A voice for science

2011 Annual Report Autism Science Foundation l 2011 Annual Report a voice for science

Dear Friends,

When the prestigious journal Nature called the Autism Science Foundation “a voice for science” this year, it summed up our goals in four short words. Advancing autism science is at the core of all we do, through our research grant programs, our educational initiatives, and our family advisory services. Supporting science is what our family members deserve, what our donors expect, and what our staff and board live and breathe every day of the year.

And what a year it’s been. Thanks to you, funding for our pre- and post-doctoral fellowship program rose by over 20%. Studies we funded in past years are already showing results, and our grantees are publishing papers in high-impact, peer-reviewed journals and presenting their findings at national and international conferences. They are advancing our knowledge of autism’s causes and expanding our options for evidence-based treatments.

The contributions of ASF and its leaders in the field are being applauded as well. Our co-founder, Karen London, and her husband, ASF Scientific Advisory Board (SAB) Member Dr. Eric London, received the Advocates of the Year award from the International Society for Autism Research in honor of their years of dedication to autism science. Our founding board member, Dr. Paul Offit, was elected to the esteemed Institute of Medicine (IOM). The IOM provides unbiased, authoritative advice to Congress, helping guide our nation’s health-care policy.

As an organization, ASF won its first award; nonprofit rating agency GuideStar named ASF the number one start-up nonprofit in the nation in the field of disabilities, citing our contribution to the field of autism research, our integrity, and our fiscal discipline.

However, the work we do isn’t measured by the number of journal articles published or the number of awards we win. It’s measured by the number of e-mails and phone calls we receive from families thanking us for steering them toward evidence-based interventions, sending them a relevant journal article, holding a day of learning with top autism scientists in their home city, and giving them a voice on our website and social media applications. Our thanks to all of those families and to our donors, supporters, volunteers, and friends who enable us to do the work we do. Together, we are one strong voice for autism science.

Sincerely, Alison Singer

Co-Founder and President Autism Science Foundation Autism Science Foundation l 2011 Annual Report a voice for science

Accomplishments

In just the first two years since our founding, the Autism Science Foundation has...

• Surpassed the half-a-million-dollars mark; $503,000 in autism research grants has been awarded.

• Launched a third round of pre- and post-doctoral fellowship grants to jump-start the early careers of promising autism researchers. Inspiring • Built a coalition of autism advocacy groups to fund the first national study of autistic wandering via the Interactive Autism Network (IAN). The data showed that half of the children with autism wandered from safe places. Those results were used to create a new medical code for autistic wandering Loving to protect children.

• Sponsored three days of learning and discovery for special educators and parents through the Rockland County Autism Symposium, featuring Hoping Dr. Temple Grandin as the keynote speaker. • Provided scholarships to 44 autism stakeholders, enabling them to attend Caring the International Meeting for Autism Research (IMFAR).

• Served as a strong scientific voice within the autism community, in government affairs, and in major media, including through the CBS Evening Building News, CNN, NPR, The Dr. Oz Show, Good Morning America, and USA Today. Connecting Laughing Surviving

Autism Science Foundation searching • solving • sharing Healing Learning Growing Succeeding Autism Science Foundation l 2011 Annual Report a voice for science

Funding Critically Needed Research

Funding autism research is at the core of our mission. This year, we increased our funding for pre- and post-doctoral fellowships by over 20%. Our focus is on clever young investigators with cutting-edge ideas who need seed money to get their research off the ground. We pair these researchers with established scientists who provide mentorship and training. The government and other funders have cut back on training grants, but we are committed to helping young scientists gather the initial data they need to attract major funding from the National Institutes of Health (NIH), all while encouraging the best and brightest researchers to dedicate their careers to autism.

2011 Post-Doctoral Fellowships: • Dr. Jill Locke and Dr. David Mandell, University of Pennsylvania: “Implement- ing Evidence-Based Social Skills Interventions in the Public School Setting.”

• Dr. Portia McCoy and Dr. Ben Philpot, University of North Carolina: “Ube3a Requirements for Structural Plasticity of Synapses.”

