Environmentalists Grasp at the Last Straw

With the Earth having just survived to see another Earth Day (it was Sunday, you heathen), I bring you on its behalf the following public service announcement: Straws suck.

In particular, non-biodegradable, disposable plastic ones.

Be it bendy or rigid, striped or solid, in your drink or up your nose (you ol’ cocaine cowboy, how’d you survive and disco die?), the humble single-use straw is the latest low-hanging fruit the environmentally conscientious are trying to harvest.

To Each Generation of Students Comes the Need to Walkout

I’ve been asking my children about the National School Walkout planned for Wednesday, and they don’t seem excited about it — my questions or this demonstration. 

There’s much debate among their peers about what the walkout aims to achieve, they said, and there’s much more resignation that, regardless, it will achieve nothing. 

Lucky for them, I’ve got experience as a successful high school protester.

This Rare Disease Day and My Daughter

The doctor, to my surprise, almost immediately said we could reduce my daughter’s med doses in the morning and the evening.

“She looks great,” she said Monday.

These words periodically come from the lips of L’il Diva’s specialist, but almost always with a condition or clarification later.

This time would be no different.

#GivingTuesday for Kids with Juvenile Myositis

Hey there, good-looking and generous blog readers.

Remember when we were a community?

Did stupid memes and gave out goofy awards to one another?

Donated blog space to spread the word about a rare condition?

Harassed people on Twitter to text a vote for a bunch of kids in need?

Time to see if that still can happen.

On this ‪#‎GivingTuesday‬, please help the hundreds of children like my daughter, Li’l Diva, who have the autoimmune disease Juvenile Myositis. The best way is to donate to Cure JM Foundation via the CrowdRise Holiday Challenge as our nonprofit tries to win $100,000 for disease research.

To refresh your memory, Juvenile Myositis (JM) is a rare and life-threatening disease affecting one to five children in a million. Li’L Diva was diagnosed with it 11 years ago at age 2. JM can affect virtually any system of the body, and there is no cure … yet.

Cure JM Foundation is a nonprofit organization created and managed by families of children affected by Juvenile Myositis (JM) – the leader of which is My Love. The group’s mission is to provide support for families coping with JM, raise awareness of JM, and fund research that will ultimately lead to a cure. In a decade, Cure JM has raised more than $4 million – much of which has gone to research by buying lab equipment, funding fellowships and paying for various medical studies.

A month in and with a month to go, Cure JM has already raised $61,000 in this contest and is the top fundraising charity of more than 450 vying for the prize – an additional $100,000.

If you can help by donating or spreading the word, all the Uncools would be grateful. Especially if you donated, but still so if all you did was share a link.

Cheers and peace – Un.

To donate: visit the Cure JM Foundation page on the CrowdRise Holiday Challenge website. 

Labor of Love for the Game

My father did not bury bodies for the mob. It only looked that way, every spring and summer, based on the contents of the trunk of his sedan.

Shovels. Pick. Soil rake. Gloves. Pull-over galoshes. A thick, crusty layer of dried mud everywhere.

The only DNA a forensics team would recover, though, would be from dad's sweat, blood and popped blisters.

These tools were not of his accounting trade. They were the ones that helped keep me and my teammates playing on the poorly draining baseball infields of my youth.

I don't carry these implements today, even though the minivan I drive could house half a Home Depot. This is because we have a storage shed full of tools and more at our Little League field. My fellow baseball parents and I used them often all this usually cold then usually rainy then usually hot season.

The Thrill of Victimhood, The Agony of Dehydration

My Love had an air of curiosity in her tone when she said this over the weekend:

“The neighbors said they saw you out running this morning. They said you looked … ‘very intense.’”

“Yep, I saw them,” I said, digging through the mini-fridge for hoppy re-hydration. “And that’s how I look when I ‘m concentrating on not dying.”

I sensed her glare without turning around.

“OK. Concentrating on not dying more than usual,” I clarified. “No one wants to be found a victim while wearing Day-Glo green sneakers and sweaty jogging shorts without underwear.”

+ + +

I run on Sunday to put an end to Juvenile Myositis. I’m about $3,000 shy of my $15,000 goal.

