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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.

Enzo’s mom talks insurance

November 30, 2011 12 comments

This blog post is by Jeanie Caggiano. Her son Enzo has autism and she is an Allstate customer.

My little boy, Enzo, is 7 years old.  He was diagnosed at age 3 with pervasive developmental delay. Last year, they gave us a more specific diagnosis that I am still coming to terms with: autism.

Enzo is apparently on the mild end of the spectrum. But that’s not much of a consolation when I get the call from school that he lost it again today and bit a classmate. Or when I go to volunteer at school and a boy in his class comes up to me and says, “You know, Enzo’s crazy.” Or when I call and call and call the other moms in his class to set up a play date and they don’t return my calls. For the parents of a kid with autism, there’s a new opportunity every day for your heart to break.

It’s why Autism Speaks is so essential. Every day, they’re helping families like ours cope with this disability by researching causes and treatments – and advocating for those who can’t speak for themselves.

I’m writing this because I want to tell you about an easy way to help raise money for Autism Speaks. Now through December 31 (we extended the deadline!) December 14th, when you get any Allstate insurance quote, Allstate will donate $10 to Autism Speaks.

They’ve made a pledge to donate up to $500,000. It’s really easy. You just call 866-998-4488 or visit AutismSpeaks.org/Allstate. Get a free quote on any kind of insurance: car, home, boat, life, motorcycle, business, anything.

Everybody needs insurance. I feel better about getting mine from a company that supports a cause I believe in so much. So please get a quote now through December 31 (we extended the deadline!) December 14th, and tell your family and friends about it, too.

Allstate Partnering with Autism Speaks

November 14, 2011 Leave a comment

This post is by Mark LaNeve, the father of twins with autism and Allstate Executive.

I admit it. I have a couple of very personal reasons for wanting Allstate to support Autism Speaks. Their names are Jake and Drew, and they’re my twin sons. They were diagnosed when they were three. They’re now 19 years old. Jake has full-blown autism while Drew copes with a learning disability and autistic-like tendencies. So I understand life with autism.

When a child has autism, their parents, grandparents, aunts, uncles, brothers, sisters, friends and schoolmates are also affected. It sometimes makes people feel helpless, like they can’t do anything.

But you can do something to help. And it couldn’t be easier. From now through December 15 when you get any Allstate insurance quote, they’ll donate $10 to Autism Speaks. Get a quote on coverage for your car, home, life, motorcycle…whatever. You could save money on quality Allstate protection. And your quote will help fund research to treat this growing disorder.

Allstate has committed to donating up to $500,000 to this worthy cause. The more people who quote, the more money gets raised. So please, encourage friends and family to get a free, no-obligation quote. Continuing education and research is desperately needed, so your quote will make a difference. Just call 866-998-4488 or visit AutismSpeaks.org/Allstate today.

On behalf of those who can’t always say it for themselves – thank you!

A friend and neighbor: teen advocate is recognized by NASCAR

November 8, 2011 2 comments

This guest blog post is by 17-year-old Autism Speaks St. Louis chapter volunteer Jake Bernstein. He is one of NASCAR’s 4 finalists for the Betty Jane France Humanitarian Award. If Jake wins, Autism Speaks will receive $100,000. To vote for him, visit: http://foundation.nascar.com/NetCommunity/Page.aspx?pid=1414

You cannot pick your neighbors.  We got lucky.  Max and Charlie are my adorable neighbors.  They are seven-year old identical twin boys on the autism spectrum. Charlie and Max often stop over our house to visit.  We all look forward to seeing them.  Max likes to use our iPad. Charlie is more interested in helping us with household tasks. One day he decided to try to help clean up my bedroom.  My bedroom is quite messy. Charlie entered my room and started picking up papers. I was touched.

Max and Charlie would see me carrying my tennis racket to school each morning during the high school tennis season. They would ask me questions about tennis.  Since both boys were intrigued by my tennis racket, I asked their parents if I could provide them with tennis lessons.  The boys’ parents welcomed the idea and shared that there were limited physical, social and recreational opportunities for autistic youth.   Their interest in my racket was the motivation to create a social and recreational opportunity for my neighbors and other children on the autism spectrum who often lack extracurricular outlets.

