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Posts Tagged ‘katy perry’

Today is World Autism Awareness Day.  All around the world, landmarks will be lit up blue (though we’re still waiting on the White House, Mr. President!) and a plethora of autism bloggers will write about the necessity of awareness and funding.  Some bloggers and advocates will even say things like “we are passed awareness, everybody knows somebody who is impacted by autism.”

I’ve struggled over what I should write about today – it is such a big subject.  This is where my thoughts (and events over the last few days) took me…

***

The Run Luau Run/diary of a mom family has been a big fan of JetBlue Airways for a long time.  They just make traveling easy.  Early on, as brand new parents, we appreciated the simple additions of television screens, but as our family grew and we were confronted with the challenges we face, we came to love the airline even more.  Jess has written a few blog post about them here way back in April 2010  and here from April of last year  and here and here from January of this year.

They way they have listened to the Special Needs community and made changes in the way they do things is exactly what anyone hopes a company would do.

Awareness is working – is it the answer to all our issues as a community?  Not even close, BUT it is a starting point – a place where education can happen, where understanding can happen, where compassion can happen.  None of those thing happen without Awareness.

But it was a phone call and then email I received last Friday from JetBlue that simply blew me away.  If you follow me on Facebook or Twitter you may have already seen this, but I think that it definitely warrants its own blogpost here on Run Luau Run.  Friday afternoon I received a phone call from a gentleman from the JetBlue social media department.  To be honest, I was in the middle of some stressful stuff and I wasn’t really paying attention at first.  I thought he was either trying to sell me something or have me take a survey that I had no time for.  Once he clarified who he was, he simply said that he wanted to send an email to Jess and me and wanted us to keep an eye out for it.  He didn’t say what it was, but he had a feeling we’d get a kick out of it.

The folks at JetBlue knew that Brooke’s birthday was this past Sunday; they also knew that one of Brooke’s favorite characters is Dora the Explorer – so they put this together:

When I show it to Jess, she cried.

When we showed it to Brooke…well, you tell me whether you think she liked it or not:

To top it all off, the day after her birthday, on the first day of Autism Awareness Month, this arrived in the mail from JetBlue:

photo 1

which had this inside:

photo 2

and was filled with all this:photo 3

which Brooke happily modeled:photo 4

My point is this – raising awareness is working, it is making a difference.  Whether it is companies like JetBlue changing the way they do boarding or interact with their passengers or Mophie donating battery packs to help some idiot run 100 miles while using the Charity Miles App or even Katy Perry happily donating 25 blue wigs to a bunch of marathoners, awareness is helping change attitudes toward autistic people.

Today I will wear my Autism pin and just like any other day of the year, talk to whomever is willing to listen about autism – I will gladly talk about insurance coverage, accessibility, adult services, employment, education; I will do whatever it takes to convince people that we need to help make the world better, more accessible, not just for my Brooke, but for autistic people everywhere.

All those things start with one word – Awareness.

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So after yesterday’s post, which I wrote hours before the Mayor cancelled the marathon, many of you commented both here, on Facebook and on Twitter that I would have a whole year now to get Katy Perry’s attention for a donation of wigs.  I have to be honest with you, because I didn’t want to put anyone in an uncomfortable situation, I didn’t tell you the whole truth yesterday.  My struggle with deferment was much greater than a “should I or shouldn’t I run”.

I went to bed on Thursday night pretty much having decided that in the morning I would write to Lara, our amazing Team Up with Autism Speaks coordinator, and let her know I was deferring until 2013.  What I had seen on TV and heard from friends was simply horrifying and I could not see myself running when so many needed assistance.

I woke up at 5AM and instinctively reached for my phone.  I still had another half hour to sleep, but I notice the email alert said I had several emails that had arrived around 3AM.  This is what one of them (from one of Katy’s assistants) said:

Katy would be happy to make a donation of 25 wigs.

My new friend Andrew (Katy’s friend who I had been working with) sent this email:

Just got this email from one of the peeps at Katy’s management!

Which was followed by an email from Gene over at Charity Miles (he knows Andrew and is in the loop):

HOLY COW! THIS IS AMAZING!

I was ecstatic!  It had worked.