Give online today at http://tinyurl.com/CureOurMegan or send a check to:

Cure JM Foundation
Attn: 2013 Chicago Fundraiser
836 Lynwood Drive
Encinitas, CA 92024

Don’t make me sweat and risk cardiac arrest in vain.

+ + + Don’t be selfish – share the love by using one or more of the social bookmark buttons below or in your feed reader. Thanks!

Feat of Clay

You remember this nut, right?

That’s Friend to the Uncool “Daddy” Clay Nichols of DadLabs.com. He ran the Baltimore marathon (26.2 miles in 3 hours, 33 minutes and 35 seconds – I’m spent just typing that) this past October on behalf of my daughter and Cure JM, raking in a pretty penny to help our cause.

Clay wrote about his experience in the latest edition of Austin Man Magazine , and it got me and My Love a little misty. Give it a read, it’s called “Why I Run.” 

One correction: Clay elevates me to founder of the organization. I’m only Cure JM’s pack mule. Or, depending on my mood, it’s chief jackass.

NATIONAL CURE JM FUNDRAISER
JULY 21 IN CHICAGO!
RUNNERS WANTED!

Since we are on the subject, 2013 marks the 10th anniversary of Cure JM’s founding. During that time our all-volunteer group has raised approximately $4 million, the vast majority of which goes directly to doctors and researchers trying to find better treatments and a cure for this rare autoimmune disease that Li’l Diva has had for that entire period.

To celebrate, we are going to the Windy City -- the site of our first national fundraiser – for the Chicago Rock-n-Roll Half Marathon on July 21.

The event has a 13.1-mile run and a 3-mile "mini-marathon" (yeah, like that makes it sound better to sloths like me). If you are a runner or know one who may be interested in participating and raising funds for a great cause that helps sick children, tell them to save the date.

Don't register yet!! We'll get the details and necessary links up on the Cure JM web site soon. This is just for you to mark your calendar and get your training schedules set.

Generating Laughs Through the Storm

Here in the stubby tail of Connecticut, where we are surrounded by two types of damage-causing greenery – trees and hedge funds, we tend to lose power whenever a storm blows through. You name it, we’ve gone Dark Ages during it: Hurricane Irene in 2011, the Nasty Nor'easter of ‘10, the arrival of "The Jerry Springer Show" in ‘09, etc.

Even minor of atmospheric disturbances seem to cause a power grid failure in our slice of suburgatory. As such, I instinctively grab a flashlight when I sense a hint of a breeze or that a member of our household has consumed Mexican food.

These frequent and prolonged outages prove especially precarious to our family as Uncool Estates depends solely on electricity. Not just for lighting and refrigeration but also for heating (electric baseboards!), sewage (injector pump!) and sanity (Excitable and Li’l Diva are surgically attached to iPhones, iTouches and ¡Ay, caramba! who knows what other gadgets).

This spring, My Love and I agreed we had had enough of bad weather and the occasional burrito turning us Amish. We blew a few years of the kids’ college tuition on a standby generator: a 20-kilowatt-creating, blackout ass-kicking savior.

Or so I thought.

What follows is my official “Superstorm Sandy / Frankenstorm” diary:

The Photo Finish

Time to wrap up all this Cure JM/running/fundraising stuff with a whole mess of photos and ::cough, cough:: insightful commentary.This is the only photo I’ve seen of me during the race in which I don’t look on the verge of imminent collapse.

See what I mean? You would expect the next photo to be of me clutching my chest as I yell, “It's the Big One! You hear that Elizabeth? I'm comin' to join ya, honey!”

Uncool Running: A 5K Training Survival Guide

Hi. My name is Kevin. It’s been nine weeks since I started training to run Saturday’s 5K to raise money to find a cure for juvenile myositis.

My lungs are strong. I might take up smoking.

My thighs are -- hey, stop that! My Love does not want you thinking about my thighs.

My calves are chiseled. Like sculpted butter.

I ask, “Where is Jennifer Garner and her rubber gloves when I am in my hour of need?” Yeah, probably oiling down that Affleck clown.

