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The Heart of the Race is in Corral 7

February 9, 2012 3 comments

By Rebecca Fehlig the National Director, Field & Chapter Development

So my friends who don’t run hear that I’ve completed 6 marathons and usually say, “wow, you must be in really great shape.” Or “I could never do that.” And those who have run with me know my response is very appropriately, “nah, I just run slow.”

Sunday morning I stood huddled in my corral waiting for the anthem to kick off a 26.2 journey will thousands of fellow runners in beautiful downtown Phoenix. As I waited in my goodwill warm up throw-aways, I looked behind me curious how many more corrals were behind me. That’s when it hit home….I was in the last corral. You see, runners are assigned to a corral based on their estimated finish time. In other words, they want to make sure the slow runners down get trampled by the clock watching, Boston seeking athletes.  As I continued to size my fellow corral 7ers up and down since I know we’d be spending quite some time (5 hours actually) together, I started to get sentimental about how much I enjoy this group. Don’t get me wrong, I sincerely admire the stamina and focus it takes to earn a spot in the front corrals. But I personally never felt the joy from watching a clock as my gauge on a meaningful running experience.

If you hang out in corral 7 you’ll see a group that is competitive, but I suspect we don’t strike you as the typical long distance runner. And I strongly suspect most, like me, are there for a much higher purpose that their clock time. My corral mates are definitely a more ‘mature’ crowd. Many are recovering from a variety of injuries, some actually quite serious. And quite a few of us are there because we are not particularly good runners, but we want to support a cause ad agreeing to run 26.2 miles is an easy way to show your dedication for a charity and raise funds to support it. Around me are tribute signs for Cancer, MS, Leukemia & Lymphoma. This is my crowd. I run for autism…and more specifically, I run for Autism Speaks.

I cannot express how powerful and uniting a marathon is amongst runners. And when you display your passion to support a mission through a sport, well, we runners just can’t help but start talking and sharing throughout the 26.2 mile trek. The upside to having a slow race is you just have more time to spread awareness amongst thousands of new running friends. And when they see the blue puzzle piece on my shirt, many inquire

I suspect the charity runners in corral 7 chose there marathons as their distance of choice for another reason beyond fundraising. For this distance does something to your mind, body and spirit that you cannot identify with until you get to mile 24. For some the infamous ‘wall’ is mile 20. My struggle begins at 24. Mile 24 is my wall, or more appropriately, it is my meltdown.

If you are in the autism community, the term ‘meltdown’ is a familiar term. Often confused with a tantrum to those who are not familiar, an actual meltdown, if you ask any parent, is much more serious. When I think of what a person with autism must experience mentally when a meltdown strikes, the following comes to mind: last resort, irritated, uncomfortable, stuck, frustrated, help me, I can’t, stop.

Now please understand that I don’t intent to diminish the severity and spectrum of this neurological disorder by comparing it to a race. But in my attempt to understand those Autism Speaks serves, I can only identify with the ‘meltdown’ that I experience at mile 24.

“But there are only 2 miles left. Buck up and just get through it.” Yes- that is what I think my logical reaction should be at this point, but when your body is depleted, your mind does not always cooperate. In fact, mine searches for an escape. My escape includes me romanticizing the idea if the medics taking me away on a stretcher, sharing some colorful 4 letter words, and a few times…even tears. (I am thankful that mile 24 has few photographers. For as many a fellow runner and obviously a fellow fan of Tom Hank’s League of their Own, have shared, “There’s no crying in running.”)

Training for and the race itself can be hard on your body, especially as I zone in on the “40 and 49” age category, yet it is essential for my mental health. Before each race, I go in knowing it may be my last. And I always go into it with every intention of being ‘meltdown-free’. I suspect my fellow corral 7ers are thinking about the pain felt at their miles 24 as a way to connect to loved ones’ or their own challenges-be it fighting cancer, MS or autism.

