Organization for Autism Research Monthly E-Newsletter
November 2012
I N T H IS ISSUE Message……………………………………..1
How To……………………………………….7
OAR News………………………………….2
News from the RUN FOR AUTISM………….9
Research Review…………………………….6
Why I RUN………………………………….10
MESSAGE
by Mi chael Mal oney, Executi ve Di rector
What the Numbers Tell Us Next month, OAR will complete 10 years of service to the autism community. Paradoxical as it may sound, OAR has in many ways exceeded the expectations of its founders, while barely scratching the surface of its potential. As part of celebrating our first decade of service, we put together a booklet entitled The First Ten Years, which retraces our steps; displays the variety and depth of the research we have funded; and reviews the programs and resources we offer families, educators, service professionals, and persons with autism, all placed along the 10-year timeline. It was interesting — and in some cases surprising even to us — to see OAR’s cumulative body of work displayed.
One page told the story with numbers in a random but no less powerful sequence: 10 Years of OAR 7 Life Journey through Autism publications 8 Spanish resources available 103 Issues of The OARacle published 134 Studies funded 55 Scholarship winners 4,557 RUN FOR AUTISM participants 10,000 Copies of A Guide for Military Families distributed 50,000 Life Journey through Autism Guides distributed 75,000 YouTube Views: Understanding Asperger Syndrome: A Professor’s Guide $178,500 Scholarship funds awarded
$2,468,000
Total research grant funding
Onward to the Next 10 Years Of course, like election night voting tallies, these numbers are already changing. Most notably, we have now funded 152 research studies that total just over $2.8 million, and with the 29 scholarships awarded in 2012, we have now awarded $260,500 in scholarships to 84 students with autism attending college or postsecondary vocational-technical programs. Since OAR began, I’ve heard many parents say, “I wish OAR was around when my child was diagnosed” or “I wish I’d had this guide five years ago.” Beyond the satisfaction that such comments always bring, they tell us more than anything that we have set the right course and are doing right by the autism community — focusing on what is most important in the daily lives of those most impacted. Just as The First Ten Years and next month’s anniversary encapsulate OAR’s first decade, they also signal the start of the next ten years and beyond. We move forward today fully standing by our commitment to continue this good work, chart the right course, and do the right things. Thank you again for your part in OAR’s growth, success, and service to the autism community. The First Ten Years To receive a copy of The First Ten Years, contact OAR's Director, Program and Community Outreach, Ben Kaufman at bkaufman@researchautism.org
OAR NEWS OAR Recognized as a “Top Rated” Nonprofit – Again! For the second year in a row, GreatNonprofits, one of the major charity rating Web sites, has recognized OAR as a “Top Rated” health organization. Only 122 nonprofits received this distinction in 2011, and OAR is thankful for all of its friends, supporters, and community partners that provided overwhelmingly positive reviews of OAR during this year’s campaign. OAR is honored and deeply appreciative of such a positive response to our continued efforts to raise money, fund research, and change lives for people with autism and their families.
Here are some of the highlights from the 2012 reviews, which touch upon many of the important aspects of OAR programming: “As the parent of an individual with autism…I regularly recommend OAR’s resources to other caregivers, teachers, and therapists. It is wonderful to have an organization like OAR providing information we can trust!” “As a fundraiser for OAR, I have been impressed with the commitment shown by the organization to secure funding for this necessary research. The staff works tirelessly to encourage our fundraising activities and ensure we have successful events.” “At the time they funded our project… they understood that interventions need to focus on building strengths, empowerment, and resilience in those with autism rather than focusing on disease processes. These things make OAR unique, and I will always be grateful to OAR and the dedicated people who work there.” “OAR's focus on applied research ensures that all OAR's resources are evidence-based, and the staff's eagerness to contribute to the autism population guarantees that the materials are of high quality and relevance. OAR shines as a nonprofit in all that they do.” To read more reviews or write your own, visit the OAR page on the GreatNonprofits Web site. Not Red or Blue, This Campaign is for Everyone
Kicking Off Research 2014
As the presidential campaign ends, another has kicked off, one that depends not on endless tallies of red and blue states, but on the goodwill and big hearts of its supporters. As you will read elsewhere in this newsletter, OAR just committed $355,000 to 12 new research studies that will begin in January, and those grants take OAR beyond the $2.8 million mark in total research funded. Now the drive begins to raise funds for OAR’s next round of research studies, Research 2014, which will raise the total amount of funding to more than $3 million. OAR’s goal is to raise $100,000 for Research 2014 in November and December, which are the last months to make a donation for 2012 tax purposes. If you are considering a year-end charitable contribution and looking for research studies and programs that help to improve the daily lives of children and adults with autism and their families, look no further than OAR. Help close this 10th anniversary year and meet these important program goals by donating online via the Web site or by sending a check made payable to: OAR, 2000 North 14th Street, Suite 710, Arlington, VA 22201.
