“I know you know that you're an April Fool”

My shenanigan for today is to offer you a refuge from the usual April 1 hijinks. Seriously.

Song/video: “April Fool,” Ronnie Lane

If you enjoyed the tune, there’s an excellent BBC documentary on the artist, the late Ronnie Lane (whose birthday is today, hence the song), available in six parts on YouTube called The Passing Show. Talented musician who had a long streak of bad luck, personally and professionally, but a poet’s soul and a minstrel’s heart.

I wanted to post a video of his most famous song with The Faces but frickin’ YouTube blocks the embedding, so instead here’s the link to “Ooh La La.”

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Do Me a Solid Sunday: ‘Do Fun Stuff’ for Littlest Buddy

Children with a rare disease received three great gifts this month.

Money to research the cause, treatment and cure of their condition.

Broader awareness of their plight.

And hope.

No, I’m not talking – for once – about kids like Thing 1 with juvenile myositis or the $250,000 Pepsi Refresh grant people like you helped Cure JM win (I’ve thanked you for your help, right? Yes? Heck, thanks again!).

Today I’m talking about Smith Magenis Syndrome (SMS), a rare chromosomal disorder that can cause a host of physical and development issues. One child who has this is Littlest Buddy, son of Ryan from  Pacing the Panic Room.

Earlier this year, I told you about Ryan’s effort to create an album of children’s music to benefit a charity that supports SMS.

Well, the guy done and did it.

Big time.

On its August 30th release, Do Fun Stuff, a “kids' album for adults,” charted higher than Kidz Belch Bop Vol. 13,287.

Higher than the soundtrack of Ramp Cock Camp Rock 2.

Higher than Yo Frickin’ Gabba Gabba!

Folks – it debuted No. 1. Look:

You can read how he did it in this article he wrote for Fast Company.

The album has been bouncing around the Top 20 in the weeks since, still no small feat. (I almost said “Little Feat” and linked to one of their videos. Oops. Guess I did.)

So let’s all help him keep it there.

If you haven’t already, go buy Do Fun Stuff on iTunes (all the proceeds go to the PRISMS charity). If you don’t have kids, give it to someone who does. They’ll appreciate how greatly you’ve upgraded their ear-splitting collection of Barney and Raffi tunes.

If you can’t spare the $9.99, write about it on your blog or send a link to this post to someone else who might be able to help.

That’s all. Now, say “so long,” Littlest Buddy.

Video: ”Nothing,” Steve Foxbury, from the Do Fun Stuff album

Technorati Tags: music,itunes,children,charity

(All images courtesy of Ryan’s blog.)

Rare Disease Day: Alone We Are Rare; Together We Are Strong

This “Do Me a Solid Sunday” happens to be Rare Disease Day.

A rare disease is one that affects fewer than 200,000 people. In the United States, more than 6,000 diseases meet this classification and together, these “rare” conditions affect about 30 million men, women and children.

That’s 1 in 10 Americans.

That’s not so rare after all, is it?

These afflictions are also often called "orphan" diseases because pharmaceutical companies have not "adopted" their cause. Why? Because with so few people having these conditions, there is little financial incentive for Big Medicine to develop treatments or cures.

Companies also aren’t stepping over one another to try to create a color-coded “cause marketing” campaign for a disease only handful of people have. The “corporate giving” many executives love to brag about to the media unfortunately tends to really be more of a strategy to build a brand’s image among a broad demographic of consumers than anything else. As such, rare diseases simply don’t offer much bang for the buck.

But that’s good business, right? Nothing personal.

Unless, of course, you or your child have one of these rare diseases.

Instead, affected families often either start their own mini-movements or, like our family did, throw themselves wholeheartedly into an existing grassroots organization that tries to make up for its size with its passion. (I know you’re expecting me to plug Cure JM Foundation and talk yet again about my daughter’s juvenile dermatomyositis -- DANG IT! I just did, didn’t I? -- but you’ve probably had enough that by now from me.)

Instead, I want to draw your attention to Ryan from Pacing the Panic Room and his son, Littlest Buddy.

Several months back, LB was diagnosed with Smith-Magenis Syndrome (SMS), a chromosomal disorder that can cause a host of physical and development issues. SMS was only first identified in the 1980s so that combined with its rare status means what little information out there on it isn’t very fulfilling or comforting. It’s a frightening and frustrating situation for Ryan and his wife Cole to be in (read his “Running on Empty” piece to better understand) and our family knows those feelings too well.

But Ryan and family aren’t sitting around wallowing and cursing. He has been working with musicians and artists to produce a children’s album to raise awareness of SMS and some cash to pay for research studies into the condition. To help promote his cause, Ryan shamelessly stole my idea of a blogosphere-wide day of recognition (Kidding! Kidding! Don’t hit me with that telephoto lens, dude!) and is asking people  to post info on the album on the day of its release.

Simple, huh? No cost to you other than a little of your time and blog space.

If you want to help Ryan out, read this post from his Web site and follow the instructions. He’ll get in touch with you when the time is right.