Katy Perry was donating 25 wigs!!!

As Gene said, how amazing was that???

Suddenly, I was back in it.  I was going to run New York!

But then reality started to hit me.  The fact that Katy Perry was generously donating 25 wigs to the cause did not change the fact that people in the City and surrounding areas were suffering.  I went back and forth all day, finally coming to the decision that I did.  Fortunately, the mayor finally called the event, taking a huge weight off of my shoulders.  I didn’t mention the wigs in yesterday’s post because I wanted to make sure that it was okay that I did – after all that they did, Katy and Andrew deserved the option of deciding whether or not to be mentioned.

I want to thank Katy and Andrew publicly.  Although the marathon was cancelled, at the very least, the wigs will be waiting for us for the 2013 New York City Marathon – all of you who volunteered to wear one this year have my gratitude and the right of first refusal for next year.

Thank you Andrew.

Thank you Katy.

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To run or not to run…

That is the question I have been grappling with over the last couple of days.

To be honest, even in the midst of Sandy, I was dead set on running New York this year.  So many factors came into play, not least of which was YOUR donations that put me over my fund raising goal in less than 3 weeks forcing me to wear a Katy Perry wig for the marathon.  How could I NOT hold up my end of the deal?  I was running, come Hell or high water…except the high water came…and it devastated parts of Staten Island, Manhattan and New Jersey, along with other parts of the Tri-State area.

Even as of Wednesday, I had no doubt I would be running the New York City Marathon this Sunday, pacing my girl Jersey to a sub-5:00 marathon with my blue wig from iParty; but as I’ve watched the coverage on TV and followed the posts and comments online, my determination has wavered.

The debate is passionate – on both sides.  Run the race. Cancel the race.  Postpone the race.  All valid opinions.  All of them.

My plan was to take the train down this evening, stay at my cousin’s tonight and tomorrow night, run the race on Sunday and then head home.  As of last night, the trains weren’t running, my cousin had no power, and because of the lack of ferry service, the bus traffic was going to be even more congested on race day.

There is no right answer when it comes to holding this marathon, there really isn’t.  Wait…no, let me re-phrase that – there are too many right answers when it comes to holding this year’s marathon.

$350 million could go a long way toward helping speed recovery in those areas of New York and New Jersey most devastated.  In addition, the NYRR is donating $26.20 for every runner that starts the race – that could quite possibly be an additional million dollars to help the City and surrounding area.

But then there’s the massive manpower needed to run an event like this.  The mayor has said that running the race will not take away from disaster relief, but that just sounds like wishful thinking to me.  One man watching over marathoners is one man who is not out there helping those in need, and with another storm approaching, the urgency to get people at least settled reaches a higher pitch.

Several people have approached me about my wearing of the wig – that it may be an added target to those angry spectators that may decide to cross the line.  If I were single and childless, I would laugh such suggestions off, in part because I know that even after 20 miles of running, I can outrun 80% of the population…but I can’t outrun projectiles…and I’m not single or childless.

Just as I gave up ever trying skydiving and bungee jumping the day I became a parent, I can’t put myself recklessly in harm’s way – I’ve been reading the comments online…they ain’t pretty.  In addition, despite the fact that the wig I picked up at iParty is for a charitable cause, I would completely understand if my appearance was taken as a sign disrespect to those affected by the storm.

Too many people are hurting.  I do think that the race should have been postponed or cancelled, but I also feel I owe a debt to all those that donated to the cause – I think that every charity runner is feeling that pressure.

So it is with a heavy heart that I am choosing to defer my entry into the New York City Marathon until 2013.

I wish all those who choose to run the very best; may the day treat you well.  I ask the runners to show residents their deserved respect, being mindful of what those in New York and New Jersey, particularly those on Staten Island, have been through.  I ask that those who disagree with those who choose to run take it out not on the runners but voice their opinions to the NYRR and the mayor.

I’ll be back next year…with my wig.

That’s a promise.

***

I want to thank Lara Collazo for all of the incredible work she is doing for the cause.  She is the organizer of all Team Up events and has been tirelessly working with Team Up runners to make sure they get what they need when they need it.  I also want to apologize to her publicly for choosing to defer so late in the game, especially in the midst of all she is doing. 

