So I guess it’s hardly a surprise that battalions of mothers (and fathers!) out there have joined together to support the campaign effort to raise awareness about Rare Disease Day, February 28. The slogan for this year’s campaign is “Hope – It’s in your genes.”

These parents are simultaneously just moms and dads like any of us, and amazing individuals willing to step forward and try to make a difference. They, and the campaign, deserve our support.

The campaign is simple, as campaign organizers explain:

[an]occasion to inform or remind people that rare diseases need to be paid special attention to, because:

Rare diseases are life-threatening or chronically debilitating diseases with a low prevalence and a high level of complexity. Patients with very rare diseases and their families are particularly isolated and vulnerable ….

The rare disease patient is the orphan of health systems, often without diagnosis, without treatment, without research, therefore without reason to hope.

The lack of specific health policies and the scarcity of expertise translate into delayed appropriate diagnosis and difficulty of access to care.

While it may sound like an oxymoron thousands of rare diseases affect tens of millions of people around the world – 30 million in the U.S. alone.

The Global Genes Project is helping to drive the campaign with information and ways to get involved found here.

There are several easy ways to get involved:

1. Wear jeans and/or a denim ribbon on Feb. 28 to show your support.
2. Follow campaign supporters/leaders like @GlobalGenes @RareDiseases @RareDiseaseDay and @CRDNetwork on Twitter – and Retweet their campaign messages.
3. If you are on Twitter, Tweet out to your followers on Rare Disease Day and trend #raredisease and #blog4rare
4. If you are a Facebook user, get involved, become a fan of the Global Genes Project here.
5. Blog about Rare Disease Day like mom @sneakpeekatme did on her blog “Sneak Peek” – Then send a link to your blog to another mother-activist @supercatcalhoun who is publishing a running directory of Rare Disease Day blogs.
6. And, of course, follow me @SpecTeams and come join the #specialteams – a community for parents, caregivers and supporters of ill or special needs children – for more information, support and opportunities on efforts like Rare Disease Day.

1. should director Kevin Smith be getting an apology from Southwest Airlines because he was pulled off a flight for being too large?
2. And if he did deserve the apology – why him and not every other fattie who has ever been pulled off or charged extra for taking up too much space?
3. And more broadly, what do we all think about airline plans to charge obese people more for air travel?

I mean seriously, at a time when a higher percentage of Americans, Europeans and Asians are overweight than ever before, these are questions that get some seriously emotional responses.  

The actor/director – perhaps known best by fans as Silent Bob from his Clerks movies – was tossed off a flight from Oakland to Burbank for failing to fit comfortably in the seat (reportedly, the pilot per airline policy considered his inability to put down the arm as a safety risk) . Smith immediately fired back in the press and on Twitter, quipping:

I saw someone bigger than me on THAT flight! But I wasn’t about to throw a fellow Fatty under the plane as I’m being profiled. But he & I made eye contact, & he was like ‘Please don’t tell…’

According to several reports, Smith routinely purchases two seats on flights and had originally done so for his flight to Burbank – but ended up flying standby on an earlier flight with only one seat available. As soon as Southwest saw his outraged tweets, they called to issue an apology.

The Smith adventure comes at a time when airlines are struggling to form cohesive policies on overweight passengers.

Though my husband might occasionally joke differently, I am not so rotund as to be unable to fasten the standard seat belts or put down the arm rest, but I’m sure I am not only one who has ever been seated next to someone who can’t.

Case in point: Hubby dearest.

On a full flight from London to New York last year my tall and built, but svelte, husband was sandwiched between me and a gentleman who was quite clearly too big for the seat in which he sat. (And by that, I mean this individual was seriously obese.) My husband tucked in his elbows and leaned into me as far as he could without pushing me into the person on my other side – and got progressively more irate as the flight went on.

When the stewardesses delivered our meal service – my husband and the man next to him jostled for position and ended up consuming their meals one-handed. When the gentleman fell asleep, his muscles relaxed sending his arms and legs further into my husband’s shrinking space. At one point my husband woke up to find the guy’s head on his shoulder. (*snort*)

By the time we reached New York my husband was grumbling and cursing out loud. He was none too pleased that I found the situation humorous.