Today, I’ll drive five hours to Baltimore where I will meet my fate. On the outside, I am going to be the happy-go-lucky-sarcastically-whiny ol’ self you’ve learned to tolerate. Inside, I’m going to be a gooey heap of wet linguine because I’ve been carbo-loading for 19 days. My pee is pure starch. Lumps included.

Actually, I think I’m going to be fine. I’ve have never missed or cut short one of my training runs as much as I’ve wanted to. If I can motivate myself without anyone watching, I’m sure I’ll do even better when pushed by several thousand other runners exuding confidence, adrenaline and rancid B.O.

Here’s some of my tips, observations and thoughts from this whole hellish process:

Scribbles Around My Heart

In an uncontrollable fit of neatness to avoid actual work this past weekend, I cleaned my drawers.

Not those drawers, which are done on Monday with the rest of the family unmentionables, but the filing cabinet drawers in my home office. That reminds me, we’re out of Shout.

After sorting through a desk full of paper that means nothing at all, I found a thick packet filled with colors and textures in paints and crayons and markers and pencils and stickers. It was the kids’ artwork from the days when I was still the center of their world instead of that guy who knows all the parental control codes to the household electronics.

I went through all the papers. The homemade Father’s Day cards, the school art projects, the five-minute masterpieces made on long summer days between snack and cartoon breaks.

I pitched a few things that held no special significance, such as a sheet with randomly placed shark stickers Excitable obviously created and a coloring book butterfly outline polka-dotted with splattered water color from the Li’l Diva.

Then there was this:

The Loathing of This Not-So-Long Distance Runner

I'd like to write a real post for you, but I have to run.

Not figuratively. For reals.

One foot in front of the other, knees up, arms pumping. Ooof. I'm breathing heavy thinking about it. Medic!

I'm still stumbling through my training program to help me stumble through a 5K in Baltimore to raise money on behalf of Li’l Diva and Cure JM Foundation next month. With only a few weeks to go, I can say without qualification that when I keel over that finish line I will leave one sweaty but fit corpse.

You may recall that I've had flirtations with jogging before, usually after unsuccessful bouts of buttoning my pants. Nearly of all of these fitness fits ended with not-so-subtle reminders from my body that running is best left to refrigerators.

However, our real family runner, My Love, had knee surgery a few weeks ago following advice from her doctor that the bottom half of her right leg might randomly fall off. This would require us to change her name to Peg.

As a result, I'm taking her place. I'm also working on an apology letter to the National Asphalt Makers and Layers Association.

I've been adhering to a running schedule that I found online (because everything on the Internet is helpful and true) that gradually lengthens my distance and running time in hope of turning this couch potato (honestly, I'm more of a "desk doughnut") into a 5K competitor. Three times a week, I’ve been slogging around the track at school near our house and, as of today, I can confidently report that [checks pulse] I'm still alive.

Running has definitely increased my stamina. I now only require CPR every other run. It hasn't helped with my memory or math skills, though. I've lost count of my laps several times. Sadly, each time my goal was running three.

Yet somehow this past weekend, I managed 2.25 miles (3.62 kilometers for the metrically inclined or 7920 cubits for those building flood arks). It didn’t feel good but I’d be seriously concerned if it did.

The one thing all my huffing and puffing has produced, aside from yellow stains under the armpits of several T-shirts, is a smile on My Love’s lips. Every time I roll my eyes and groan "I'm going for a run," her entire face lights up the way mine does when party hosts offer me beer. Of course, these days My Love is on a lot of Vicodin.

Whoa. Look at the time. Let me throw some sneakers on my feet, Band-Aids on my nipples and Vaseline between my thighs. I have promises to keep and miles to go before I write.

And obviously, I have some real issues with chafing.

+ + +

Our family is halfway to our fundraising goal of $20,000. Please throw a few tax-deductible dollars our way to help Li’l Diva and other children with juvenile myositis kick this disease’s butt.

Donate to the Uncools’ FirstGiving page at http://tinyurl.com/JM-donate-online.

$50K Closer to Curing Juvenile Myositis

It’s official.

You have helped Cure JM Foundation win $50,000 to research the cause, treatment and cure for juvenile myositis, the rare autoimmune disease that Li’l Diva and our family has dealt with for the past 10 years.