AutismCares is actively seeking families affected by autism who are victims of Hurricane Sandy and invites those families to call the Autism Response Team at 1-888-Autism2 (288-4762), En Español at 888-772-9050, or email autismcares@autismspeaks.org to receive assistance. Families may also register directly at www.autismcares.org. Please pass the info on to anyone who might need help.

Another option if you would like to help is http://www.huffingtonpost.com/gene-gurkoff/charity-miles_b_2065234.html .  Long story short, Gene over at Charity Miles will be making a special donation to relief efforts for every person that runs 26.2 charity miles this weekend.  How awesome is he?  Please check it out.

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I thought we had a legitimate shot.  I really did.  A comment from a friend of Katy’s – one degree of separation – that was all it was ever really gonna take; someone her knew her.  I am so appreciative of all the tweets to Katy that you all have posted over the last month and a half; I am grateful to all those who signed my petition to her.

In the end, it just didn’t work out.

Last night, around 3AM, I received an email from Katy’s friend saying he just hadn’t heard back.  He suggested going ahead as planned, taking pictures, writing a post – maybe Katy would comment or re-tweet it.  I can’t afford to buy a wig for every runner who volunteered to run NYC in the blue wig and I certainly can’t ask them to buy their own.

I get it.  I do.  With a schedule like hers, she might not have even seen the emails yet.

It’s too bad, really.  The visual impact of 25 – 50 runners, all wearing blue wigs in support of Autism Speaks would have been fantastic.

It just didn’t work out.

And I am bummed.

***

I know it was a silly thing.

In light of the devastation left behind by Sandy, I know this is ridiculous to even be writing about, but I feel it’s only fair to let those who volunteered their time, tweets and money know that I will still be running in a Katy Perry Blue Wig – it will be the cheap model from iParty; it won’t be hers.

***

It was a long shot at best anyway…I just really thought this one was gonna work out.

Thank you again for all you support.  See you in New York!

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***

If you follow along on Facebook or Twitter, you already know that I’ve started a campaign to capture Katy Perry’s attention and then convince her to donate one of her blue wigs to me to wear at this year’s New York City Marathon.  I started a petition on Change.Org to create a central location to collect your signatures.   If you have a moment, I’d greatly appreciate your signing the petition.  The link is —>HERE<— (or you can click on the image below).  I’ll wait right here while you go over and sign it.

Sign Here!!!

Thanks.

But that’s only one prong of my three-pronged strategy to get Ms. Perry’s attention.

***

Part two also involves you as well, if you are willing.  Members of Team Up With Autism Speaks and I are putting together a Twitter campaign to send a steady stream of tweets to Katy Perry (Twitter handle: @katyperry).  I have no idea how often she reads the tweets that are sent to her.  Based on what I’ve seen on her twitter stream, she receives quite a few tweets – that happens when you have 24 million followers.  Ideally, at any given point during the day, for the next 8 weeks until New York, somebody will tweet to Katy asking her to donate a wig.  Obviously I will be tweeting her on a regular basis, but the more people that do it, the more likely either she, or whoever runs her social media will see it.  If you are up to sending her regular tweets (or even just one tweet), maybe it could look something like this:

Dear @KatyPerry, please let @luau run the NYC Marathon w/ one of your blue wigs for #Autism #Awareness – http://tinyurl.com/c8hf476 #lightluaublue

or

Dear @KatyPerry, please let @luau run the NYC Marathon w/ 1 of your blue wigs for #Autism #Awareness – http://tinyurl.com/c8hf476 #luauisafirework

If you copy and paste either one of those two, you will use all 140 characters while providing her with a link to the petition, with hashtags for Autism and Awareness , which means that the tweet will pop up when people search for either one of those terms.  The link to Twitter is here:

Copy one of the tweets above and then click on the birdie!

The first coordinated Twitter-fest is tomorrow (Tuesday the 25th) at 10:30AM.  Hopefully if hundreds of people send her the same tweet at 10:30AM (EST), it might get noticed.