As a member of the overweight club – I know there is no joke when it comes to flab.

Many of those who are fighting the battle of the bulge have a lot of emotional issues tied to the scale – and highlighting those for all the flight to see a la Mr. Smith can be very damaging.  It’s also, one might potentially argue, a form of discrimination and a violation of individuals’ rights.

What we should be focused on – fat and skinny alike – is working on the Health At Every Size concept and be doing the best we can for our individual bodies.

As for air travel – I can only hope airlines will soon come up with clear, concise policies that can be universally applied without having to publicly drag obese passengers off a flight. There’s got to be a better way to guarantee passengers safety!

And now it’s my turn.

At a time when globalization and the Internet have connected people across the world in more ways than ever possible before, it’s profoundly disconcerting to feel completely alone. And yet, as my family battled to not only survive – but thrive – though my son’s special needs reality that is exactly how I felt.

Most friends, family and colleagues simply could not understand, no matter how much they loved us. When it came time to put in a feeding tube or make the difficult decisions concerning our son’s health, we were inexorably alone. And scared. And angry. And overwhelmed by the amazing love we felt for our son.

I looked everywhere for answers, support, help.  I got bits and pieces from different places- but it exhausted me. And throughout the search the one thing I never found was a safe space.

I’m looking to change that – for parents, caregivers, advocates and supporters of children with illnesses or special needs.

Part one is to tell my family’s profoundly difficult but amazingly rewarding journey in a blisteringly honest way that sometimes scares me. The work, currently titled Born into Battle: Surviving and Thriving Amidst a Child’s Complex Medical Situation, isn’t about the suffering – though that’s a part of journey, it’s about acknowledging the pain and allowing the love to work its magic.

Part two is to reach out and create a place for people to gather and discuss the many emotional, practical and medical issues that we face when caring for an ill or special needs child. As I told @Aspiringmama (a.k.a. Pauline Campos) recently “nobody understands the awe and awful that accompanies caring for a sick child better than others in a similar position.”

I’ve started up a #specialteams trend as @SpecTeams on Twitter and will be hosting a chat every Wednesday evening 8E/7C/5PST U.S. time zone. The first chat is tomorrow, Wednesday, February 17, 2010 and the topic is “Safe Spaces: Sharing the awe and awful.”

They are all elements in one man’s ongoing jihad to build bridges across borders.

Salman Ahmad is a modern warrior, armed with weapons of mass destruction aimed straight at hatred, mistrust and divisiveness. Using his favored tools – a guitar, haunting melodies and poignant lyrics – he is out to tear down barriers and get people around the world to stop and really take a look at each other.

Ahmad is a recording legend in South Asia who counts Al Gore, Melissa Ethridge and Bono as his fans, and has sold over 30 million records with his band Junoon (known as the “U2 of Asia”). He’s a Goodwill Ambassador for the United Nations who has stood up against political and religious fanaticism to deliver his message.

But the truth is a lot of Westerners know as little about Ahmad as they do his home country of Pakistan. While it may have been in the news more than any other country in the world (beside Afghanistan, Iraq, Iran and North Korea) over the last decade, Pakistan remains one of the least understood places on earth.

How do I know? Because I lived and worked there for almost four years after the 9-11 attacks. Because I’ve watched in dismay as Pakistan is repeatedly portrayed as backwater hellhole full of nothing but guns, black turbans and suicide bombers on motorcycles. Because I’ve had to listen, slack-jawed, as other Americans have asked my Pakistani husband – in all seriousness – whether there is furniture in Pakistan or if people just eat on the floor.

In his newly released autobiography “Rock & Roll Jihad: A Muslim Rock Star’s Revolution” Ahmad takes the reader on an enlightening journey that traces both the personal changes he experienced growing up in America and Pakistan, and the bigger changes that have wrought havoc on the generous and strong-spirited Pakistani people.

It’s a great read – sometimes painful, occasionally depressing, but simultaneously funny and uplifting. There’s adventure, romance and a hysterical story about the Rolling Stones’ frontman that is absolutely priceless.

