$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 company, was developing a drug called enzastaurin, that was showing substantial beneficial effects for patients with vEDS.  However, the company was developing the drug or another disease and it wasn't showing the benefits for that unrelated disease. So, they canceled the program.  If they have a benefactor who can spot them $22M, they would restart it or sell it to another firm to pursue. That's why I'm trying to raise awareness and funding.  

If you'd like to help, or if you'd like to join my team in helping, then please go to https://give.marfan.org/teamsaved   

Here's the kicker.  As I meet more people who've been affected by vEDS, and I read stories, there's a common theme that is delivered in the prognoses.  People have been told - "We don't know about that, here's a google link that might explain more." or "None of us know how long we've got - live, laugh, love."  I know the people who delivered those messages meant well, but at the same time, it's as if they're saying "It sucks to be you."

I'm thankful we met Dr. Liang and team. They're not in the sucks-to-be-you camp.  Help me help them. Share this message with everyone you know,   Maybe we'll find a benefactor who'd like to help improve lives instead of create rockets.  

Thank you for reading and if you need infomation, hit me up.



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