12 Research Studies Receive OAR Funding for 2013 At its annual meeting on October 26, OAR’s Board of Directors approved 10 new applied autism research studies and two research projects for funding in 2013. This additional $355,000 in research grants will bring the total funds awarded by OAR to more than $2.8 million since the first grant competition in January 2003. These research studies, which will be conducted by autism professionals from across the country, will examine timely issues that affect the autism community every day. “These were the studies that stood out the most in terms of design, methodology and potential to produce meaningful outcomes,” explains OAR Scientific Council Chairman Peter Gerhardt, Ed.D. “In fact, the findings from these studies are poised to provide practical tools and resources for use by parents, teachers, caregivers and medical professionals that would enhance current methods of diagnosis, education, treatment, and quality of life.”
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Grant Recipients Chosen from an initial group of 92 pre-proposals received in response to the Request for Proposals (RFP), each grant winner will receive up to $30,000 for his or her study. The recipients and research topics of this year’s grants are: Principal Investigator: Michelle Sondra Ballan, Ph.D., Institution: Columbia University School of Social Work Study: “Growing Up Aware: A Parent-Based Sexuality Intervention for Children with Autism Spectrum Disorders” Principal Investigator: Lucy Bilaver, Ph.D. Institution: Chapin Hall at the University of Chicago Study: “Identifying Disparities in Access to Treatment for Young Children with Autism” Principal Investigator: Jonathan Campbell, Ph.D. Institution: University of Kentucky Study: “Kit for Kids Evaluation Project: An Initial Evaluation of Evidence-Based Peer Educational Materials” Principal Investigator: Erinn Finke, Ph.D. Institution: The Pennsylvania State University Study: “Effects of Incidental Teaching on Expressive Language of School Age Children with ASD who use AAC” Principal Investigator: Rahul Khanna, Ph.D. Institution: University of Mississippi Study: “Health-Related Quality of Life and its Determinants in Adults with Autism Spectrum Disorders” Principal Investigator: Russell Lang, Ph.D. Institution: Texas State University Study: “Using Lag Schedules of Reinforcement to Teach Play Skills to Children with Autism Spectrum Disorders” Principal Investigator: Whitney A. Loring, Psy.D. Institution: Vanderbilt University Study: “Sleep Education Program for Adolescents With Autism Spectrum Disorders” Principal Investigator: Anna Petursdottir, Ph.D. Institution: Texas Christian University Study: “Increasing Variability of Verbal Initiations through the Responses of Conversation Partners” Principal Investigators: Joshua Plavnick, Ph.D., and Brooke Ingersoll, Ph.D. Institution: Michigan State University Study: “Enhancing Traditional Group Social Skill Instruction using Video-based Group Instruction Tactics” Principal Investigator: Oliver Wendt, Ph.D. Institution: Purdue University Study: “An Experimental Evaluation of Matrix Training to Teach Graphic Symbol Combinations in Severe Autism” OAR has posted the abstracts of these studies and the RFP for the 2013 Applied Research Competition on its Web site. For more information on the studies or for information on OAR’s research grants programs, contact Cody Waters at 703-243-9717 or cwaters@researchautism.org.
