Bigger News than The Walking Dead Finale

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 you know, or will know, Pork-a-Palooza is a combination smoke fest - where Rob and I prepare lots of smoked dishes - and pot luck.  To round out the menu, guests also bring their pork-themed dishes. This year we will make things more exciting.  That's right, it's a food fest and pot luck and we will be giving awards to those dishes voted best in show.   Email invitations will be coming soon.

So how do you get on this smokey party wagon?  That's easy - make a donation to the cause.  I'm thinking of a number...$50.00 is a good start.  Now if you donate $100 or more, you'll get a jar of my homemade caramel sauce made specially for this event.  Last year I gave out t-shirts and trying to estimate a distribution of sizes just made it a little impractical.  So this year the caramel sauce is one size fits all.

Many people have already jumped on the party wagon.  Thank you to all those who are already supporting the cause.

While all this is happening, there's a fair amount of training going on.  On March 9th I finished my season with Team Awesome at the Solvang Century.  Team Awesome was my group of TnT riders who trained all winter to do, for most, their first century ride.  They too, like all TnT participants, raised money for LLS.   Two of my riders were top fundraisers for the greater team.  So wouldn't it be cool if we could match the fundraising exploits of Team Awesome.  Well I'm certainly going to try.

Remember, please donate at my site Follow this link

Finally, as the holidays of Easter and Passover have just passed, I am reminded of hope.  These holidays tell us that there is always hope and that's what this fundraising is about.  We're fighting today in the hopes that we will defeat these diseases.

Thanks for your time
Steve

Comments

Post a Comment

Popular posts from this blog

Strength Against VEDS - my new cause

Image
  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. ...
Read more

"There, but for the grace of God, go I."

Image
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...
Read more

Some Background about VEDS

Image
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...
Read more