Let's Make a Change

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...

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 trai...

  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. ...

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 ...

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...

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 ...

I can't believe it's been nearly 4 months since my first update.  Normally I'm more on top of this.  To catch you up, I am raising money to fight Leukemia and Lymphoma - again.  I am taking on a new cycling challenge - again.  And we are planning to ride ~200 miles from Seattle to Vancouver Canada as a way to raise awareness for the LLS program. Oh Canada! First let me apologize for making disparaging remarks about Canada. I know that referring to Canada as America Junior or America's Hat was dismissive of the friendly folks in Canada of whom I know a few.  Henceforth, I have nothing but love for Canada and Canadians.  In fact, I even bought this cycling jersey to wear and show my support for the great white north. Alright, but what have you been up to?  Well we've been training a bunch.  We've ridden hundreds of miles and climbed thousands of feet.  The Team in Training teammates have been hard at work raising awareness and funds t...

Northward Bound A couple years ago a friend of mine said they could tell it was a new year because they started getting emails from me asking them to sponsor me in my fundraising.  Well, last year, as you may recall, I did not hit people up for fundraising.  Instead, I asked them to join me on riding a century and that I would sponsor them.  Pretty magnanimous of me, I must say.  A few hardy souls took me up on the offer and they will tell you I made good on my promise. Of course, that was last year.  This year is another story. You see, there are more challenges out there to be met.  And I've found a new one.  Now before you get ahead of yourself, yes, I will be raising money to fight Leukemia and Lymphoma and I challenge you to help me.  I'll come back to that, but first let me tell you what I'm planning to do. Instead of doing a run-of-the-mill 100-mile ride, I have signed up to do a 198 mile ride from Seattle to Vancouver Canada. ...

Welcome back; I know it's been a few months.  Last time I wrote, I told you about my plans to recruit people to train with me to do a century ride and to raise money to fight blood cancers . I was happy to say, four people took me up on the offer.  For their efforts, I ponied up and supported their fundraising for a minimum of $50 each. Of course, I'm not writing to be self-congratulatory.  Nope, I'm writing about this dog.  This is Koda.  He is a fine looking animal.  He belongs to my friend Jennifer, who happens to be one of the four people that agreed to join me with Team in Training.  Well, Jennifer has been working very hard at training and fundraising in addition to being a devoted mom to Koda. I have it on good authority that what really makes Koda happy, besides posing for photos, is when his mom gets another donation to support her fundraising efforts.  Look how cute he is with those sunglasses on.  I'm sure you would like to hel...

Happy New Year everyone and Merry Christmas too. Let me start by saying, I'm not asking for money.  That's a switch.  I know my friend Dave said that he could always tell when spring was near because he would get an email from me asking for support for fundraising for the Leukemia and Lymphoma Society.  Last year, as you may recall, I did the Death Ride, and in the process, you fine folks donated over $4000 to support the cause.  Once again, thank you very much. I actually did two Team in Training events in 2014.  The Solvang Century in March and the aforementioned Death Ride.  And I must say, I had a lot of fun.  So when my dear friend K.Sue Duncan called me a month ago to coach for her cycling team, I simply couldn't say no. So here's the thing, I will be coaching as part of the Team in Training America's Most Beautiful Bike Ride team (AMBBR).  This is a century ride that circumnavigates Lake Tahoe.  That's right, on Sunday June 1st, ...

First let me say thank you to all the donors that contributed $4,000 towards the fight against Leukemia and Lymphoma.  Your support was phenomenal and I greatly appreciate it.  Now to work my way through the thank you notes... So the Death Ride happened on July 13th, just about a month ago.  But before I tell you about the Death Ride, let me tell you about another ride.  On September 17th 2011, I was leading my team of riders over hills on the Peninsula.  We had just finished climbing Old La Honda Road and had worked our way over to the descent down Kings Mountain Road.   We started down Kings Mountain, in one moment I could see our path down the tree lined road and in the next moment, I was in an ambulance and a paramedic was asking me if I knew where I was.  From the accounts of the riders I was with, I would guess that 20 minutes of my life were spent as someone else.  I was told that I crashed and that I was talking after I regained consc...

I realize the Higgs Boson discovery was some months ago, but I'm totally a science geek and really like that stuff.  Anyway, I can't believe it's been over a month since my last update.  You'd think I was on vacation... I wasn't.  Actually, I have some good news to share.  I am now re-employed.  Yes, I know many of you didn't know I was ever unemployed.  Seems the startup I was with last year would rather conserve cash than pay for marketing people.  I don't blame them, it's the reality of startups.  So I was on the dole for Christmas and New Years.   Not to fret though, I got a great job working for SAP.  I was contracting since the beginning of March and last week they decided to make me a full-time employee.  Sweet! In an odd twist of fate, SAP was one the marquee customers for my last company, Redwood Systems.  So every day, I see the Redwood's products right above my head.  But enough about that, let's get to the...

