Sunday, February 28, 2010

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

imageThis “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.)

pacing_panic_room_banner 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."

11 comments:

  1. you both are amazing. I wish you well, and pray for the kids. Frankly, with parents like Ryan and Cole, and YOU GUYS, they are already winning battles.


    xx

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  2. Really and truly, you go above and beyond, Kevin. What an awesome shout out to your friend and to all the people and families that suffer from rare diseases.

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  3. Keep posting stuff like this i really like it

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  4. Gee, never thought I'd be that unhappy and unsurprised to make a list. One daughter with Chronic Fatigue Syndrome here. 17 years old - had it for 5 years. Hang in there.

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  5. As the parent of a child with autism, I share in your frustrations and struggles. We just want our kids to live as normal of a life as possible.

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  6. I myself am the proud owner of a rare disease called Kienbach's disease. It causes the lunate bone in the wrist to die a slow, painful death. I've had some great doctors so it hasn't been too much of a hassle for me, but Angst just had an MRI last week on suspicions that he too might have it. That would be must worse than my own diagnosis.

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  7. Hi Kevin! I'm doing a series of blogs on food additives, GMO's and the remarkable cover-up that is keeping the truth of the DANGERS of this stuff out of the news and away from consumers. (Like Canada will NOT allow the hormone infested milk in their country, based on their tests - we are fed lies about it along with assurances of its safety. I am letting you know about these blogs because there are links for more info and I ask that you help me spread the word about this issue. Godonlyknows how many diseases and illnesses actually come from the pretend food and chemicals we eat and worse of all feed our kids!!!!!! Wake up America!
    suzen
    erasingthebored.blogspot.com

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  8. Ditto on Vodka Mom and Amy@BWC.

    And that book?.......

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  9. I can't thank you enough. I know you know how great it feels when people reach out and help, so thank you for being one of the heroes.

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  10. you make charity cool. way more than any douchebag wearing a ribbon on an armani tux could do.

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