OAR Awards First Brophy Memorial Research Grant In September, OAR announced the establishment of the J. Ernest Brophy Memorial Fund for Autism at OAR, established by a gift of $100,000 from The Harry T. Mangurian, Jr. Foundation. Consistent with the terms of the gift and with the agreement of Brophy’s family, the first grant was to be to fund a new study selected from the 2012 Applied Research Competition winners. After presenting summaries of the studies approved for funding, OAR is pleased to announce that the family selected Creating a More Effective Path to Housing for People with ASD, a study proposed by John Maltby, M.S., director of the Community Support Network at the Westchester Institute for Human Development, as the first to receive a grant set up in their father’s name. Linda Sorg, Brophy’s daughter, explains why the family decided to fund this particular study: “My brother, Brian, was diagnosed with autism when he was 2 years old. He is now in his 40s. My parents struggled for some time to find appropriate housing for Brian and finally settled him into a group home in our home state of New York. Although
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Brian is doing well, he is over a thousand miles from all immediate family, all of whom live in Florida. Perhaps this study is the beginning of making decisions like these easier for individuals and families coping with the symptoms of autism.” Maltby’s objective is to research and detail how people with autism spectrum disorders (ASD) can obtain housing more efficiently through the use of a resource guide that comprehensively arrays housing information sources, entitlements, eligibilities and individualized living options. Developed in partnership with families, it will address the pressing need for affordable and accessible supportive housing for people with ASD. The guide will support informed decision making and self-determination/self-direction in housing. “It is a great honor for the Westchester Institute to be the recipient of the first Brophy Memorial Research grant,” Maltby says. “This funding will enable people with ASD and their families to create a new path to housing and longterm support, one that is not tied to institutional or segregated settings but which respects individuality and the desire of people with ASD to be genuinely part of their community.” The study’s ultimate goal is to establish how to facilitate housing for people with ASD, whether they will be able to do so at lower cost, and whether they can be empowered by increased knowledge of the process.
In addition to the guide, the expected outcomes of this project include: Validation of the guide application Creation of an active community of practice to create a body of accessible housing knowledge A means to individualized housing for several family participants in that community of practice A sustainable path for additional families to take in the future “Quality of life issues for adults with autism, and housing in particular, have been and remain priority areas of interest for OAR,” says OAR Scientific Council Chairman Peter Gerhardt, Ed.D. “This project stood out from a group of really outstanding studies when it came to meaningful outcomes and immediate practical value. The enthusiasm of the Scientific Council reviewers for one proposal has never been higher.” The study will begin in January 2013 and run through December 2013. OAR will periodically publish information on the project as it progresses and provide both a report and links to the online resource guide once the study is complete.
OAR Announces New Scholarship Program and Opens Application Period OAR is pleased to announce the opening of the application period for its 2013 scholarship programs on November 30, 2012. OAR’s Board of Directors recently approved the expansion of OAR’s financial assistance to young adults on the spectrum by establishing the Lisa Higgins Hussman Scholarship Program for students with more severe autism diagnoses pursuing post-secondary, undergraduate education, vocational-technical training, and certificate and life skills transition programs. OAR Board member and Scholarship Committee chair woman, Lisa Hussman, championed the initiative, which will be supported through a gift from the Lisa Higgins Hussman Foundation. An increasing number of young people on the spectrum are enrolling in cooperative education programs, aimed at teaching life skills during the critical transition period between secondary school and adulthood. With the addition of OAR’s new scholarship program, students participating in these programs will now be eligible to apply for financial assistance. “Even though the scholarship program included students pursuing vocational-technical training, we weren’t seeing many applications,” said Mike Maloney, OAR executive director. “By establishing this separate focus and expanding the program to include some of the emerging life skills programs, Lisa and OAR’s Board hope to support the postsecondary education of a wider cross-section of persons with autism.” OAR introduced the Schwallie Family Scholarship Program in 2008 to provide support to qualified individuals with autism spectrum diagnoses pursuing post-secondary, undergraduate education in the United States. Since then, 79 students from across the country have received $250,500 in scholarship funds. Supported initially through gifts from the family of OAR board member, Ed Schwallie, the scholarship fund has also received generous support from the Lisa Higgins Hussman Foundation in each of the last four years. The New Scholarship Plans As of this year, awards from the Schwallie Family Scholarship Program will go to persons who are on the higher
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functioning end of the spectrum or who have an Asperger Syndrome diagnosis. Students with more severe autism diagnoses will receive awards through the Lisa Higgins Hussman Scholarship Program.