Getting to mile 25…that is the key. Just as individuals with special needs have their own desired outcomes unique to their abilities, getting to mile 25 is mine. For once that hurdle of mile 24 is behind me, mile 25 is the light at the end of the tunnel. My spirits lift, my posture improves and my pace increases. “I got through Mile 24…I can do this!” I don’t know if this is how someone with autism feels when they avoid or maybe just survive a meltdown, but I’d like to believe at the end of it, they come out feeling a tinge of hope.

In fact, I imagine the reason my fellow corral 7ers decided to run in Phoenix with me last Sunday was for that one reason…Hope.

Are you Teaming Up with Autism Speaks?? 
Guaranteed Entries are Available, space is limited: 
NYC HALF MARATHON- March 18, 2012 http://events.autismspeaks.org/nychalfmarathon – SOLD OUT 
NASHVILLE ROCK ‘N’ ROLL MARATHON – April 28, 2012 http://events.autismspeaks.org/RNRnashville 
SANTA BARBARA WINE COUNTRY HALF MARATHON – MAY 12, 2012 http://events.autismspeaks.org/santabarbarahalf 
ESCAPE FROM ALCATRAZ TRIATHLON – JUNE 10, 2012 http://events.autismspeaks.org/escapefromalcatraz – SOLD OUT 
NYC TRIATHLON – JULY 8, 2012 http://events.autismspeaks.org/NYCTRI 
CHICAGO ROCK’N’ROLL HALF MARATHON- July 22, 2012 – http://events.autismspeaks.org/teamupchicago 
BOSTON 13.1 MARATHON benefiting AUTISM SPEAKS – SEPTEMBER 16, 2012 – http://events.autismspeaks.org/boston13.1marathon 
CHICAGO MARATHON – October 6, 2012 – http://events.autismspeaks.org/teamupchicago 
NYC MARATHON – November 4, 2012- http://events.autismspeaks.org/nycmarathon

“Autism is like running a marathon, it isn’t a sprint. Patience, focus, persistence and advocacy are the keys to providing our children a brighter future than today.” – Pat Kemp

Weekly Whirl – Focus on Sevenly!

January 20, 2012 2 comments

If anyone knows how hectic life can get – WE DO! That’s why we have created the Autism Speaks Weekly Whirl to fill you in on all of the highlights of the week! The last thing we want is for you to be left out of the loop! Please share with friends and family to spread the word about all of the exciting things going on in the autism community. Keep in mind, these updates aren’t limited to Autism Speaks — we will be featuring news from across the community.

This week we have been partnered with Sevenly, an awesome organization whose mission is, “To raise capital and awareness for the world’s greatest causes.” The Autism Speaks campaign set the record for the most funds raised on the first day! We would like to send a big THANK YOU to all of those who made it possible!

Don’t worry though, you still have until Monday, January 23 to get in on the action! Just visit http://sevenly.org/ and grab some swag!

Autism Speaks Partners with Sevenly for an Awesome Awareness Campaign!

January 17, 2012 4 comments

Autism Speaks has teamed up with Sevenly to create custom designed tee-shirts to spread awareness about autism from January 16th to the 23rd. This is a unique opportunity and won’t last long, so get your swag quick! Every item sold helps the family of an individual with autism in a time of need. Through these funds, we can provide emergency financial aid during times of crisis or unplanned hardship through our Autism Cares initiative!

Sevenly donates seven dollars from every shirt it sells to a different nonprofit organization each week. The company also raises awareness for the nonprofits it partners with through its social media platform, which encourages supporters to like the week’s campaign on Facebook and share it on Twitter.

A Tale of Two Cities

December 19, 2011 5 comments

This by is Ann Gibbons, Executive Director, National Capital

Sometimes I get discouraged.  The slow progress of research and discovery; the painstaking process my son goes through when learning a new skill; the number of times we parents have to reach out to each other to steady one another on an often rocky road.  But a couple things happened recently that made me sit up and cheer at my desk.

I read a note from my boss, Mark Roithmayr, who celebrated the opening of a national autism diagnostic and treatment center to serve families across Albania.  It will also support regional development through the Autism Speaks’ Global Autism Public Health Initiative.