I hope each of you can spare a few minutes today at www.rarediseaseday.org to learn more about this day and maybe even offer some support to a needy “orphan.”

As the day's slogan goes, "Alone we are rare. Together we are strong."

Technorati Tags: Rare Disease Day,orphan diseases,children

Do Me a Solid Sunday – Anissa Mayhew Style

Anissa Mayhew and I first bonded over pediatric disease.

No, not the malady of raising children though that should be considered for the next edition of the Diagnostic and Statistical Manual of Mental Disorders.

The diseases that our children have.

Or, in her case, had.

Shortly after I first commented on one of her posts, we began an off-and-on exchange of shared experiences, bon mots and one-upping each other in e-mails and comments on each other’s blogs.

Kinda like a childhood-illness poetry slam: leukemia mom versus autoimmune dad. My kid’s T cells could whup your kid’s B cells any day, bee-yatch! Bring it on.

One day, out of the blue that summer of 2008, she made a small donation to support Cure JM Foundation, the organization that funds research into my daughter’s juvenile dermatomyositis.

I thanked her.

Then I told her not to do it again.

She had her own causes to rally ‘round while she attempted to run her zoo of three wee ones while her husband worked a state away. Focus, woman, focus! Man who catch fly with chopstick accomplish anything.

Revenge was mine a short while later when I donated to one of the cancer charities she supported. Take that tumors!

A few months later, I asked all of you to consider making a donation to Cure JM to mark my wife’s birthday … aaaaaand, you can figure out what happened.

I think if I specifically wrote in that post “Anissa – don’t even think of donating this time” she would have giving twice as much just to flip me the bird via PayPal.

That’s why she’s so special.

That’s also why I’m not in charge of Cure JM’s fundraising.

This past October, a year after our first online encounter, I finally got to meet Anissa – which I think shocked her because … well, what’s the name of this blog, people? Our meeting required me, for only the second time ever, to venture into the nearby borough and distant planet of Manhattan solo. (The first time was to pick up My Love’s engagement ring. I know. I’m gagging at the thought, too.)

I thanked her for what she had done for me and my family and always sharing her perspective and hope about raising a child with a serious illness. That’s an opportunity not everyone gets in life, thanking the people who affect their views on the world, and I’m grateful it happened.

Especially, as many of you know, about three weeks later Anissa had two strokes in one day.

That make three strokes in her short, jam-packed 35 years.

While it looked pretty grim there for a while, the reports from her hubby Peter seem to be getting more and more positive. She posted on Facebook this week and now I’m expecting at least a dozen snarky Tweets from her by spring’s first blossoms.

It’s going to be a long, hard road for Anissa and her family. One they’ve traveled before, one my family is still on with Thing 1’s disease (literally on the road people -- we’re in Chicago today for her quarterly appointment with her specialist).

I’m here today to ask that all of you who have been so supportive of the Mayhews with your prayers, thoughts, cards, donations, e-mails and photos of your breasts (mine, lucky for all of you, are not visible at the 7:43 mark in the video) just keep it up.

Or if you haven’t done something yet, please do.

A family, and a friend, is counting on you.

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Suggestions on how to help Anissa’s family are available at:

• Aiming Low
• The Bloggess
• Hope4Peyton
• Undomestic Diva

Do Me a Solid Sunday - Stamp Out Cancer, Swirl Girl Style

You folks made My Love's birthday extra special this year with your support of my self-proclaimed Cure JM Awareness Day across the blogosphere. I owe you all. Really.

That's why I'm starting an irregular feature called "Do Me a Solid Sunday." It's simple. Now and then, I will recognize one of my regular readers who has a worthy cause to pimp, a good story to tell or access to their parents' liquor cabinet.

My first honoree is Wendy of Swirl Girl's Pearls. I don't know exactly when Wendy and I first ran into each other online, but it seems like forever -- give or take 18 months -- that we started leaving comments on each others' blogs, replying to those e-mails, replying to the those replies, ad infinitium (that's Latin for "neither of us knows when to shut up.")

A few months back, Wendy took part in the American Cancer Society's Relay for Life. I'll let her explain why:

"Last year, cancer affected my life quite personally and painfully. My wonderful dad, Irwin Keller, passed away on January 10th, 2008 from Merkel Cell Carcinoma - are very rare and painful form of skin cancer.  He also sought treatment of Chronic Lymphatic Leukemia for over 20 years.  Not to mention my own diagnosis and recovery with Thyroid cancer. I can't think of anyone whose lives have not been touched in some way by cancer."

I knew Swirl was a kick-ass person, but she actually kicked cancer's ass! Mother Shucker -- how awesome is that? Now I hold her in even higher esteem ... and fear that if I invoke her anger, she will also snuff me out.

Swirl is still a few hundred dollars short of her goal, so if you can afford a few sheckles I'm sure she'd appreciate it by donating at this site. You might even help save a life.

If you can't do that, that's cool. But you should at least stop by this beautiful post of hers about how she meet her true love.

Though if you leave a comment, be prepared for a lengthy e-mail chain to follow.