"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 research being done. I'm one person, but what the hell, I have to do something. So yes, I'm asking you to donate to this charity. I'll meet with whomever I need to get some attention to this disorder. Maybe it takes getting attention from Ms. Doudna, I'll do that. 

Let me leave you today with this story.  I was about 7 years old and I was riding in the car. My mom was driving. We we're stopped at a cross-walk and a man was walking across. He was disabled and couldn't walk very well or very quickly. I watched and I said to my mother, something really stupid, "He needs to move faster." My mom, corrected me, sternly I might add, and said something I remembered all my life, "There, but for the grace of God, go I."

Some people are dealt a shitty hand in life. It's just how life is. Those of us who are fortunate to have not been dealt a bad hand, need to recognize that and be thankful. For me, that means help where I can. If you can help too, that would be greatly appreciated.

If you'd like to join my team on May 4th, you're more than welcome. If you'd like to donate, I would greatly appreciate it and it will help. It's such a small organization, that every contribution is that much more valuable.

You can join my team or donate to the cause here -

Strength Against VEDS - Team SAVED

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