“We are one organization among many,” Mark wrote.  “We are largely supported by families – those who walk and fundraise, one dollar at a time, to change the world. It’s working.”

Now spin the globe half a world away and land in Pasadena, Maryland.  Here we met the seventh grade students at the Chesapeake Bay Middle School and their teacher, Yvonne Embrey.  Pasadena is a small town—12,000 residents—in Anne Arundel County, Maryland, on the Chesapeake Bay.  It is not a wealthy town by American standards, but it is an incredible place.  Yvonne wrote us last April:  “My 7th grade students at Chesapeake Bay Middle School are doing a fundraiser for autism as a service learning activity. In class, the students learned basic information about autism and two students spoke to the whole group of 120 students about their autistic brothers. The students gathered pledges and completed a walkathon on April 27 at Chesapeake High School.”  This was just the beginning of a yearlong dedication to learning about autism and working for our mission.  By year end, the students have raised over $16,000 for Autism Speaks.

The folks in Pasadena, Maryland did not have to support our cause…but they did.  And their acts of kindness are felt here, at home, in the families struggling in their homes in their own school district; and in the homes on the other side of the globe.  It is time to listen, as our motto reads; and we are listening, together.

A Funny Affair Honoring Tommy Hilfiger

December 6, 2011 3 comments

On Monday December 5, 2011 Autism Speaks Co-founders Suzanne and Bob Wright and New York Center for Autism (NYCA) Co-founders Laura and Harry Slatkin honored iconic fashion designer Tommy Hilfiger for his commitment to increasing awareness and support of the autism community at A Funny Affair for Autism – a star-studded evening of fashion and comedy that helped raise over 1.3 million dollars for individuals with autism and their families.

Hosted by NBC Nightly News Correspondent Peter Alexander, the unprecedented event took place at The Plaza Hotel and drew over 400 guests who were treated to a hilarious comedic performance by “Saturday Night Live” stars Seth Meyers and Bill Hader and a special musical performance by the NYCA Charter School. In addition, comedian and Curb Your Enthusiasm star Susie Essman and Lydia Fenet of Christie’s led an entertaining auction of celebrity designed Christmas trees and menorahs, courtesy of QVC and Bethlehem Lights. The menorahs and trees raised nearly $65,000 and featured festive creations by Martha Stewart, Jimmy Fallon, Tommy Hilgier, Adam Sandler, Jonathan Adler, Tiffany & Co., Isaac Mizrahi, and artisans at Godiva.

Tommy Hilfiger, who was presented with the evening’s award by friend and CNN national correspondent Alina Cho, has a longstanding relationship with Autism Speaks as an advocate. Along with his wife, Dee, he co-hosted the Third Annual World Focus on Autism, which brought together first spouses from around the world to discuss solutions to combat the global crisis of autism. In addition, Hilfiger donated his time to appear in Autism Speaks’ new Ad Council public service announcement to help raise awareness about the one in 110 odds of being diagnosed with autism and encourage the public to learn its early warning signs.

All proceeds raised during the evening will go towards Autism Speaks’ research into the causes, prevention, and treatments for autism; as well as to help fund the NYCA, a regional non-profit organization dedicated to addressing the needs of individuals and families living with autism spectrum disorders.

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Media coverage and additional photos from the event:

Wall Street Journal: “A Serious Subject Gets Comic Relief” 

Bloomberg: Scene Last Night

Inaugural Blue Tie Blue Jean Ball

December 6, 2011 3 comments

This post is by Phillip Hain, the West Region Director for Autism Speaks.

On December 1, the Los Angeles Chapter held the inaugural Blue Tie Blue Jean Ball.  In looking back at what made the event so amazing, I attribute it to four key elements: vision, focus, determination, and teamwork.

