A Message to Elon Musk @elonmusk and DOGE from a Mother of a boy named Max.
Please at least give it a read and reconsider haphazardly freezing funding on important government programs:
"Elon, this perfect little boy is my son Max. He's not a parasite. He's pure joy. Love radiates from him, and he has a smile for everyone he meets. He was born with a rare genetic form of leukodystrophy called TBCD that is usually fatal by five years of age.
We were filled with hope when the researcher our patient advocacy group has been working with at Nationwide Children's Hospital was awarded with an R01 grant from the NIH after our community pooled our resources to fund the first phase of her research to apply for it. Last year, she showed us some of her work in the lab that PROVED there was a pathway to a treatment.
It was just a few cells in a dish. My son's neural cells -- cured.
Right now, her funds are frozen. The grant that was providing hope for a future for these children with a condition so rare that private pharma would never have any interest in creating a treatment is what you're fighting to slash funding for. You might as well be slashing my kid's throat.
Any delay in bringing this from the bench to the bedside WILL kill children in our community - and you're laughing on X and calling them parasites?
Shame on you."