Duchenne Israel held its first conference on Tuesday evening. Professor Yoram Nevo, the leading pediatric neurologist and CINRG director opened the meeting with a discussion about his efforts to combine Losartin and Copaxone as a potential substitute for steroids. He has data on each compound and will now test the combination in the mdx mouse. 60+ family members, doctors, researchers, and healthcare professionals attended the meeting. The room was filled – over 60 family members, doctors, researchers and healthcare professionals gathered together for this meeting. The room was filled with excitement, with community, with hope. This is my first trip to Israel and as I stood on that podium, I saw the diversity in the room –different cultures, different belief systems – united in the universal language called Duchenne muscular dystrophy. It was exactly right. We should be together, working side by side.
This afternoon my wonderful hosts took me to the Wailing Wall and to the tunnels, the excavation site to expose the entire Western Wall. Our tour guide provided the historical prospective. We looked back in order to look forward. As we climbed down into the tunnels, the guide explained we were in the central part of the Western Wall, the place thought to be nearest to the Holy of Holy places. We stopped there in prayer, wrote names of the young men we lost this year and placed the notes into the wall.
We walked down the Via Dolorosa, the path Jesus carried His cross. We touched the stone where his body was placed after He died. We again prayed for all of our sons and daughters. We prayed for all of us. Israel. Faith. Hope.
Today is the last day to vote
for PPMD in the Chase Community Giving challenge on Facebook. I have voted for Duchenne, for my own sons and for yours. We may not win the $1 million grand prize, but we must vote
so that the Facebook universe understands how important our fight is. And so that our children understand how precious we think they are. This contest was never about a big cash prize (sure that would be great, we'll never turn down $1 million!) - it's about awareness.
I'm on the other side of the world from most of you and the faces of Duchenne are just as beautiful here as they are back in the States. Your vote for PPMD
and Darius Goes West
(another Duchenne specific organization that shares our mission to end Duchenne) is not just for your son or your friend's son, but for the young people all around this world living with Duchenne.