Showing posts from 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

Some Background about VEDS

Last week I wrote about my son being diagnosed with vascular Ehlers-Danlos syndrome.  I am raising money for the organization that is driving research for this disorder.   Please read about it here. Thank you to those who have donated and supported my cause. Today I want to provide some clarification and education.  I'm hoping you'll get a sense for how serious this disorder is and, in turn, why I'm so passionate about trying to do something about it.  The bottom line is that VEDS is not common enough to have it's own fundraising machine.  So we're working with the Marfan Foundation to get some visibility and support for VEDS. Some Background There are a number of genetic disorders that are classified as connective tissue disorders.  Marfan Syndrome is probably the most well known.  There are other connective tissue disorders, Loeys Dietz Syndrome, and Ehlers-Danlos Syndrome.  Within Ehlers-Danlos, there are 13 subtypes.  The common trait of all these disorders is t

Strength Against VEDS - my new cause

  This is my son, Rob.  He's the one on the right.  He is one of the most generous, articulate, intelligent, and funny people I know. I'm not just saying that because he's my son, it's legit :-) You may already know him.  You're lucky. What you may not know is that he has a genetic disorder called Vascular Ehlers-Danlos Syndrome.  I'll provide more details below. Suffice it to say, it's a very shitty disorder.  In short, people with this disorder don't produce enough collagen.  Collagen is what helps tissues like blood vessel walls and internal organs stay together.  Without collagen, your tissues are prone to tear and rupture.  That's bad...really bad. We only learned that Rob had this disorder in the last few years.  I only recently learned in the last month, that there are organizations that are trying to help.  I will get to my point, I learned that there are a family of connective tissue disorders and they're pretty rare.  In fact, we didn&#