The first was having a vision.  In a city the size of Los Angeles, there is an abundance of fundraising dinners that do very well, but often people feel obligated to attend rather than having a true sense of wanting to be there.  Years ago while volunteering for Cure Autism Now before it merged with Autism Speaks, I remember helping get ready for an art auction when a gentleman walked into the hotel and wanted to know where to go for an event he was attending with his wife which was taking place that night.  I asked what it was for and he said, “I’m not sure.  Something to do with kids.”  Yes, it was nice to hear he was there to support us, but I also realized that he would not remember the organization the next day.

That took us to the element of determination.  Our committee was looking for an event which people wanted to attend because it was fun—and they would look forward to being there again.  After settling on a theme of music, we came up with the Blue Tie Blue Jean Ball name because it reflected the ideas of enjoyable, unpretentious, memorable and genuine.  We also realized those are the adjectives often used to describe our children affected by autism, making the synergy and concept even more significant.

Because we were working on a shortened timeline, we had to operate as a team.  The committee was just the right size to have enough people with contacts, but not too cumbersome to become unwieldy.  We chose sub-chairs to handle the various major components.  There was no task—big or small—that anyone would not take on.  Whether it was getting things donated, pitching sponsors, creating a Facebook page, or stuffing envelopes, everyone pitched in where they could contribute. The group stayed on course and worked collaboratively.   Bouncing ideas at a committee meeting where someone suggested it would be great if we could get a jean company as a sponsor resulted in another person saying, “We have a contact at Guess whom we can call.”  The result was having the Guess Foundation as the presenting sponsor—for a first year event.

Needless to say we had to focus.  One member had strong contacts in the music industry who worked on getting a major name to headline the show.   Others started getting cool auction items to fit the music theme.  We ended up with really interesting things, such as a bra signed by Fergie, an autographed guitar from Eddie Van Halen, passes to Lollapalooza, and tickets to an Elton John concert in Las Vegas plus an acrylic piece of his piano.

So it wasn’t an accident that over 700 people packed the House of Blues on the world famous Sunset Strip to hear the incomparable, beloved and ever gracious Sarah McLachlan sing some of her biggest hits.  She was introduced by autism mom and Grammy Award-winning singer Toni Braxton.   The show was hosted by comedian Sinbad, who also handled the live auction with humor and zip.  Other music performers were “American Idol” contestant Brooke White, Lucy Schwartz and Diane Birch.  Attendees included Autism Speaks National Board Member Holly Robinson Peete with her husband Rodney Peete, Matt Dallas, J.K. Simmons, Mark Salling, Ed Asner, and “Parenthood” cast members Mae Whitman, Sarah Ramos, Max Burkholder and Miles Heizer.

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2011: A Year of Advocacy Accomplishments

December 1, 2011 2 comments

Tis the season to reflect back on the year’s achievements.

2011 was a banner year for Autism Speaks – and for the autism community in general.  Some of the most significant milestones were reached in the area of public policy.

This year, incredible strides forward were made when Congress passed the Combating Autism Reauthorization Act (CARA), authorizing an additional $693 million in federal funding for autism research, treatments and services over the next three years. In September, President Obama signed the bill with Autism Speaks Co-founders Suzanne and Bob Wright, and Board Member Billy Mann and his family attending the Oval Office ceremony.

Needless to say, this is an incredible win for the autism community which will help advance the support for individuals with autism.

2011 also ends with autism insurance reform laws on the books in 29 of the 50 states, with the addition of California, New York and four other states this year.  This means that more health services will be covered for more people living with autism.

Our fight is far from over.  We won’t be satisfied until all 50 states have enacted autism insurance reform so families no longer have to worry about how to pay for the instrumental development and medical needs of their family members.

Join the fight and support Autism Speaks advocacy efforts to help us hit the ground running in 2012.

Donate now.

(l to r) Rep. Chris Smith (R-NJ); Scott Badesch, president, Autism Society of America; George Jesien, executive director, Association of University Centers on Disabilities; President Obama; Suzanne and Bob Wright, Autism Speaks Co-founders; Gena, Jasper and Billy Mann, Autism Speaks.

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