Some of you may remember me blasting my social media feeds with relentless #WeNeedAMouse pleas earlier this year. Let me give you some context:
It sounds like an unusual request, but I quickly learned upon getting Parker's KIF1A diagnosis in January how important mice are to rare disease communities. One of the first steps to take when starting the long journey of discovering treatment for a rare disease is developing a mouse model. Why? Because scientists are able to manipulate mouse genes to replicate human diseases like KIF1A and conduct vital research. Many important medical breakthroughs start with mice. Hopefully that will be the case for KIF1A someday!
I am very happy to report that we not only got our mouse, we got FOUR mouse models from our generous friends at The Jackson Laboratory. I credit Luke Rosen, our champion KIF1A parent, for taking the bold initiative to connect with JAX to explore a mouse model for KIF1A. Thanks to his passionate dedication, JAX is taking care of these mouse models for us so we can apply the money we raised from the #WeNeedAMouse campaign to other medical research needs (like hiring researchers to actually study the mice).
For a “behind the scenes” look at how KIF1A.org partnered with JAX on our mouse model, please read a recent post from Luke here. In the post, Luke recalls the phone call with JAX when he learned they would provide the mice:
“[S]omebody said, and I will always remember this sentence, ‘What we're saying, Luke, is that we want to do this for the families, take the money you've raised and spend it on something else your organization needs.’ It was the first tangible goal our foundation met. I was crying, so I'm not sure if they even heard me say thank you.”
So, we owe a MILLION, TRILLION THANK YOUs to JAX and all of our supporters for believing we can and will cure KIF1A for Parker and all of his KIF1A buddies.