Planning a weekly tennis clinic is similar to arranging a game of tennis just on a much grander scale.  Tennis supplies and court space were graciously donated by our local Parks and Recreation Department.  I contacted the local chapter of Autism Speaks for guidance and suggestions on promoting the free tennis clinic.  Barbara Goode from the St Louis chapter of Autism Speaks graciously offered to promote the free clinic on Facebook, Twitter and with email blasts. I also posted the request for volunteers in our local newspaper, my volunteer Facebook page and Twitter postings @stlvolunteen.   There was tremendous outpouring of interest from area high school students to volunteer which allowed us to provide individualized instruction for each child. Each week the children and volunteers returned eager and enthusiastic for another tennis lesson.

My grandmother spotted the information online about the Betty Jane France award for volunteer service.  She nominated me for the award.  I was truly surprised and honored to be selected as a finalist for the award.  Each finalist is given the opportunity to donate $25,000 with the potential for an additional $75,000 to the organization of their choice: I chose Autism Speaks. I know that this monetary donation to Autism Speaks has the opportunity to better many kids’ lives.  The time I spend with Max and Charlie has changed the way I see the world.  The boys can find joy in the smallest object. They have taught me to do the same. It is wonderful to learn from these two little boys.

We would like to express our deepest gratitude to Jake for his support of the autism community, and we encourage everyone to vote for him to win the Betty Jane France Humanitarian Award by visiting:http://foundation.nascar.com/NetCommunity/Page.aspx?pid=1414

I’m not running to win, I’m running to honor

October 25, 2011 10 comments

Team Up! with Autism Speaks is dedicated to raising funds to support the mission of Autism Speaks through endurance events that we partner with.  Our goal with each race is to raise awareness and funds through races. We are dedicated to funding global biomedical research into the causes, prevention, treatments, and cure for autism; to raising public awareness about autism and its effects on individuals, families, and society; and to bringing hope to all who deal with the hardships of this disorder. We are committed to raising the funds necessary to support these goals. Please join our team and help us accomplish our mission!

Billy Mann, father, husband, Autism Speaks Board Member, believer…I am 42 years old, not graceful and not pretty, I’m training hard and a week away from the New York Marathon.  Between online donations, mail-ins and my awesome friends, P!nk and Carey Hart for contributing $25,000 towards the $110,000, we are only about $33,000 away from reaching our goal of honoring the ONE in 110 children. 

TEN REASONS why I’m running the marathon for Autism Speaks

  • I’m running to honor the incredible autism moms out there like my wife for whom every day is a marathon that tests their limits and then some.
  • I’m running to acknowledge children at all ages who, like ours, spend months/years learning how to simply hold a fork, or speak a word or learn to put on their clothes by themselves.  The 5 hours or so it is likely going to take me to complete the 26.2 miles is nothing next to the 40 hours of therapy my son needs every week just to fight for bare basic skills. If these kids can do that, I can push myself to the limits to do this.
  • I’m running for the parents but also to acknowledge the siblings and grandparents—in or out of any organization–that came before my wife and I, to thank them for being on the front line of advocacy before there was an Autism Speaks, before there were any services and they were brave enough to find a way forward.
  • I’m running for parents whose children with autism are now becoming adults with autism. Between now (when my oldest son is 9 years old) and when my family faces this transition, today’s parents who are addressing this will have done so much to benefit families like mine and I want to honor them now, and always.
  • I’m running to honor the high-functioning autism community and say thank you for educating us and ensuring that the world remembers that every individual with autism—however they are uniquely affected– has a voice, an intellect, gifts and talents, a point of view as valuable as any citizen and each individual contribution to our world should be respected, protected, embraced and celebrated.  I am running to say thank you to them, too.
  • I’m running because the human body is not meant to run 26.2 miles but autism makes us go beyond our limits.  I’m running because it’s hard, because it takes me out of my comfort zone, because I feel awkward doing it, because it hurts, because it takes leisure time and sleep from me: all things that our families face every day and it is a small gesture by comparison.
  • I’m running to acknowledge parents and families many of you know but do not realize that right now, silently, they are at the end of their rope and feel that they can’t go on another day struggling with autism’s impact on their lives because they are just strapped emotionally, financially, physically and even spiritually.  These are the parents who will keep my legs moving when I feel I cannot go on any more because they find a way.
  • In the past 7 years since we received our son’s diagnosed, autism prevalence soared from 1 in 166, to 1 in 150, to 1 in 110 (and 1 in 70 boys) in the USA.  It is 1 in 56 in the UK.  It is 1 in 38 in S. Korea.  Every time I share the statistics with people they always ask the same question, “Why?” and all I can say is the truth: we still don’t really know. With the numbers rising much faster than anyone could have imagined, we are lost without raising money. I am running so that when I ask you to give, you know I’m in it with you every step of the way.
  • I’m running to honor Autism Speaks, every local chapter, every advocate, every parent or sibling who wears a pin or has a puzzle piece on their car or baseball hat.  I am running to say thank you for being a safe resource for families like mine.
  • Lastly, I am running for Christian Hildebrand, an extraordinary little guy who God placed in the right hands with the entire Wright family and in so doing inspired real change in the world for all of us affected by autism.

