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Posts Tagged ‘Mark Roithmayr’

Tune in TODAY for Autism Speaks’ Analysis of the DSM-5

January 20, 2012 19 comments

Tune-in today to hear Autism Speaks’ leadership discuss the recently released analysis of the DSM-5, to be published in 2013, and hear about its potential implications for individuals to receive an autism diagnosis and appropriate services.

Read Geri Dawson’s blog post about the DSM-5, The Changing Definition of Autism: Critical Issues Ahead.

Watch Autism Speaks’ Dr. Andy Shih discuss the story on MSNBC “News Nation with Tamron Hall”

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.

Inaugural Weekly Whirl – Top Events of the Week

December 10, 2011 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.

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.

New York Center for Autism Co-founders Harry & Laura Slatkin, Martha Stewart, fashion designer and Honoree Tommy Hilfiger, Honorary Chair Dee Hilfiger, Emcee and NBC Nightly News Correspondent Peter Alexander, Autism Speaks Co-founders Suzanne & Bob Wright

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.

Sarah Mclachlan

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.

Prime Minister Sali Berisha and Dr. Liri Berisha with Autism Speaks President Mark Roithmayr and his wife Chris

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!

From the President: An Eye-opening Visit to Albania

December 9, 2011 1 comment

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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Tribute to Matthew P. Sapolin (1970 – 2011)

December 2, 2011 9 comments

This blog post is written by Peter Bell, executive vice president for programs and services for Autism Speaks. He oversees the foundation’s government relations and family services activities and also serves as an advisor to the science division. Peter and his family reside in New Jersey, his oldest son Tyler has autism.

Matthew P. Sapolin

My heart is heavy today. A few hours ago, I learned that one of my favorite disability advocates passed away on Tuesday. His name was Matthew P. Sapolin and he was the commissioner of the Mayor’s Office for People With Disabilities in New York City. He lost his fight against cancer, a disease he had been battling most of his life. He was only 41. But cancer wasn’t his disability. He was also blind. According to his friends and colleagues, his blindness informed his life, it did not narrow it. As a dad of a young man with autism, I like that description. The New York Times published a wonderful article about Matthew’s life, his accomplishments and the mark he left on the disability community. I would like to dedicate this tribute to the mark he left on me.

I first met Matthew at a disabilities housing conference in 2010 at the Federal Reserve in Washington, DC.  We sat next to each other and although we didn’t talk much, I was impressed with his ability to navigate all aspects of his life. I did get to know his service dog quite well. He was kind and gentle just like his owner.

In April of that year, Commissioner Sapolin hosted a special ceremony at City Hall to commemorate Autism Awareness Month. He personally attended the event, which honored several advocates from the autism community, and spent considerable time talking with the attendees. He also delivered a speech that made it clear he understood the many challenges people with autism face. His compassion for others was palpable.

Two months later, I joined Autism Speaks co-founder Suzanne Wright for a meeting at City Hall where we talked with the Commissioner about our awareness initiatives and family services programs designed to help people with autism in New York City and beyond. He listened, gave us advice, showed that he cared and importantly offered to help. Exactly the kind of meeting one would like to have with every administrative official!

My fondest memory of Matthew, however, was spending time with him on the South Lawn of the White House in July, 2010. We were there to commemorate the 20thanniversary of the American Disabilities Act (ADA). It was a beautiful day, not a cloud in the sky. Temperatures hovered close to 100 degrees, most of us were sweating profusely. We talked about how fitting it was for the occasion. When it came time for President Obama to walk a line to shake hands with the attendees, it was obvious that only a few would be able to personally greet the President. Suddenly, we were in a “disability mosh pit” vying for our moment of fame.

Matthew’s beautiful wife Candra was at his side but they got separated as the President made his way to our section of the line. I was in the front row and about 30 seconds from my chance to meet the President of the United States. But suddenly I decided that it was more important for Matthew to meet the President than me. That day was about him more than it was about me (or my son with a disability who couldn’t be there). So I turned around, gently grabbed Matthew by the shoulders and guided him to the front of the line where he got his 15 seconds to personally talk with President Obama. I wish I knew what they said to each other.

As soon as they were finished, Matthew swung around and had the most incredible look of joy on his face. I can still see that expression now, it will never leave my memory. He didn’t know where I was standing; he shouted my name and when I told him where I was, he gave me a big ol’ hug. Candra handed me a camera (or maybe it was a phone) and asked me to take a picture of them. Shortly thereafter, I managed to get my Blackberry to snap a picture of the President (see attached) as he made his way down the line. It was a surreal moment for all of us and one that will probably last with me forever. And Matthew Sapolin was a part of it.

I haven’t seen or talked with Commissioner Sapolin since. I didn’t know that his cancer had returned. I knew Autism Speaks was working with his office on some autism awareness initiatives but his death came as a complete surprise to all of us. His passing is a huge loss to our community. Not just to Autism Speaks, or the autism and disability community but our community at large. He represented all of us. He showed us how to live courageously as well as compassionately. He stood for those who can’t always stand for themselves. I learned valuable lessons from him and hope to carry these forward as an advocate for the disabled. Thank you for modeling these qualities for us. Rest in peace, Matthew.

(l-r) Matthew Sapolin, New York City Mayor Michael Bloomberg, Autism Speaks President Mark Roithmayr

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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NBC’s ‘Nightly News with Brian Williams’ Features Autism-Friendly Performance of Disney’s ‘The Lion King’

October 4, 2011 5 comments

On Monday, October 3, NBC’s Nightly News with Brian Williams focused their popular “Making a Difference” segment on the autism-friendly performance of Disney’s The Lion King, which was held on Sunday, October 2. Autism Speaks was featured in the NBC piece. The Theatre Development Fund (TDF), a not-for-profit performing arts service organization whose mission includes making theatre accessible for all audiences, piloted the “Autism Theatre Initiative,” to make theatre accessible to children and adults affected by autism, and their families. This was the first ever autism-friendly performance in Broadway history and our own Lisa Goring, vice president of Family Services, provided input and recommendations to TDF and Disney on what alterations could be made to the show to ensure an autism-friendly production for individuals with autism.

Click here to view the entire segment!

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