Tomorrow a team of friends and I are running a 90 mile relay race from Enchanted Rock to Laguna Gloria. It’s a different kind of race … where the goal is for all of the teams to finish at the same time — at sunrise. When we end, there will be a gospel service thanking all the runners for raising money to help cure a deadly disease that only impacts children. The disease is called Batten Disease and while I don’t have a family member with the disease, I have seen one too many videos of families facing this terrible fate. See — a child appears happy and healthy until around age five when they start to go blind and then they start to have seizures and eventually it eats away at their neurological system. Children with Batten disease become bedridden and succumb to the disease by their late teens.
I can hardly think of a worse fate for a child. Imagine waking up one day and a disease you’ve never heard of completely changes the life you imagined for your family. I can only appreciate every day with Sabrina & Tyler and give thanks for their health and well-being. I am honored to provide support and funding to the fight to make a difference in the lives of all kids with Batten disease.
The Beyond Batten Disease Foundation has achieved significant breakthroughs regarding testing opportunities for future generations and has helped us get closer to a treatment through funding promising research at Texas Children’s Hospital. But more needs to be done and they need our support.
How can YOU help? I am asking you to give a donation and support me in the Run to the Sun. I’ve pledge to raise $1,000 to help fight this disease. Every dollar will make an impact, so please give what you can and today there is a 100% match from an angel donor! So, five dollars instantly becomes ten!! Please contribute here: http://runtothesunrelay.com/donate/?kwoAdvocateId=5W98527 (and it’s a tax deduction)
THANK YOU for joining me in the race to cure Batten disease!