Ahmad does an incredible job of raising the veil of misunderstanding that separates east and west, Muslim and non-Muslim, in a clear demonstration that every person – whatever their ethnicity, religion or nationality – is on a similar journey.

His message of hope and understanding shines through on every page, and much like Junoon’s music “Rock & Roll Jihad” will leave you cheering.

Patrick has an impressive racing resume as the most well known female contender in the Indy Car series and the ARCA Racing Series in recent years. She was the first woman to win an Indy car race with her victory in the 2008 Indy Japan Race and her 2009 third place finish in the Indianapolis 500 was the highest finish in the event’s history for a woman. Patrick is on track to make her debut in the NASCAR Nationwide Series this coming weekend.

In that respect she is a great role model. She’s a capable, determined, gutsy lady breaking down barriers. And she and/or her managers are smart enough to market Patrick elsewhere while she’s a hot commodity.

But beside her late night talk show guest spots, most of her appearances outside the racing world – including two Sports Illustrated Swimsuit Issues (like this one from 2009), numerous racy photos shoots and the GoDaddy.com commercials – seem more apropos to a centerfold wannabe than a race car driver.

It’s not that I mind a sexy looking woman in a bikini – and she certainly looks good – but it infuriates me to see a woman break through into one of the most staunchly male-only sectors of society, only to turn around and play the role of stereotypical sex kitten.

And certainly Patrick is not the only talented or famous lady to go this route in recent years. Beyonce, Rihanna and Britney Spears were all very successful before shortening their skirts, their hair, or list of sexual inhibitions surrounding public displays of affection.

But as a sports star female in the public eye, doesn’t Patrick have a responsibility to the young girls out there who consider her a role model? What kind of message is she sending? Success is great, but you haven’t really made it until you flaunt your body? Breaking barriers is good stuff, but no matter how talented you are, the truth is society will never view you as more than a pin-up girl? It just doesn’t make sense to me.

Maybe I’m a prude. Maybe I’m getting old.

Or maybe not ….. the rankers in USA Today’s 22nd annual Super Bowl Ad Meter agreed. The GoDaddy.com commercials ranked in 61 and 63 place out of 63. (Small aside? LOVE the fact that Betty White and Abe Vigoda scored the number one spot!)

End result for Super Bowl Sunday 2010?

Score a massive win for New Orleans and their beloved Saints. Post a major loss for poor taste. 

Now that’s a Super Bowl Sunday worth cheering!

Her supporters believe this the real Mrs. Palin. An attractive do-it-all-modern mom who shoots from the hip, holds nothing back and brushes off emotional punches like a prizefighter.

Her detractors blast her as a manipulative and dangerous talking head that spews vitriol without checking her facts first.

I’ve always straddled the middle – certainly not red, but not quite blue, more a violet purple. I consider myself a liberal conservative. The worst of the worst of the oxymoron.  And I am no different when it comes to Palin ….

I admire her for her chutzpah and her willingness to stay in the ring. I like the fact that she’s a woman in a traditionally man’s world who is strong, unapologetic and keeps a pair of boxing gloves in her purse. I love that she is willing to stand up and try to make a difference in the world around her.

But her naiveté on foreign policy scares me. Many of her political positions (which can change quite rapidly) are in opposition to my own. And I really despise the political blood-sport that seems to rev her followers into a frenzy. I get sick to my stomach when uninformed throngs seize on a single sentence and deconstruct efforts to make things better instead of contributing to an educated conversation.

However we feel about Palin as individuals she’s built her persona and platform on being the outsider, the rogue – and it works for her.

So I had to laugh when I saw the following in the New York Times about her address this weekend:

“This is about the people, and it’s bigger than any one king or queen of a tea party, and it’s a lot bigger than any charismatic guy with a teleprompter,” she said.

That was just one of several digs at President Obama. “How’s that hopey-changey thing workin’ out for you?” she asked at one point.

Whether she chooses to acknowledge it or not – while her tactics are different, she is building her campaign (for what office I’ll leave it to the pundits to argue) on some of the same things Barack Obama did during his meteoric rise to the highest office in the land.

