We have already more or less announced this to the SMARD community, but I of course need to do so here. We have something pretty major going on. One of the SMARD moms, Lisa, has been tirelessly searching for doctors who are researching or who are willing to research SMARD. They are few and far between, and as you can imagine, with little funding.
But she found someone. Dr. Greg Cox at the Jackson Lab in Maine has been researching SMARD. And he is a year away from identifying the rescue gene...the gene that could help our kids. We are going to begin fundraising for the lab to help push that research forward.
We are a year away from finding the key.
Let me put this into perspective. For too long we went with little hope for a cure for Dakin...unaware of researchers, not having a community of our own to form any kind of base to affect research. We fundraised in the hopes that in curing another disease, ours might be helped as well, but not with any real hope.
All that changed in the last year or so. We now have a small community...small but strong. We have smart parents working hard to help our kids. We actually have a chance now. This could actually happen. We could actually cure SMARD.
As all this was coming to our attention yesterday, I went to the gym. 'The Talk' was on one of the TVs, and I watched through closed captioning the story of a rabbi whose daughter had been diagnosed with a devastating disease. She said that one night she and her daughter were in bed studying a passage from Isaiah. The rabbi said something about how to her it meant we can find hope, and her daughter responded that the passage meant that hope would find you.
That is what has happened here. From the darkest night of abandoned hope, hope has found us.
I hope that you might help us make that hope brighter. When we begin fundraising, I hope that you will consider donating to the Jackson Lab through their non-profit arm, and help us make this hope a reality.