Autism Speaks Official Blog

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.

A Funny Affair Honoring Tommy Hilfiger
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.

Blue Tie Blue Jean Ball
On December 1, the Los Angeles Chapter held the inaugural Blue Tie Blue Jean Ball. 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.

Autism Speaks Headed to Albania
Hear from Autism Speaks President Mark Roithmayr as he shares about his trip to Albania for the opening of  the Albanian Children Foundation’s Regional Centre for Autism. Liri Berisha, M.D., and her husband the Prime Minister, Mr. Sali Berisha, took every opportunity to note that without Autism Speaks and Suzanne and Bob Wright, none of this would be possible.

QBE $75,000 Gift to Autism Speaks
On December 7, 2011 Autism Speaks received a  $75,000 QBE Foundation Grant from QBE Americas. The grant will fund the development of the Employment Tool Kit. We are thrilled and thankful for their generosity!

This post is by Mark Roithmayr, President of Autism Speaks.

It is before dawn and I am about to depart Albania. What we have learned about autism, Autism Speaks, Albania, and our role in the world is almost too overwhelming and humbling to put into words.

I was there to celebrate the opening of the Albanian Children Foundation’s Regional Centre for Autism, dedicated to helping children with developmental disabilities to receive a diagnosis, appropriate treatment and services.

Liri Berisha, M.D., and her husband the Prime Minister, Mr. Sali Berisha, took every opportunity to note that without Autism Speaks and Suzanne and Bob Wright, none of this would be possible. What a statement! As I looked at the new Centre I was in awe of all they had accomplished in a country the size of Albania. What an amazing accomplishment – and the hope they are now providing to the autism community in Albania was palpable.

In between attending events and dinners, my wife and I visited Albania’s first autism center that has been seeing families the past two years. We witnessed the wonders of the first children receiving ABA therapy in Albania and the success they have had. We met with the therapists, administrators, and Ministers who are now developing the nation’s first National Autism Strategy. And then, in the new Centre, we presented to parents who literally had tears in their eyes because of the hope that is now becoming reality for their children.

The day Suzanne got the UN to unanimously approve the creation of a World Autism Awareness Day made all of this possible. One of our many achievements is making autism a global initiative. Our Global Autism Public Health (GAPH) initiative is moving this forward at an amazingly rapid pace. We are moving nations and bettering the lives of children and families around the globe – and not by ourselves, but by helping other countries to learn from our experiences and providing guidance to create their own programs.

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

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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

Tonight Autism Speaks and the New York Center for Autism (NYCA) will host “A Funny Affair for Autism” at the Plaza Hotel in New York City. Proceeds will benefit Autism Speaks and NYCA. The event will honor Tommy Hilfiger and will feature Seth Meyers and Bill Hader.

This evening is Co-Chaired by Laura & Harry Slatkin and Suzanne & Bob Wright with Dee Hilfiger serving as Honorary Chair. Jonathan Adler & Simon Doonan, Sir Elton John, Ralph Rucci, Adam Sandler, Robert & Michelle Smigel and Vera Wang & Arthur Becker are the event Vice-Chairs.

The event will feature a unique auction of Christmas trees and menorahs designed by Jonathan Adler, Godiva, Tommy Hilfiger, “Late Night with Jimmy Fallon,” Isaac Mizrahi, Adam Sandler, Martha Stewart and Tiffany & Co.

In early November, we launched our latest “Odds” PSAs with the Ad Council. Created pro bono by BBDO, the PSAs feature fashion icon Tommy Hilfiger and NASCAR driver Jamie McMurray, who both generously donated their time to help further the cause of autism awareness. Viewers are taken on voyages through Hilfiger and McMurray’s lives that highlight the extraordinary statistical odds they each overcame on the road to success compared to the startling one in 110 odds of having a child diagnosed with autism. The PSAs end by encouraging parents to visit autismspeaks.org/signs to learn the signs of autism and to seek early intervention if a delay is suspected.

Here’s What We Are Laughing At Today!

Photo Credit: http://www.funny-potato.com/

t&a: wedding dance (the ORIGINAL youtube surprise wedding dance)

Photo Credit: http://www.funny-potato.com/

Bieber After the Dentist

Photo Credit: foodiebuddha.com

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.