Your votes, tweets and shared Facebook links helped us receive almost 9,000 votes in the latest Chase Community Giving contest. That put us in 20th place out of more 4,000 (yes – 4,000!) organizations vying for the money.

Not bad for a handful of concerned parents and family members volunteering their time to help the few thousand children in the United States affected by this mysterious disease.

Your kindness to my family and our larger Cure JM family in the past four years has helped us win $300,000 in grants, raise about $50,000 in donations and spread awareness throughout the digital world and beyond.

You wear it well, friends.

Thank you, again and again. Not just from me, but from the children your caring will be helping soon. Here are a few of them:

 

If you’d like to do more, please donate to Cure JM by supporting my “run” (and yes, the quotes are warranted) in Baltimore next month on behalf of Li’l Diva. The goal widget is now posted on the blog home page if you want to check out our progress in reaching our goal.

A Vote for Normal

My Love is perplexed which is annoying because that’s my household specialty.

“How does Cure JM only have 2,800 votes in the Chase Community Giving contest? It only takes a minute and a few clicks on Facebook. I’m not expecting us to win $250,000 again but we should be able to get to number 11 for the $100,000,” she said to me last night after an hour of conference call brainstorming with other parents of kids with juvenile myositis.

She looked at me.

“Hey, I’m trying,” I said. “I’ve Facebooked. I’ve tweeted. I’ve emailed people. Now I’m hitting people up via instant message. I never IM people. My online friends are thinking I’ve been replaced by a pod person who will next be trying to convince them to try some tasty soylent green.”

:: crickets ::

“Soylent green,” I said. “It’s people.”

:: crickets leaping to their deaths::

Then I threw my daughter under the bus.

“Hey, what about the girl? What’s Li’l Diva doing? This is all to benefit kids like her. She has a Facebook account. I hear the youngun’s love the Facebook and the mouse clicking and the liking and the poking!”

Li’l Diva was summoned away from another cringe worthy episode of Dance Moms to face the parental music.

She spoke like the middle-schooler she is.

She said, “I don’t want other kids to know I have a disease.”

Correction. She spoke like the average, normal middle-schooler she is underneath the makeup she started wearing this year to hide the telltale mark of juvenile myositis – the bright butterfly rash across her face.

My Love and I looked at one another.

“You don’t have to say you have the disease,” My Love said. “Say you are just trying to help kids who do have it.”

All I could do was nod.

+ + +

Cure JM Foundation, the tiny nonprofit that searches for a cure for our daughter's autoimmune disease, is SERIOUSLY in the running for $100,000 from Chase Community Giving and still has a chance for the big $250,000 grant.

This is a quick one-time vote (OK - two times if you vote then share the link and someone clicks it; three times if you are a Chase bank/credit card holder) that takes only a couple of mouse clicks. Please vote for us and our charity partner, Rett Syndrome Research, before Sept. 19 and spread the word.

Here’s some details: http://www.curejm.org/chase/index.php

Here's the voting link: http://tinyurl.com/click2curejm-rett

Here’s a 2-minute video that will require a tissue or two:

Cure JM Before I Keel Over Trying

You know those people who obnoxiously tweet, Facebook and blog widget their running times and distances?

I hate them.

I exaggerate.

I only hate every fiber of their obnoxious “put down the Doritos and look at me acting all superior and health-conscious” beings.

Know who hates them more than me?

My Love.

But only because she can’t be one of them.

After running two marathons and three half-marathons over the years to raise money to help find a cure for Li’l Diva’s juvenile myositis, My Love has been officially scratched from the Baltimore Running Festival on Oct. 13, 2012. She goes under the knife next week to repair a torn meniscus in one of her knees.

In her place, will be …

Charity: An Uncool and his Money, Part Duex

My Love and I once found ourselves at a charity wine-tasting, It should have been called a charitable wine-tasting because they we’re all pretty awful.

This explains why we were both sober enough to realize we held the winning ticket in the 50-50 raffle.

UNCOOL: Whoo-hoo! Look at that! (waving wad of twenties and singles) Two hundred and thirty-seven big ones! We got our admission fee back and a little more. Free bad wine for every one!