• Dr. Haley Speed and Dr. Craig Powell, UT Southwestern University: “Identifying Impairments in Synaptic Connectivity in Mouse Models of ASD.”

• Dr. Elena Tenenbaum and Dr. Stephen Sheinkopf, Women & Infants Hospital at Brown University: “Attentional Distribution and Word Learning in Children with Autism.”

2011 Pre-Doctoral Fellowships: • Jessica Bradshaw and Dr. Robert Koegel, University of California at Santa Barbara: “Prelinguistic Symptoms of Autism Spectrum Disorders in Infancy.”

• Christie Buchovecky and Dr. Monica Justice, Baylor College of Medicine: “Identifying Genetic Modifiers of Rett Syndrome in the Mouse.”

“It inspires me to know that $10 and $20 donations from affected families are paying for my work. On a bad day, if your equipment National Institute of Mental Health breaks or your experiment fails (NIMH) Director Dr. Tom Insel, ASF Post-Doctoral Fellow Dr. Jill Locke, and –which, at some point, they all IMFAR travel grantee Max Rolison, at do – it gives you an extra boost ASF’s 2011 Scientist Appreciation as you go pick yourself up and Dinner at IMFAR. do it all again.” Dr. Haley Speed as quoted in Nature magazine. Dr. Haley Speed as quoted in Nature magazine. Autism Science Foundation l 2011 Annual Report a voice for science

Sharing Science

Through our educational programs, ASF fosters a learning environment that allows individuals with autism, their parents and siblings, students, and scientists to share their knowledge and expertise. Dr. Temple Grandin, her mother Eustasia Cutler, and ASF SAB member Dr. Emanuel Our Science & Sandwiches program brings together families and DiCicco-Bloom at the Rockland Autism scientists. Scientists benefit from hearing about the day-to-day experiences Symposium. of families, and families hear directly about the latest autism research.

For the third year in a row, we hosted the Rockland Autism Symposium where individuals with autism, teachers, researchers, and parents shared information about school-based interventions and adult services.

Dr. Temple Grandin gave the keynote address. Rockland

ASF also cosponsored the KiDA Autism Summit in California. It focused on the impact of autism on the extended family. Former First Lady and ASF supporter Rosalynn Carter gave the keynote address, focusing on the need to care for and support caregivers.

Through our IMFAR Travel Grants program, we provided scholarships to Over 900 people attended the Rockland 11 autism stakeholders, enabling them to attend the 2011 IMFAR in San Autism Symposium. Diego, CA. After returning home, the grantees shared the information they learned with their communities. The 2011 grantees were:

• Geraldine Bliss – parent • Matthew Carey – parent • Shannon Des Roches Rosa – parent • Mark Fornefeld – individual with self-identified autism • Abby Hare – graduate student • Erin Lopes – parent

• Molly McGrath – individual with self-identified autism and KiDA Massachusetts Institute of Technology Media Lab • Brianna Miller – special education teacher, Newark Public Schools Dr. Wendy Goldberg, Dr. Matt Goodwin, • Sharman Ober-Reynolds – parent and senior research coordinator former First Lady Rosalynn Carter, at SARRC Dr. “Howard Shane, Alison Singer, and • Megan O’Boyle – parent Dr. Connie Kasari at the KiDA Autism Summit. • Max Rolison – undergraduate student

ASF Co-Founder, Karen London, and ASF SAB Member, Eric London, receive the 2011 Advocates of the Year Award from the International Society for Autism Research (INSAR).

Travel grantees Matthew Carey and Shannon Des Roches Rosa at IMFAR 2011. Autism Science Foundation l 2011 Annual Report a voice for science

Strong Voice for Science

ASF brings a strong scientific voice to the autism community. Our scientists and board members are widely sought by the media to speak about autism issues. In 2011, we provided insight and context to numerous national media outlets including NPR, USA Today, CNN, Nature Magazine, the New York Times, The Dr. Oz Show, and even the Colbert Report on Comedy Central.