Hello Again, I'm back with a bit of an update and some cool news.  First, many thanks to all the fine folks who have donated to the fight against blood cancers.  Your generosity always continues to astound me.  If you want to see how much has been raised, I encourage you to  go to my fundraising page to check it out   While you're there, feel free to click the radio buttons and try entering some numbers.  It's very worthwhile. Speaking of numbers, so the here's an update on the suffering.  By the suffering, I mean the training. First, you have to understand, training for this event is hard.  Not hard like working with differential equations, hard like dragging a dead pig across a desert.  The reason I don't post any pictures of myself is because there are no happy shots - only grimacing shots.  If you've known me a long time, you've noticed that I haven't aged well.  That's okay. I'm fine with that; the grizzled appearance a...

Hello again,  I'm back to clutter your inbox with observations, solicitation and celebration.  If you read my last email/blog post you should have learned about Pork-a-Palooza - The Hamtastic Four and my ongoing efforts to raise funds to fight Leukemia and Lymphoma.  To recap, I am attempting to do my fifth Death Ride.  That's riding my bike 129 miles, 15,000 feet of climbing in one very long day.  That event happens in July.   I'm doing this to raise awareness and funds for the Leukemia and Lymphoma Society.  You know, these diseases won't cure themselves.  So the LLS funds research and patient services.  Truly, it's a good cause and breakthroughs will help many victims. As if the virtuous benefit of donating to a good cause wasn't enough motivation for you, I am also hosting an annual event with my son, Rob.  Pork-a-Palooza is a fete replete with heaps of meat.  This year's Pork-a-Palooza continues to get better.  As ...

Welcome back, it's that time of year when I start popping up in your inbox with messages about fundraising and pork.  Yes, I am the email equivalent of the swallows returning to Capistrano only with less bird droppings.  I realize this may be confusing for new recipients of these emails, so let me explain: Since 2006 I have been raising money to help fight Leukemia and Lymphoma.  I support the Leukemia and Lymphoma Society through the Team in Training program.  I take on a physical challenge to raise awareness and funds for LLS.  In return for supporting my quest, my son and I throw a kick-ass party called Pork-a-Palooza.  More about this year's Pork-a-Palooza in a bit. First, let me tell you why I do this.  I know several people who died from leukemia and lymphoma.  In all cases they were taken from us too soon.  I have met many blood cancer survivors and I know that they would not be here today if not for advances in medicine and resear...

My mom is individually driving a fundraiser Golf Tournament on Sept. 8th. It raises money for Alzheimers and Cooley's Anemia. They have 30 sponsors, so there are lots of prizes to be won plenty of schwag and some nice contests. There's a $10,000 hole-in-one contest. She NEEDS PLAYERS NOW to sign up! Let me know if you're interested or share this message and tell them to contact me. it is a scramble (best-ball) tournament at Empire Ranch Golf Course in Folsom. Entry fee is $125. Sign in at 11:00. Let me know and I'll send you the entry form

Welcome back. It seems like there are a lot of people that are intrigued by the concept of Pork-a-Palooza, my fundraising event.  Let me give you the background.  My son, Rob, and I struck upon the idea a couple years ago when I discovered a recipe for Bacon Explosions.  You see, we were trying to determine the merits of Ham Smash-em-ups when we discovered a recipe for Bacon Explosions and decided, that we found a new culinary treat we had to try.  We did a test run and the results were nothing short of astounding.  With our new found gastronomic discovery we decided we needed to share this with as many people as we could.  Thus Pork-a-Palooza was born. For those that haven’t had a bacon explosion, let me explain what it is.  It is awesomeness, surrounded by greatness, wrapped with awesomeness.  I start with a weave of high-quality, dry-cured bacon arranged in a square, add a layer of ground sausage, and fill the middle with crispy fried ba...

Last week Tuesday, my good friend Scott and I had arranged to meet and review our goals for 2012.  It's a practice we do each year and we do it to keep ourselves honest and, frankly, if you tell someone what you intend to do, there's a higher likelihood you'll actually do it.  It's a good and effective practice. I came with my list of goals and was prepared to start, when Scott told me that his friend Drew would be joining us for dinner.  I didn't expect what he said next.  He said, "When Drew arrives, don't say 'Hey, how's it going because he's likely to tell you.'"  We talked about it further and I said I would come up with another greeting. Drew arrived and I greeted him with, "Hey, I'm glad to see you." Beer arrived.  We talked about cycling and how riding up Mt. Diablo just kicks our overweight butts.  We talked about MMA bouts and how they are kind of homo-erotic.  We talked about work.  Everything was pretty c...

Happy New Year Everyone! By everyone, I mean all you friends and acquaintances that are receiving this blog posting.  So let's get right to it, my holidays were, like pretty much everyone's, pleasant but over too soon.  I got many warm wishes and generous gifts.  I want to highlight one gift in particular. My dear friend Lori gave me a rather unique and unexpected gift.  She enrolled me in the Bacon of the Month Club!  Once a month for the next three months I will receive 1 pound of the world's best bacon.  The first pound arrived a couple days ago and I must say, if you're a vegetarian - this might just get you to switch.  Man oh man, is it tasty. But why am I talking about bacon when what this blog is really about is bike riding and fundraising to fight blood cancers.  Okay, I'm getting to that.  The bacon, like most good bacons, got me to thinking.  In my last message about a month ago, I mentioned that we would do something spe...