OAR will provide one-time awards of $3,000 each for students attending: Four-year colleges or universities Two-year colleges/community colleges Vocational-technical schools Cooperative education and life skills/transition programs The application period will open November 30, 2012, and close April 26, 2013. To find out if you or someone you know qualifies, check out the scholarship eligibility criteria on OAR’s Web site. For any other questions about either of these scholarship programs, please contact Cody Waters, business manager, at 703-243-9717 or cwaters@researchautism.org.
Conference on the Road: 2013 and Beyond With the new year quickly approaching, OAR is planning its “Conference on the Road” program for 2013. Successfully implemented in 2011 through conference partnerships withAutism New Jersey and the Milestones Autism Organization in Cleveland, Ohio, it continued in 2012 with another well-received program at the Milestones conference. It utilizes a model in which OAR provides financial support and access to nationally recognized speakers for existing conferences, and is one of the primary vehicles for helping OAR meet its educational goals. “We see conferences as opportunities to build meaningful partnerships with other reputable organizations,” says Ben Kaufman, director, programs and community outreach. “We’re expanding access to evidence-based information and, at the same time, maintaining a pulse on the autism community so OAR can continue to develop the most relevant and responsive resources.” In an effort to have the greatest possible impact, OAR has decided going forward to focus on supporting both community-based conferences (whose participants are generally parents, educators, and service providers) and research conferences (whose participants are generally autism researchers). It important for OAR to achieve this balance between research and practice, as it continually strives to inform the dialogue between the two.
In evaluating potential conference partnership opportunities, OAR is looking for organizations that meet the following criteria: Are reputable 501(c)(3) organizations Have organizational goals that are consistent with OAR values Have successfully hosted a conference for 250 or more attendees for at least three years, with some exceptions Present an opportunity for OAR to add significant non-monetary value to the conference Express an interest in forging a multi-year partnership Have a strong presence nationally or within a specific geographic community Through workshops or other conference events, offer to highlight OAR-funded research Seeking Your Recommendations OAR has already begun identifying prospective conference partners, but is always open to recommendations from the readership of The OARacle or inquiries from interested organizations.. Where should OAR be heading in 2013 and beyond? Please contact Ben Kaufman, director, programs and community outreach, by phone at 703-243-9762 or by e-mail at bkaufman@researchautism.org with any feedback or questions.
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RESEARCH REVIEW Researchers Examine the Intersection of Autism and Health Care Anyone with a loved one on the spectrum knows that the disorder doesn’t just affect that specific person, but the entire family in many ways. But how can we measure that impact? In “Systematic review of disparities in health care for individuals with autism spectrum disorders in the United States,” two researchers at the University of Missouri sought to determine the relationship between autism and the health care system in terms of service utilization, total cost, and ability to access needed services. They analyzed the findings from peerreviewed journal articles in order to paint a more complete picture of the hardships families face. Here is a brief sample of their troubling findings: Regarding health care utilization, children with autism: Averaged 13 more annual outpatient visits than children in general, and nearly three times as many visits as children with other developmental disorders and special health needs Had more inpatient stays and longer lengths of stays than children with mental retardation Visited the emergency room 30 percent more than children without autism spectrum disorders (ASD) and were 3.5 times more likely to use medication Regarding health care expenditures, children with autism: Had significantly higher total health care costs (especially for outpatient visits) compared to children with asthma and diabetes, and three to six times higher costs than children without ASD Experienced a mean four-year health care expenditure increase of 20.4 percent with a large employer benefit plan Incurred between $724 and $1,946 in annual medication costs, seven to 15 times higher than those incurred by children without ASD or another developmental disorder; their parents were also more likely to report financial problems or needing additional income due to the child’s health concerns
Experienced coordinated care between a specialist and other providers only half as much as children with mental retardation These statistics have important implications for members of the autism community. They suggest that broader social change needs to occur in order to fully address the health and financial concerns that families affected by autism regularly. Parents need to anticipate regular interactions with health care providers and do everything possible to ensure that members of their child’s treatment team are in constant communication not only with them, but with each other as well. In that same vein, however, it is up to community health organizations and the entire industry to focus specific attention on educating families affected by autism, in order to help them navigate what is a complex and ever-changing system. On a policy level, lawmakers should consider ways to eliminate barriers to proper and affordable care for people with autism. Insurance mandates for interventions such as applied behavior analysis (ABA), as exemplified by a court case ruling in favor of military families, are one example of efforts to help relieve these health care burdens. The grim reality is that we still have a long way to go when it comes to helping families access the right (and most affordable) care for their loved ones with autism without having to jump through significant hoops. References Tregnago, M.K. & Cheak-Zamora, N.C. (2012). Systematic review of disparities in health care for individuals with autism spectrum disorders in the United States. Research in Autism Spectrum Disorders, 6(3), 1023-1031.
