Let's Make a Change

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

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

  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&#

Hey all, For a number of years, as many of you know,  I have raised money to help fight blood cancers.  It's a personal cause because I know many people who have fought and lost their battles with leukemia or lymphoma, Margie, Dan, Bob, Leonard, Jeff, and the many who continue to fight the battle or are thankfully in remission.  Now I haven't reached out to you in a while as I was busy getting different parts of my own body replaced.  This has kept me off the bike and out of action.  This year I am back in the swing of it and making an active pitch. As I know from previous fundraising campaigns, almost all of use know someone who has been afflicted with blood cancers.  It's an awful way to fight for your life and someday smarter people than I will find a cure.     But here's the catch, they need our help.   (BTW, the page load times on the LLS links are terrible, please be patient or use the facebook link ) Nothing is free and it takes funding to support resea

So you may recall from my previous post that I promised pictures of my puppies in exchange for a donation to support the Leukemia and Lymphoma Society.  Not to fear, the pictures will be on their way.  That is, after Rudi, our little Spinone Italiano puppy grows his fur back. The poor little guy had to have surgery on his eye,  He's okay.  In preparation for the surgery, they had to shave half of his face.  No big deal; not great but not ghastly.  Well after he had his surgery, he had to wear the cone of shame for about two weeks.  When we took him to have his stitches removed, the fur on the top of his head was all matted from the cone of shame rubbing on it.  So after the indignity of having half his face shaved, the top of his head is shaved - pretty much like Friar Tuck.  Now he looks like Two-Face from Batman lore.  That is, if Two-Face was a friar...and a dog.  Anyway, we'll send the thank you pictures once he has grown some of his hair back.  For a seven month old pupp

Before We Get Started The puppies and I watched Game #6 of the NBA Finals and they were just as excited as the rest of the house to see the Golden State Warriors break a 40 year drought since their last NBA title.  I was cheering, the puppies were barking.  I'm telling you, it was pandemonium.  I can't imagine how excited they'll be if the Cal Bears ever win the Pac-12 Championship.  It will happen...someday. Speaking of Puppies You know what else gets them excited, well, besides food, is when they hear that someone has made a donation to help fight blood cancers.  Since the last email, I received at least seven requests for puppy pictures. That is, if you make a donation, I will send you a personalized picture with one of the puppies. For those that have donated, the pictures will be on their way soon.  Poor little Rudi, the smaller puppy, has to have eye surgery and we were hoping to get his picture after the surgery.  You don't really want a picture of a pup