She is change. She is something new. She is the outsider. The ROGUE.

And that is what many of her supporters profess to love the most about Palin. They’re so excited by her message that on the Going Rogue book signing tour stop I covered for a story in November, hawkers were already selling “Palin 2012” pins (and, a-HEM, yes, I did actually buy one just in case… oh, and Palin was actually really, really personable, as were the family members traveling with her).

This weekend Tea Party supporters shook the rafters with chants of “Run, Sarah, Run” after she finished her speech.

Well, she might want to give Obama a call before she makes any decisions.

He’s had a heck of a lesson in the way Washington works over the last year. Outsiders don’t remain outsiders for long. The black hole of party-and-election-interest-dominated policymaking has sucked in just about every politician to hit the D.C. streets in the last fifty years…..

…and, well, history really does have a funny way of repeating itself …

The blogosphere, twitterverse and other online forums proved to be effective rapid-reaction communications tools when a massive earthquake devastated Haiti on Jan. 12. Outside Haiti, the Internet exploded with posts and tweets providing donation information, suggestions to help people search for loved ones and heartfelt entreaties to lend a helping hand. From inside Haiti survivors tweeted eyewitness accounts and offered to help locate loved ones, uploaded information to MySpace, YouTube and Facebook.

Did all this online activity dig people out from under collapsed buildings? Did it put bandages on bleeding wounds? No, of course not.

But it did provide an almost immediate platform for people to come together, share information and reach out with compassion and do what they could to help Haiti.

All this activity quickly caught the notice of major news organizations. As BBC News Monitoring Analyst Lewis MacLeod blogged:

The Twitter community in fact provided much of the early information on the crisis in the existence of what the Columbia Journalism Review called “the Haitian news vacuum”. The Los Angeles Times quickly created a list of Twitter users believed to be tweeting from Haiti and the New York Times blog The Lede began regularly updating a post with news about the quake. …Curtis Barnard, writing in the Columbia Journalism Review blog, said that nevertheless “the world owes a measure of debt to new media platforms – which will undoubtedly continue to play an important role in Haiti in the days and months to come – for their assistance in facilitating the early response to this disaster”.

Then came the news – via a faked CNN page and Twitter trending – this weekend that Johnny Depp had died in Bordeaux, France as the result of a car crash. News spread quickly. Fans began tweeting “R.I.P.” messages to the star. Until a second wave of news broke – the claim was a hoax.

@tigerkite tweeted: Dear Internet, please use Google. Despite what “hip” newscasts like to say, twitter is not a news source. #johnnydepp=veryalive

@andgbb wrote: #JohnnyDepp was found dead in both London and Paris…#hoax

@ohkaykayy delivered this warning: the internet is obviously warping peoples minds.. taking everything at face value.. #johnnydepp is not dead. the cnn article is from 2004

Nor is Depp the first. Celebrity death rumors are a dime a dozen in the online-verse. Harrison Ford, Miley Cyrus, George Clooney, Natalie Portman, Britney Spears, Jeff Goldblum and Rick Astley are among the celebrities who “died” in the last year online.

The last two weeks have left me with a deep appreciation for the power of new media, and reinforced fears that as traditional media struggles to survive the information people around the world are getting may not be accurate – or even real.

Where is the balance between the two? Does the average Internet user assume enough personal responsibility to replace the digging and fact-checking that traditional journalists do on a story? Is the rush to have information immediately, damaging our long-term perceptions of reality?

I don’t have the answers yet – I guess only time will tell.

First up? John Edwards.

After repeated denials and lots of puppy dog eyes, the former Democratic presidential nominee-hopeful has now publicly admitted that, yes, he is the father of his former mistress Rielle Hunter’s 2 year old daughter.

It was bad enough that Edwards cheated on a wife who has repeatedly battled cancer; worse that he had neither the courage, nor the decency to either walk away if he felt his relationship with his wife was over, or keep his “tool” in the “shed.” He compounded the folly by denying his own child. And then came the “worstest.”

In Edward’s public acknowledgement of paternity, he has the audacity to write: “It was wrong for me ever to deny she was my daughter, and hopefully one day, when she understands, she will forgive me.”