Dr. Paul Offit faces off against Stephen Colbert.

Our YouTube channel has thousands of views every year thanks to insightful interviews with top autism researchers including Dr. Bob Schultz, Dr. Eric Courchesne, and Dr. David Mandell.

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“The Autism Science Foundation plays an Advocating for Science important role in moving science forward. It has quickly During 2011, ASF staff and board members spoke about autism’s early become a valued collaborator warning signs and the latest autism research at state departments of public in the public-private health covering over 25% of the nation in one year. Sharing the latest partnership described in autism information with health professionals on the front lines is critical to the federal strategic plan for supporting early diagnosis and intervention. autism research.” ASF also built a coalition of autism advocacy groups to fund the first study to quantify and characterize autistic wandering. The data showed that Dr. Tom Insel, director of the NIMH. 50% of children with autism wander from safe places. These results were used to create a new medical subclassification code to protect children by prompt- ing important discussions about safety between pediatricians and parents.

In April, several members of the ASF SAB and staff were invited to the White House to discuss autism policy issues with key administration leaders including Health and Humans Services Secretary Kathleen Sebelius. The discussion focused on improving ways to meet the unique needs of individuals with autism.

ASF President Alison Singer continued to serve on the federal Interagency Autism Coordinating Committee (IACC), having been appointed by the Secretary of Health and Human Services. The IACC writes an annual plan to guide federal autism research spending. The NIMH Director, Dr. Tom Insel, chairs the IACC.

Dr. Eric Courchesne, Alison Singer, and Dr. Bryan King were invited to the White House for World Autism Awareness Day.

With the launch of ASF’s expanded new website and our continued dedication to social media, we now provide daily news about autism research to families around the world. Autism Science Foundation l 2011 Annual Report a voice for science building our community he generous donations we receive are the lifeblood of our work. We are thankful for all the volunteers in our Tcommunity who are creating events to benefit ASF.

On May 8, ASF honored families raising children with special needs at its annual Celebrating Families: Mother’s Day Brunch. This special event offered a relaxed day filled with joy, understanding, and, importantly, ice cream. Debbie and Larry Hilibrand received the Advocates of the Year Award. Pat Schissel, executive director and president of the Asperger Syndrome and High Functioning Autism As- sociation (AHA), received the Caryn Schwartzman Spirit Award, named in memory of autism advocate Caryn Schwartzman. The event raised over $35,000 to support autism research and education.

Alison Singer, Deborah Hilibrand, Larry Over 100 families enjoyed games, Autistic Self Advocate Dr. Stephen Shore Hilibrand, Karen London, Eric London, music, dancing and baked ziti. enjoys the ice cream sundae bar. and Marty Schwartzman at the Celebrating Families: Mother’s Day Brunch.

In June, we kicked off the first annual Scoring Goals for Autism adult soccer tournament in Philadelphia. Volunteers Erin Lopes and Tim Bak, who have a son with autism, organized the tournament. Erin said she wanted to organize an event where people could get a good workout, have fun, and raise money for autism research. For Erin and her family, funding autism research is a critical step toward understanding why so many children have autism and determining which treatments will help children living with the disorder.

Kristie Keenan, Evee Bak, and Lauren Windsor kick off the Scoring Goals for Autism event. Autism Science Foundation l 2011 Annual Report a voice for science

Student Activities

Members of Yale for Autism Awareness: An Undergraduate Organization at Yale College organized an ice cream social at Ashley’s Ice AML Bikers for Charity riders Thomas Slome, Ride Founder Barry Koch, Alison Singer, Cream parlor to raise money for ASF. The David Chenkin, and Michael Chenkin. event is held annually before finals.

The AML Bikers for Charity chose to support the Autism Science Foundation with its annual fundraising motorcycle ride in June. The event was so successful that beginning in 2012 the event will be renamed the AML Bikers for Autism Science Foundation.

