isaac was diagnosed with Lesch-Nyhan Syndrome when he was 4 years old.  It’s an extremely rare x linked recessive disorder that only impacts ten babies per year in the US.  Since it is so rare it’s often hard for families to get a diagnosis and the prognosis is not good.  But recently The Orphan Disease Center at UPenn has been researching gene replacement therapy and they want to trial it for LNS patients like Isaac.

What is Isaac’s Village?  We are a group of neighbors in Austin, TX who have become friends.  Except friends doesn’t really encompass what we are to each other.  We are a Village, stepping in to help wherever and whenever.  Now that there is hope for therapy for those that suffer with LNS we are helping Love Never Sinks, a registered nonprofit, to fundraiser in order to fund the clinical trials.