There is so much wrong with that statement that I can do little more than sputter in indignation.

Second? Asif Ali Zardari

This Pakistani politician has been unpopular since before he emerged to become the country’s 11th president. As the husband of slain leader Benazir Bhutto he was long been reviled by the Pakistani public for his ill-concealed greed, ambition and corruption.

It was bad enough that he used his wife’s untimely death to place himself in the President’s chair; worse that one of his first international interactions was too embarrass himself publicly during a 2008 meeting with then Republic Vice-Presidential candidate Sarah Palin by oozing over how beautiful she was and hinting, heavily, that he would like a hug.

Now the New York Times reports, Zardari has emerged (after spending most of 2009 in hiding from domestic critics to avoid public and legislative backlash against his leadership) ready to lead his country into a new decade. That he has no real plan or capability to address Pakistan’s massive economic and security issues doesn’t seem to bother the man known derisively as “Mr. 10 Percent” for his insistence for kickbacks on government contracts.

While Edward’s actions are more immediately and obviously repugnant, there is – thankfully – very little chance he can revive his political career. Zardari’s weaknesses as a leader, unfortunately, have yet to leave him in a similar position.

As I write authorities in Haiti are still struggling to assess the human cost of this natural disaster. Early estimates of the dead go as high as 500,000.

For those wanting to learn more about how we can all help, here’s a quick list of links:

Hollywood Unites for Haiti: Video plea from Heroes’ star and Haiti native Jimmy Jean Louis

Oxfam Haiti Earthquake Response Fund: Links to donate to Oxfam offices worldwide

Organizations accepting donations to help Haiti, AP list of organizations published by The Washington Post.

Help for Haiti after 7.0 Earthquake: updated donation list and information, list compiled by San Francisco Chronicle blog.

Internet users rally charitable contributions for Haiti earthquake victims: Advice for Canadians from The Canadian Press.

How to help Haiti’s quake victims – San Antonio, TX area

Panthers To Collect Donations For Haiti Earthquake Victims – Florida, hockey teams collecting goods

Doctors Without Borders collecting donations – thanks to blog post by Nathan Bransford

Check your local news outlets, charitable organizations and favorite blogs for other options.

 According to this Der Spiegel article from Germany, governments across the European continent are examining legislative ways to trim the fat out of their nations’ diets. Like residents in the U.S. and other regions, Europeans are seeing an explosion of expanding waistlines. Proposals on the table reportedly include more taxes on chocolate in Denmark and fast food in Romania, limits on the use of trans fat in Spain and an end to advertising of sweets to children under 12 in Germany.

 The considerations come at a time when cities and states in the U.S. are stepping up their efforts to improve the publics’ health. As of Jan. 1 California became the first state in the union to ban the use of trans fat in restaurants. California bakeries will have to comply come January 2011.

 New York City under Mayor Michael Bloomberg already banned trans fat use in restaurants and on Monday announced plans to go after salt in restaurant and prepared foods. The city’s health department will reportedly spearhead a national effort to reduce salt levels by 25 percent over five years.

Being one of those lugs who just can’t seem to stay away from fast food (though the fecal findings – see previous post – may change that) there’s a part of me that would like the government to take away the option altogether and let me drown in cabbage soup.

 But chocolate? Seriously?!?!?! There’s got to be a constitutional amendment against that kind of thing!

Honestly now, isn’t it my personal choice whether or not I have one Reese’s cup or two a day, standing in my kitchen in a bathrobe with a silly smile on my face??? I’m pretty sure there’s something in the constitution about that!

I’m being facetious – of course – because there isn’t a single person I know who couldn’t do a better job caring for themselves.  We can all, always, strive towards a healthier lifestyle. (God, I sound like my mother …. )And there is certainly nothing wrong with others helping us towards that goal as long as they don’t come into my house and start rummaging through the pantry.

Health at every size, folks … HEALTH at every size.

Health first, vanity locked in the basement with the rats where it belongs.

Chocolate? On the shelf next to the granola, applesauce and dried apricots.