We coordinated sending the pleural effusion fluid here locally to a Chordoma Foundation scientist named Patty. At the NC gathering, Patty mentioned they're making headway on the cell line.
I received an email from Patty last week: They were able to establish a formal cell line from Madison's disease, which will be sent to the CF's biobank repository in the coming weeks. This is significant. My understanding is there’s only one other cell line with some poorly diff characteristics, but it’s a blend of classic chordoma with some INI1 proteins (poorly diff is INI1 negative). While there are a dozen plus chordoma cell lines, I believe Madison’s may be the first poorly differentiated (aka pediatric) cell line established globally. There's another poorly diff cell line the queue to be validated, but in the coming weeks Madison's cell line will be available to vetted and funded researchers globally. More about chordoma sub-types here, and I love that picture of Madi! Back in 2013 when she was diagnosed, there was very limited data about how to treat her 1 in 20,000,000 subtype. Looking ahead, there's a clinic at NIH in April focused specifically on kids and young adults impacted by pediatric chordoma.
So our girl has cells that are now scientifically immortal in the form of a cell line... cells that keep dividing. In Patty's recent email to me, she closed with "Madison's beautiful personality has touched many, maybe now her cells will rock the research world".
Chordoma is a solvable problem, and Madison's scientific legacy can help save lives being a part of the solution. Reflecting back to Madison learning to 'use her words' as a toddler, this is very happy to my feelings.
Love and peace,