This post is by Bob and Suzanne Wright, Co-Founders of Autism Speaks.

The horribly tragic situation at Penn State University is a sobering reminder of what can happen when the powerless have no voice and powerful institutions have no one holding them accountable. It is the cause and effect result of power dynamics at its most extreme, where institutional dominance is protected over the safety and well being of the most vulnerable; where the most trusted have committed the most serious betrayal. We have seen this pattern before with the Catholic Church scandals and now with the allegations at Syracuse University.

Autism Speaks is, first and foremost, a voice for people with autism who often do not have the ability to speak for themselves, nor the resources or power to affect the change our community needs. Sadly, individuals on the autism spectrum are often teased, bullied, and abused physically and emotionally. We continually fight to raise awareness of autism, to educate the public and urge the government to dedicate critical resources for services for people with autism. However, our responsibility as advocates must now extend to a much broader community. To truly exhibit the role of advocates, it is incumbent upon us to stand up for all children, wherever and whenever they are in peril. We must be active protectors of our children – it is not enough to express outrage.

Every organization that exist to advocate for children – big and small, national and local – must step up now, join together and demand action. Justice in Pennsylvania should be our immediate priority. Meaningful, measurable change in how we protect our kids must be the ultimate goal. We have to do more and do better. What happened in Penn State is a shame and a crime. It is also a collective failure. The failure of Penn State was years in the making; we cannot allow it to take years to conclude.

This tragedy must become more than a cautionary tale. It is a rallying call to all those who care about the welfare and well being of children to bring about real change.

·     We call for the U.S. Attorney’s Office to investigate federal crimes that may have been committed to get to the truth and hold those accountable to face the consequences of their collective neglect;

·     We implore other national and local child welfare organizations to stand up and sound the alarm to protect all children everywhere;

·     We ask the governor and the university board to waive its exemption from the state open record law so that parents, families, victims and the media can have access to all the records in this case since 1995.

When a disaster of this magnitude occurs, it is important for all of us to step up and speak out. Bringing our collective influence to bear, we can all make change happen and be the advocates and protectors our children deserve.

Bob and Suzanne Wright
Co-founders, Autism Speaks

1 East 33rd Street, 4th Floor
New York, NY 10016
212.554.0740

In early November, 2011, Dad and I loaded a large painting I’d created for Autism Speaks into our minivan and drove the 1100 miles from Missouri to New York City to present it to them.  Because the painting was so big, it probably took me longer to complete it than any other painting I’ve ever done.  In the middle of the painting is the blue puzzle piece that is the symbol for Autism Speaks.  The overland around the puzzle piece is the color complement of blue, variations of the color orange.  Small hearts are lined up throughout the painting; in the orange area the hearts are warm colors; red, orange, and yellow; in the puzzle piece, the hearts are cool colors; green, purple, and blue.  The hearts are intended to depict the feelings that people with autism have that many people don’t realize they possess.  They also symbolize the love and care that parents, teachers, and other mentors give people with autism.

I presented this painting in a small conference room in the Autism Speaks offices.  Just as you wrap presents up for birthdays and holidays so whoever it’s for can’t see what it is until it’s time, I put a big cloth over the painting as we brought it in so I could “reveal” what it was when I got there.  It was to be hung in that same room, and I understand that in honor of that painting, they renamed it the “Taylor Crowe Conference Room.”  I was videotaped unveiling the painting and talking about it.  A few short hours later, an editor at Autism Speaks put that footage on the web for people on the internet to enjoy.

Although I’ve had my driver’s license for 13 years, because of my autism it has taken longer for me to master the art of driving than most people, so I still sometimes need parental supervision when I drive.  I continually get better and better.  On this trip I got lots of highway driving in, but I also felt I needed experience driving in New York City, so I drove with dad supervising!  It wasn’t so much dangerous as it was slow; it took forever just to get in and out of one street!  Although I needed the experience and Dad said I did great, I never wanna drive in New York City again, it’s just too nerve-wracking!  I was always told that defensive driving is hard with autism because those of us with autism expect other drivers to follow the rules, but drivers in Manhattan don’t drive defensively, either!  They drive offensively!

