Showing posts from March, 2024

$22 Million

For those who thought this is a about politics, it's not.   $22 million is the amount it would take to bring a life-saving drug to market.  Unfortunately, the company that was developing the drug, has decided that it's not profitable enough to continue development.  Here's the backstory.  On Wednesday of last week, the Lad and I met with the head of the Cardiovascular Connective Tissue Group at Stanford Medical Center, Dr. David Liang.  He, along with Mitchel Pariani and Jehan Shaukat spent several hours with Rob and me giving us the lowdown about many Vascular Ehlers-Danlos Syndrome (vEDS) history and prognosis.  They were amazing in their compassion and their knowledge.  It was encouraging. My objective for being there was to learn as much as I can and to find out where I can help. In particular, what's being done with research and how can I help.  They told me, "Well if you know someone who is famous who has vEDS, that would help." Aytu, a bio-medical compa

"There, but for the grace of God, go I."

Hey all,  It's been a few weeks since my last update. I'm even more serious about raising awareness and raising funds to support Vascular Ehlers-Danlos Syndrome (VEDS) research and patient care. Next Wednesday, the Lad and I will be going to Stanford to meet the folks in the Cardiovascular Connective Tissue Disorders program. Rob will be introduced to their program and staff, I'm going to find out how I can help. Just a reminder, if you'd like to help - the link is here -  Team Strength Against VEDs Here's the problem with rare diseases and disorder, there's no money in it so there's not the research engines that exist to put more energy into finding treatments or even cures. Personally, I think the discoveries and advances in CRISPR may offer hope. BTW, one of the leading researchers in this area is Nobel Laureate Jennifer Doudna who is on the faculty at UC Berkeley. Go Bears! My point is that there's not enough awareness and there's not enough rese