I don’t know if we can reach the $110,000 for the 1 in 110 kids, but the marathon isn’t for another two weeks.  I’m not running to win, I’m running to honor.

Working In Concert to Overcome Autism

October 17, 2011 4 comments

by Oliver Shokouh 

I get questions asked of me all the time such as, “How did you get started? Was it a vision that you had? What motivated you to do this?” If truth be told, there was no grand design, it just grew organically.

In 1976 I started Harley-Davidson of Glendale.  The former dealer had just gone out of business, and HD was desperate for dealers. On a shoe string budget, I moved my wife and three kids from Detroit, Michigan, to Glendale to start a motorcycle dealership. We were barely hanging on financially.  Owning my own shop was a dream of mine and without really knowing how to make it a success, I was fired-up with nothing but sheer determination going for me.

Getting people’s attention was critical.  I needed people to walk in the doors of our dealership. In 1981 I decided to take Harley-Davidson’s lead.  They had just become a corporate sponsor of the Muscular Dystrophy Association (MDA) and I hosted a carnival in the back of our dealership to attract customers and have some fun in the process.  One of the goals was to help improve the image of motorcyclists by giving back to our community. We held our first Biker’s Carnival that same year and raised $1500, which we donated to the MDA.  Initially, the carnival events were a way to market our dealership and its products.  However, my focus changed as a result of the joy I felt when helping others.  It was a profound feeling that changed the direction of my life.  I needed to do more.

In 1984, with a lot of help from a group of friends, the Love Ride was born.  Peter Fonda, who was well-known for his role in “Easy Rider,” got involved and created a public service announcement that gained national attention and won an award.  Robby Krieger, of the Doors, offered to play a concert at our event.  The idea of riding for charity felt great, not just for me but for everyone involved, and our very first Love Ride was a huge success.  We had 420 people attend and we rode from Glendale to Calamigos Ranch in the Malibu hills, where we enjoyed an outdoor barbeque, great music and friendship among kindred spirits.  Little did I realize that we were creating a tradition that would continue for 28 years!

On our 10th anniversary, Love Ride grossed over one million dollars, and our organization attained a status of being the largest one-day charity motorcycle event in the world.  Since 1984 we have donated a net sum of nearly 14 million to children’s charities.

The good times became challenged in 2009, as our U.S. economy slipped into the worst economic decline since the Great Depression.  Our event was not immune and, for the first time in Love Ride’s history, we were forced to cancel our event.  For those who had registered we offered a refund of fees but most declined. So, instead, we held a small, intimate event – much like the old carnival days from the early 1980’s – at our dealership.  Peter Fonda, who has supported us all these years, sat in our dealership and signed autographs for hours.  Every person in attendance had a chance to meet Peter.  The Foundation lost a lot of money that year but we re-tooled and came back in 2010 with a smaller format and with Autism Speaks as our beneficiary.

I’ve been asked, “With all the charities out there, how did you select Autism Speaks?” What moved me, and others on our board to support Autism Speaks, was the fact that we have close friends with autistic children, and hearing this made up our minds: “The most important thing a parent can do for a child is prepare them for the future.  What’s going to happen to my child when I’m gone?  Who will be able to care for him?”  These friends need help with activities of daily living that the rest of us have never had to deal with.  Things we take for granted are much more complicated in a home with an autistic child.  Support to these families is very important and we recognize two specific areas that need help: one is services to help families cope and the other is supporting research for a cure.