Regarding access to health care, children with autism: Were significantly more likely to experience referral problems, incomplete coverage, difficulty getting needed services, high out-of-pocket costs, difficulty scheduling appointments, and lack of skilled specialty doctors
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HOW TO By Melissa Archer
Suggestions for Dealing with Friends and Family
Making Winter Holidays Merry
Melissa Archer is a former English teacher, the wife of a police officer, and the mother of five daughters ranging in age from 11 to 35. She recently quit teaching to homeschool her daughter, Jasmynn, 11, who has autism. Our daughter, Jasmynn, 11, was diagnosed with autism at the age of 3 1/2. She has made a lot of progress since then, but she does not talk in a manner that others understand and there are many situations that are not easy for her (and us as her parents). Learning how to care for and support her has been an education for everyone in our family. One of the hardest times for us has been holidays. It’s not easy to help people who aren’t familiar with autism and its effects understand why Jasmynn behaves the way she does. She may open a gift and toss it aside immediately. She rarely stays at the dinner table for more than 10 minutes, and, no matter how special a holiday dinner may be for us, she will only eat certain foods. Some people, understandably, might see this behavior as rude. And, if Jasmynn were a typically developing child, it would be. But for her and many children with autism, this behavior is a way of coping with uncomfortable stimulation and an environment that is difficult for them to process and navigate.
a child with autism. And as parents, you may also find some holiday gatherings difficult. There are times when it can be very sad to be the parent of a child with autism, especially during the holidays, and it’s okay to acknowledge those feelings. We once went to a party where a two-year-old child would not stop talking. Her mom asked her to be quiet, and all I could think was how much I wished Jasmynn could talk. You can’t avoid those situations entirely, but spending holidays with families and friends who understand your situation, who can empathize, and are willing to accommodate your child will make the holidays better for everyone. Gift Giving Share your child’s gift list. People who only have experience with typically developing children may have no idea what to give your child. Jasmynn, for example, loves music, noise-making toys, and technology so we tell people that. It may be that a child has a few very favorite toys and might need to replace one of them. If the gift giver wonders why, explain how much your child loves the item and that replacements come in handy. Clothes are always useful, so those can be included on the list as well. We have also suggested that people purchase specific gifts from online catalogs. One of our favorites is Therapy Shoppe. Consider asking for gift cards. It’s more likely to take pressure off the gift givers to know they are giving something that will be appreciated. Jasmynn loves music for her iPod Nano, so we ask for iTunes gift cards she can use to download music.
Over the years, we have worked with our family and friends to educate them about autism and what we can all expect during the holidays. And we have worked with Jasmynn, too. These suggestions for making the holidays happy for everyone come from my husband’s and my experience as parents. Preparing Family and Friends Provide information about your child in advance. A great place to start is with your holiday cards. Include a page of tips about your child (and autism more generally) with your holiday cards so your guests will have a better idea of what to expect before they arrive. If you are going somewhere else, make sure the hosts get the handout in advance or you speak with them beforehand. I found and have used this letter, which can be modified with specific information about your child. Pick and choose the events your family will attend. Not every holiday event or activity will work for
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Make sure the hosts and guests understand that your child may not be able to sit all the way through the meal. A meal can be a sensory nightmare for a child with autism – the noise of flatware on plates, several conversations going on, and all the food smells wafting through the air. We expect Jasmynn to sit with us for grace and to eat. She then uses sign language to ask to be excused, and we allow her to go to a quieter location with less people. Let family/friends know that your child may not be able to stay while gifts are being unwrapped. As with the holiday dinner, tradition may need to be set aside or modified when a child with autism is involved. Once again, the number of people and the noise of gifts being unwrapped may be too much for him or her to handle.