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Finally the third prong of my strategy may or may not involve you – do you know Katy?  Somebody out there has to know her, right?  or at least someone who knows someone, whose uncle has customer who once dated a girl who is the sister of a guy who went to school with a girl whose aunt’s best friend’s son dated a girl who is one of Katy’s dancers?  Somebody, somewhere out there could let Katy know, right?  Okay, seriously though.  I’m trying to work through some people who work with people in the music industry, but if you know someone who knows her…or better yet, if YOU know her, I would love the opportunity to pitch my request to her.

…because I would look much better in this wig…

…than in this one!

***

So that’s it – my three pronged strategy: petition, twitter-bomb and finding somebody who might know somebody.  If you have suggestions on how better to reach her, please email me (runluaurun at gmail dot com) – I am open to any and all suggestions.

Don’t forget, 10:30AM tomorrow morning (EST).  I appreciate any and all help…even if it’s just passing this or the petition link or the tweet along.  Whether I succeed or not, I have a feeling that this will make a great starting point for my motivational speech the night before New York.

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As of 8:45 PM, September 14:

Which means:

I will be running the 2012 New York City Marathon with the Katy Perry Blue Wig.  Thank you to all who have donated to my cause.  I am blessed to have you in my life.  For those who would still like to give, please consider giving to Jess’ Boston Walk page – her company will match donations made to her page dollar for dollar.  The link is —>HERE<—.

Because you beat the deadline by a full day, I will be wearing this for Boston 13.1 on Sunday:

Thank you again!  You are amazing! I am blessed to know you. I am lucky to have you. I am humbled by your friendship.

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I finally pulled the trigger last week – I officially signed up to run the New York City Marathon for the third year in a row.

And for the third year in a row, I will be running as a charity runner – raising funds for the organization that is particularly close to my heart – Autism Speaks.  I had held off signing up for so long this year because I was busy recruiting many of you to run Boston 13.1 on September 16th (also for Autism Speaks – If you haven’t signed up to run, there are still spaces available.  Sign up —HERE—).

I could go on and on about why I am running and why I need your help, but it really comes down to this:  Autistic people like Brooke face a wide range of challenges both as children and as adults.  Autism Speaks tries to take these challenges on from several different angles – funds raised go to scientific research, social services, development of employment opportunities, and raising awareness.

They work tirelessly to make the world a better place for my Brooke and all autistics who are both like and not like her – that’s how wide the spectrum is.

So I come to you, hat in hand, asking for your help.  I have agreed to raise $3000 by November 4th (that’s on top of the $500+ I’ve already raised for Boston 13.1).  Whether it’s $5, $10, $20, $50, $100 or even the whole darned $3000, I’m asking for your help.

Every dollar counts.

Last year, because you put Jess & I over $10,000 for the Boston Autism Walk, I dyed my hair blue for the marathon.  I figured it would be pretty boring if I did the same thing again, so I’m going to mix it up a little while maintaining the theme.  This year, if you get me to my goal of $3000 by October 15th, I will run in this:

It should make me easy to spot along the way.

Now, if you all really go crazy and get me to my goal of $3000 before September 15th (that’s only a few weeks away), I might just be convinced to run in this:

Come on…you know you want me to do it!  And the truth is, I do owe Katy Perry something for nudging me in the direction I find myself (free training session for you Katy should you ever find yourself in the Boston area).  If it does come to this one though, I may reserve the right to put it up in a ponytail if it gets too hot.

Speaking of Ms. Perry, you may know I am currently working toward a CSCS certification that will allow me to officially work as a personal/team trainer.  My plan is to be certified by the end of March 2013.  How is this significant?  For every $25 donated, I will put the donator’s name into a hat (so $100 would be 4 entries).  On November 1st, I will have Brooke draw out a name.  The winner will receive (after I am certified) 3 training sessions that will include on top of that a full nutritional and physical intake evaluation and a long term program to get you where you want to be.  Hopefully, after three sessions, you will still want to work with me!

If you live outside of New England, I could use some credit card miles to fly to you for a weekend or we could do something via Skype – we can work out those details later.

Okay, so here’s the link to my donation page – http://events.autismspeaks.org/nycmarathon/runluaurun – donate early and often, and remember, every $25 buys you one raffle ticket ($200= 8 tickets!).

You know you want to see me running through the streets of New York with a Katy Perry wig!

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