Whether people ride motorcycles or not, they can participate in Love Ride.  For those who ride, we depart from our dealership at 10 a.m. on Sunday, October 23rd as one large group led by Jay Leno.  For those who want to drive, there is ample free parking at Castaic Lake Recreational Park.

We encourage fundraising among our participants, and everything is tracked online.  Fundraisers create an online profile where friends, family and co-workers can log on and contribute.  These contributions are tax deductible. The top fundraisers are known as “Top Guns,” and they compete with others to win prizes.

If you’re interested in attending, or know someone who loves music, please share our information.  We are going to Castaic Lake Recreational Park on October 23rd, where country music artists, Montgomery Gentry, and others will be performing in concert.  Jay Leno and Peter Fonda will be there too.  Castaic Lake is a beautiful park with lots of grass, shade trees and hills.  The stage is situated near the edge of the lake and hay bales are set up for seating.  There will be a variety of gourmet food trucks, motorcycle stunt shows, vendor booths and lots of great music all day.  Gates open at 10:00 a.m. and parking is free.  Tickets for the day-long event are $65 with advanced registration. For more details or to donate, visit www.loveride.org.

And knowing that all this celebration is also making a difference for families affected by autism only increases our enjoyment of helping others.

Oliver Shokouh is the founder of The Love Ride, a motorcycle charity event currently in its 28th year.  The Love Ride Foundation, a 501(c)(3) non-profit corporation, exists to raise money for those less fortunate.  Its primary goal is to support children’s charities.

Check out the radio spot running on Go Country!

More than 100 of the nation’s top chefs serve up an evening to remember for Autism Speaks

October 4, 2011 2 comments

Last night was quite a night for Autism Speaks. More than 100 of the nation’s finest chefs put on a culinary extravaganza at the Autism Speaks to Wall Street: 5th Annual Celebrity Chef Gala at Cipriani Wall Street in New York City and was sponsored by Susan and Steven Wise of KRG Children’s Charitable Foundation, Charmz 4 Charity and Puzzlebuilder among other top sponsors. The annual fundraising event – which can easily be described as a foodie paradise – brought together the biggest names in the restaurant world for an amazing evening that raised $1.6 million for Autism Speaks’ research and advocacy initiatives.

The event was emceed by NBC’s “Minute to Win It” host and Food Network personality Guy Fieri, and co-hosted by CBS “60 Minutes” correspondent Lesley Stahl and Lee Brian Schrager of Southern Wine and Spirits of America. It featured a cocktail reception, auction and the unique experience of four-course tableside cooking by nationally acclaimed chefs such as Bravo’s “Top Chef” lead judge Tom Colicchio (Colicchio & Sons); Franklin Becker (Abe & Arthur’s, Catch and Lexington Brass); Todd English (ÇaVa Brasserie); Masaharu Morimoto (MORIMOTO); Wylie Dufresne (WD-50); Terrance Brennan (Artisanal, Picholine); Food Network’s “Chopped All-Stars” champion Nate Appleman (Chipotle) and “Iron Chef”  winner Katsuya Fukushima (Daikaya Restaurant). Autism Speaks Co-founders Suzanne and Bob Wright served as the evening’s honorary co-chairs and Jennifer and Franklin Becker, Susan and Philip Harris, Alison and Duncan Niederauer, and Suzanne and Shawn Rubin served as the event co-chairs.

Highlights from the event include Guy calling Autism Speaks President Mark Roithmayr and KRG Chairman Steven Wise onstage for a “Minute to Win It” contest of stacking apples. Wise wowed the crowd by balancing five apples in about three seconds for the victory! Guests were also treated to a special performance by Rex Lewis-Clack, a young pianist and vocalist who is faced with the challenges of blindness and autism, and opera singer Sam McElroy, who has been coaching Rex on his singing. Introduced by his friend Lesley Stahl, Rex captivated everyone in attendance and received numerous standing ovations. It was a truly masterful performance that equaled the efforts of the illustrious chefs who graciously donated their time and talents to Autism Speaks on a wonderful evening.

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