Jasmynn Archer enjoys a visit with Santa.
Holiday Events Host events at your house, if you can. It can be hard to take a child with autism somewhere else for any length of time. It can be even more difficult during the holidays with all the lights, music, food, and activities. When we host something at home, Jasmynn has her room to go to if she needs quiet time.
Our family and friends have been very accommodating to Jasmynn and to us, which has made the holidays much more pleasant for everyone. It’s good to remember that you do have control over what your family does during the holidays. Making the holidays happy ones may take some unconventional ideas, but who cares? It’s worth any additional effort that may be required. Do what you need to do to make the holidays enjoyable, meaningful, and peaceful for everyone in your family.
At someone else’s house, ask if there is a quiet space for your child (and you, if needed). Jasmynn is perfectly happy if she can put on headphones, use either her iPad or iPod and be in a room by herself. If there’s a piece of exercise equipment—a stationary bike, elliptical machine, or treadmill—she can use, we have found that to be helpful for her, too. Many children with autism have very specific food preferences. Jasmynn, for example, will only eat crunchy food. We always bring a meal we know she can eat with us. If this applies to your child, explain that to your hosts when you speak beforehand, and let them know this is true for many children with autism who have sensitive palates and may not tolerate mashed potatoes or pumpkin pie. Ask your family and friends to be understanding about clothes. Jasmynn will only wear clothes that are soft and comfortable, so we do not force her to wear “dress up” clothes. When she was a flower girl for her sister’s wedding, she wore sneakers. People tend to be understanding when they know why she prefers the kind of clothes she does.
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NEWS FOR RUN FOR AUTISM
OAR Celebrates 10-Year Partnership with the Marine Corps Marathon Ten teams. Ten years. One great partnership. When the RUN FOR AUTISM team crossed the finish lines of the Marine Corps Marathon (MCM) and 10K on October 28, it symbolized 10 years of success of the partnership between OAR and the Marine Corps Marathon When the Marine Corps Marathon first invited OAR into its Charity Program in 2003, OAR Executive Director Mike Maloney envisioned what the race could mean to OAR. “Above all,” he said then, “a marathon demands courage, endurance, will, and determination, qualities that parents in the autism community exhibit each day. Finishing one takes a lot of hard and often painful strides. I can think of no other event that matches the persevering spirit of the community or so aptly serves as a metaphor for a family's life challenge with autism." Since its inception, the RUN FOR AUTISM has become so much more than its initial 100-member Marine Corps Marathon and 5K team (now a 10K). This year, several MCM RUN team members lined up at the start line having brushed shoulders with other OAR runners just three weeks prior at the Chicago Marathon. Other team members received their MCM and OAR finisher’s medals knowing they were soon to be back on the race course in November with OAR’s Philadelphia Marathon team. The RUN FOR AUTISM has become not just a collection of representatives from the autism community but a community and family in and of itself. Dedicated to Something Bigger This year’s RUN FOR AUTISM —Washington, DC team was comprised of 161 runners raising over $128,000 to date. The team joined 23,515 runners on Route 110 in Arlington, Va., hitting the pavement with the boom of a Howitzer cannon. The pleasant 52-degree temperatures did not translate to easy race conditions though— marathoners and 10Kers alike were trying to outrace Hurricane Sandy’s looming approach. With a little extra effort against heavy wind gusts, the OAR runners successfully made it across the finish line and back to camp at the race’s Charity Street finish festival. Among OAR’s top marathon fundraisers were the members of Team Jack: Adam Siegel, his sister-in-law Lisa Siegel, and his friend Eric Sinor. Siegel’s marathon journey started four years ago, when a friend voiced concern over his weight. “I went home and took a long look at myself in the mirror, and I did not like what I saw. I was 46, overweight (285 pounds), a cigarette smoker, and I had highblood pressure. It was time for a change.” Siegel started walking, watching what he ate, and eventually running. To celebrate his 50th birthday this year, he put his efforts to the test by registering for the