December brought the launch of our annual year-end Recipe4Hope campaign which raises funds specifically The Scarsdale High School Autism Science Foundation Student Club was founded this for our pre- and post-doctoral year and held its first Halloween bake sale. autism research fellowships. The centerpiece of the campaign was a short video showcasing the Neiman family of Colorado. They built a snowman together, highlighting how we all have to The Neiman family celebrating their work together to further autism completed snowman. research. The campaign saw a 70% increase in online donations from the previous year. 

In April, Alyson Schwartzman, whose brother has autism, organized a fashion show at Cardozo High School in New York City to raise funds and awareness for autism. Student models wore the colors of the rainbow to symbolize autism. Autism Science Foundation l FINANCIALS

In 2011, we were named the number one start-up nonprofit in the disabilities category by nonprofit rating agency Philanthropedia/GuideStar. GuideStar called ASF “a shining star to those interested in real science and evidence-based interventions.” GuideStar also wrote, “We find this group to operate with the highest level of integrity. They have extremely low overhead. Every dollar possible is put toward autism research.”

Statement of Financial Position – As of December 31, 2011 ASSETS Cash and cash equivalents $ 248,216 Investments 36,755 Security Deposits 2,625 Prepaid expenses 844 Total Assets $ 288,440

LIABILITIES Accounts payable and accrued expenses $ 12,830 Total Liabilities 12,830

COMMITMENTS AND CONTINGENCIES NET ASSETS Unrestricted 275,610 TOTAL NET ASSETS 275,610 TOTAL LIABILITIES AND NET ASSETS $ 288,440

Statement of Activities – For the Year Ended December 31, 2011

SUPPORT AND REVENUE: Unrestricted Temporarily Total Restricted Special events - revenues $ 18,100 18,100 Less: cost of direct benefits to donors (1,160) (1,160) Net revenue from special events 16,940 16,940 Contributions 386,411 12,000 398,411 Program Fees 15,000 15,000 Contributed services 90,000 90,000 Other income 50 50 Interest income 175 175 Investment income 15,343 15,343

Net assets released from restrictions 12,000 (12,000)

TOTAL SUPPORT AND REVENUE 535,919 535,919

EXPENSES: Program services 426,089 426,089 Management and general 42,550 42,550 Fundraising 69,554 69,554

TOTAL EXPENSES 538,193 538,193

Change in Net Assets (2,274) (2,274) Net Assets - Beginning of Year 277,884 277,884 Net Assets - End of Year 275,610 275,610

The complete audited financial statements including related notes and the Lederer, Levine & Associates, LLC opinion as independent auditors, may be obtained by writing to Autism Science Foundation 28 West 39th Street, #502, New York, NY 10018 or to the New York State Department of Law, Charities Bureau, 120 Broadway, New York, NY 10271. Autism Science Foundation l FINANCIALS

Autism Science Foundation Autism Science Foundation Eric London, MD Board of Directors Scientific Advisory Board New York State Institute for Basic Alison Tepper Singer Emanuel DiCicco-Bloom, MD Research in Developmental Disabilities Founder and President University of Medicine and Dentistry, Catherine Lord, PhD New Jersey Center for Autism and the Developing Karen Margulis London Brain, New York Co-Founder Joseph Buxbaum, PhD Seaver Center for Autism, Gregg Ireland David Mandell, ScD Mount Sinai School of Medicine Capital World Investors University of Pennsylvania Sharon Humiston, MD, MPH, FAAP Michael Lewis Matthew State, MD, PhD University of Missouri Esquire Yale University School of Medicine Bryan King, MD Paul A. Offit, MD University of Washington Children’s Hospital of Philadelphia Autism Science Foundation Staff Ami Klin, PhD Jonathan Carter Marcus Autism Center, Emory University Operations Manager Harold S. Koplewicz, MD Dawn Crawford Child Mind Institute Events and Media Manager Max Rolison, 2011 Intern Ben Rimland, 2011 Intern Autism Science Foundation 28 West 39th Street, #502 New York, NY 10018 Phone: 212-391-3913 Fax: 212-391-3954

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