MY LOVE: Ssssssh! Put it in your pocket before someone comes over here.

UNCOOL: What? You think we have some thieves among us? Muggers? (shudders) Madoffs?

Run for this Cure JM Kid’s Life

The good news is two meds have been dropped from Li’l Diva’s regular routine of pills and shots to keep her juvenile myositis in check.

The bad news is we are visiting a local children’s hospital today so she can get a 4-hour IV of a new med, Rituximab, that may or may not help and carries with it the usual suspects of “rare” side effects.

You know: fever, aches and death from a brain infection.

It’s the see-saw battle we fight regularly; the tightrope we walk between employing a treatment that may finally reset her immune system to its proper working order and risking the potential dangers, short- and long-term, caused by introducing all these toxins into her system.

We have done this for nearly a decade now and we will continue to until the right combination of science and luck cures her. Giving up is not an option.

There’s nothing you kind people do during today’s infusion other than keep her in your thoughts and, if you are inclined that way, your prayers.

If you would like to do something beyond today, here’s my request:

Me on TV. DadLabs TV. Via Internet. So, Me on the Internet. Big Whoop.

Scene: Our kitchen, last night, My Love wanders in from work, exhausted, spent, the day’s burdens pinning her shoulders for the three count. Me – bouncing up and down like a pup, pre-neutering.

ME: “Guess what, honey, guess what? I’m going to be on the Internet!”

MY LOVE: “Uh, you’re on the Internet every day.”

Bubble. Burst. Ka-BLOOEY!

Actually, here’s the deal:

I will be appearing / stuttering / flop-sweating live via Skype today -- Wednesday, May 2 -- at 3 p.m. Eastern time on DadLabs UStream show.

The topic: juvenile myositis, The Cure JM Foundation and the work my family does to find a cure for this rare autoimmune disease that our daughter has been battling with for almost 10 years.

Sounds heavy but you know I won’t be able to go more than 15 seconds without some sarcastic remark that will get me in trouble with the authorities. Or worse, in trouble with My Love.

DadLabs.com, if you don’t know, is a great parenting site whether you are a male or female. Lots of fun videos and information about kid products, parenting technology and general parenting advice … and humor.

You can watch the show without registering, but if you want to comment via chat you need to register here. This show will also be archived for posterity … and future blackmail.

Wish me luck.

Better yet, wish my antiperspirant extra strength.

Naked Again

How desperate are people for me to get rid of this growth on my face?

The folks at Philips Norelco not only sent me, free of charge, their Vacuum Stubble and Beard Trimmer Pro but also their super high-end SensoTouch 3D Electric Razor.

Then they forked over $15,000 to the cause our band of Movember Dads has been growing these goofy things for.

All I had to do is use them … and let the world watch me as I did:

Ahhhh. Smoooooth.

Thing 2 has already said he’ll let me kiss him again since I’m not so “prickly.”

Thing 1 was too busy texting to comment. Once the cell phone battery dies, I’m sure she’ll look up and say something. Maybe even something nice.

My Love … well, she says she likes me better clean shaven but I think secretly she dug the ‘stache. Let her pretend she was snoring next some strange other man every night.

Well … strange, definitely.

# # #

If you want to be smooth like me, I can hook you up with a special holiday rebate on the SensoTouch. Just click that link in the previous sentence.

The FTC Full Monty: Philips Norelco and its PR firm, Zocalo Group, sent me the razor and trimmer for free. No charge whatsoever. I used them, filmed it and wrote about it solely for the money ­- a $15,000 donation to our team raising money to fight prostate cancer. For that, my fellow "bros in mos" and I are incredibly grateful. Nonetheless, the opinions and typos contained in this post remain mine and mine alone.

Technorati Tags: Movember

What’s Worse than Snakes, Indy?

To quote from Raiders of the Lost Ark:

“Marion, don't look at it! Shut your eyes, Marion! Don't look at it, no matter what happens!”

The mustache has only hours to live. Don’t let it die in vain.

Please donate to help the Movember fight against prostate cancer. Our team has raised more than $17,000 this month thanks to generous (and hysterically laughing) people like yourself.