MCM. But he wasn’t doing this just to run; he wanted to dedicate these miles to something bigger. “I have watched my brother Jonathan’s and my sister-in-law Lisa's selfless dedication to their son Jack [who was diagnosed with autism at age 3],” Siegel says. “Parents of autistic children never get a day off… their commitment to Jack is inspiring.They are always looking for answers, treatments, and anything they can do to help improve Jack's condition. They are the real heroes, along with all parents of children with autism. My race is dedicated to them.” With Siegel leading the way, his sister-in-law and Sinor soon jumped on board with the marathon and fundraising efforts, and Team Jack came out of the Marine Corps Marathon weekend with an incredible fundraising total of $13,259! The top 10K fundraisers were Team Running for Andrew, lead by returning OAR runner Amanda Choutka. Together, Choutka and 18 generous and supportive friends (a mix of both new and returning OAR runners) banded together to tackle the 6.2 mile race and raise over $7,000. This race has become a tradition for Choutka, who has run the 10K with OAR since 2010 in honor of her brother Andrew, a 22-year old adult on the autism spectrum. Team Running for Andrew is just warming up though—with their MCM 10K medals around their necks, eight of the team members tackled the Philadelphia Half Marathon on November 18. We congratulate Choutka, Matt Croke, Meghan Klasic, Andrew Leach, Emily Livingston, Colin McDonough, Chris Neary, and Lexie Waite for their accomplishments!
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Join OAR in 2013 Interested in joining the Washington, DC RUN FOR AUTISM team at an upcoming race? OAR is currently recruiting new team members to our Rock ‘n’ Roll USA team for a marathon or half marathon on Saturday, March 16. Or sign up with OAR for the 2013 Marine Corps Marathon and 10K. OAR will be offering half-priced early bird registration in February and will have entries available after the general race entries are sold out, so put your name on our 2013 roster now to stay up-to-date on team information! Don’t delay -- race entries to the 2012 event sold out in less than three hours. Contact Sean Flynn at sflynn@researchautism.org for information about registering for either race and supporting OAR’s upcoming and ongoing projects and research.
WHY I RUN Take That, Hurricane Sandy!
N.J. Runner Takes on His Own Marathon to Fulfill His Commitment Dave Lepak has his priorities straight. Registered to run the Marine Corps Marathon as part of OAR’s RUN FOR AUTISM on October 28, he decided to stay home with his family in Metuchen, N.J., when he heard about Hurricane Sandy’s imminent arrival. End of story, right? This husband and father of three made a hard but good decision. Not quite, because Lepak wasn’t going to call it quits. He had signed up to run in honor of his son, Henry, 6, and he had already raised more than $3,000 for OAR. “The hardest part was that in the course of fundraising I was promising to run the MCM in return for support and I thought that by not going, I would be letting everyone down,” Lepak says. Then I realized that it wasn’t about running the MCM, it was about running. With that in mind, I decided I’d run in my own home town rather than risk getting stuck in DC.” Having trained in and around Metuchen, Lepak decided he would run the marathon by himself, setting up a course based on his training runs. “During my training I developed a number of training loops – 3.5 miles, 5.25 miles, 9 miles, etc. So I decided to run the 5.25-mile loop five times. “ He finished in 4 hours and 15 minutes and raised a total of $3,260. Having run the 2010 MCM, he was familiar with OAR. “I stumbled upon OAR when I was first searching the Internet trying to learn everything I could about autism. There was a wide array of different types of sites with blogs and forums and organizations such as OAR. When I was looking at OAR I thought it was something that I could get behind.” To date, his fundraising efforts have raised more than $7,000 for OAR. Lepak, who is a professor, has seen what the right therapy and support can do for kids like his son. “Henry is an amazing kid,” he notes. “He is really coming along this year in kindergarten. I think his advances are in part due to the great support system we have in our school but also through our additional therapies. Seeing how hard his team works with him, and the progress of those sessions over the past three years, that is one of the major reasons I run for OAR – to help with research to improve development for all these kids.”
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