Former NBC head Bob Wright founded Autism Speaks after his retirement circa 2005 to spread hope and seek help for his grandson who had recently received an autism diagnosis.  Wright and wife Suzanne are very committed to helping their grandson and future generations of autistic children.  I did not see the Wrights on the trip when I delivered the painting, but I did meet them in April, 2010.  On that trip I was involved in a dinner with retired basketball stars from the NBA, including my cousin who played for the Knicks, Bill Bradley.  I got to introduce him when he spoke that evening.  Since Bradley and Wright know each other and both have relatives with autism, that evening was very important to them.  I was quite proud to be there.

Autism Speaks has applauded Governor Andrew Cuomo for signing one of nation’s strongest autism insurance reform measures into law and defended his action in letters-to-the-editor published in the Wall Street Journal and the New York Post.

We are excited that New York Governor Andrew Cuomo has signed into law one of the most comprehensive autism insurance reform measures in the nation, Assembly Bill 8512. This new law requires insurance companies to provide coverage of critical autism therapies for both children and adults. Autism Speaks Co-founders Suzanne and Bob Wright and representatives from New York’s autism community gathered for the bill signing at the Governor’s Office in Albany. For a fact sheet on the new law, go here.

Sponsored in the New York Assembly by Assemblymember Joseph Morelle (D-Monroe) and in the Senate by Sen. Charles Fuschillo, Jr. (R-Nassau,) the new law will provide coverage of evidence-based, medically necessary autism therapies, such as applied behavior analysis (ABA). It will take effect in 12 months – on November 1, 2012 – and allow up to $45,000 a year in ABA treatments with no limits on age or number of visits.

From left, Sarah Milko, UNYFEAT; Susan Hyman, M.D., from U of Rochester (ATN site); Paige Pierce, NYSFT; Jan Campito, ASA Albany; Neil Pollack, Anderson Center; Bob Wright, Co-founder, Autism Speaks; Suzanne Wright, Co-founder, Autism Speaks; Judith Ursitti, Autism Speaks; Assemblyman Joe Morelle, Bill Sponsor; Jim Fahey, Autism Speaks N.Y. Advocacy Chair; Mike Smith, FAIR Autism Media; John Gilmore, Autism Action Network; Peter Bell, Autism Speaks

Autism Speaks Co-founders, Suzanne Wright, Bob Wright, Susan Axelrod, David Axelrod

Citizens United for Research in Epilepsy (CURE) paid tribute last evening to Autism Speaks Co-founders, Suzanne and Bob Wright, with the 2011 Leadership Award at a gala benefit in New York City.  The Wrights were honored for their ongoing work with autism.  Right now, up to 30% of children with autism also have epilepsy.

CURE Founder and Chair Susan Axelrod and her husband, David Axelrod, reported on CURE’s research progress and urged support for cutting-edge epilepsy research to make a future without epilepsy a reality.

During the event, Bob Wright announced a new partnership with CURE; a high-level autism and epilepsy research conference with the National Institute of Neurological Disorders & Stroke at the National Institutes of Health (NIH). The collaboration between CURE, Autism Speaks, and the NIH will take place in spring 2012, and will be critical in developing joint research priorities to pave the way for breakthroughs and cures.  “Through this partnership with Autism Speaks, CURE believes we will begin to expedite research to benefit both causes,” Axelrod commented.

“We want to extend our deepest gratitude to Susan and the Citizens United for Research in Epilepsy for honoring us,” said Bob Wright.  “There are many commonalities between epilepsy and autism and neither have received the funding they merit based on their high prevalence. We are confident this partnership will help provide answers.”

George Stephanopoulos and Alexandra Wentworth returned as co-hosts of the benefit and special guest Peter Sagal, host of NPR’s “Wait Wait… Don’t Tell Me” was the featured CURE auctioneer.

Also receiving awards were Joe Scarborough and Mika Brzezinski of MSNBC’s “Morning Joe” were honored with the Excellence in Journalism Award for raising awareness of the challenges in finding a cure for epilepsy.  Dr. Shlomo Shinnar, MD, PhD, Professor of Neurology and Pediatrics at Montefiore Medical Centerand the Albert Einstein College of Medicine, received the CURE Leadership in Epilepsy Research Award.

Since its inception in 1998, CURE has funded 116 research grants at 71 institutions across 28 states and 9 countries.  The benefit raised over $700,000 for epilepsy research.

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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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