In response to the Autism Speaks/Pennsylvania Autism Insurance Bill fiasco - the following email was sent from PA Speaker O’Brien.

AN OPEN LETTER TO AUTISM SPEAKS FROM SPEAKER O’BRIEN
July 12, 2008

Mr. Robert C. Wright
Co-Founder, Autism Speaks
2 Park Avenue
11th Floor
New York, NY 10016

Dear Bob:

We have a collective mission to create a world in which persons with autism have every opportunity to participate fully in society, to live meaningful and independent lives, to receive the respect they deserve and to have the supports necessary for them to reach the innate potential we know them to have. It’s never been an easy mission, and it doesn’t often permit us the luxury of a pause in the action to reflect on success.
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The following action alert was sent out by the Autism Speaks Arizona office. If you know of a family in Arizona who is receiving services through the Arizona Department of Developmental Disabilities (DDD) please point them to Autism News Direct so that they may take action to secure funding for their children.

The state budget (bill 2620) that was passed into law for fiscal year 2008 lacks protection against cuts to DDD funding which can jeopardize funding to autism treatments. What this means is that funds that are allocated to the DDD can be used to fill in deficits in other areas of the state’s budget. However, we know that early intensive intervention is essential for children with autism and since the DDD is the major funding source for such treatment, budget cuts of this nature would be devastating to the autism community. On behalf of the many children and families who are affected by autism, we ask that you please contact your legislators and urge them to protect DDD funding.
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Don’t miss the opportunity to bid on rare experiences and one-of-a-kind items in the Autism Speaks online auction. Items range from walk-on roles in top-billed movies, to VIP tickets to the ‘09 Super Bowl, to exclusive autographed Autism Speaks items and top country club golf foursomes.

Bidding closes Friday, March 28 at 7:00 p.m. ET.

Visit the auction site and BID NOW!
A few sample auction items:
“While You Were In” Room Makeover from Your Favorite TLC Stars, Evan Farmer and Jason Cameron from “While You Were Out!”
 
Walk-on Role to “Duplicity” Starring Julia Roberts, Clive Owen and Paul Giamatti!
 
2 VIP Tickets to the 2009 Tampa Super Bowl
Visit the site to see them all!

Autism Speaks Unveils 100 Day Kit, A Unique Resource for Parents of Children Newly Diagnosed with Autism
Providing Families with Connections to Resources and Support Services in Their Communities

NEW YORK, NY (February 29, 2008) — Autism Speaks, the nation’s largest autism advocacy organization, today announced the launch of its 100 Day Kit, a personalized resource to assist families in getting through the critical time following an autism diagnosis. In addition to receiving the contents of the kit, which includes information about services and service providers in a family’s community, those who register will also be connected with a regional Autism Speaks Autism Response Team member who can provide further insight and guidance.

A personalized version of the 100 Day Kit is available by visiting www.autismspeaks.org/community/family_services/100_day_kit.php, where parents of a newly diagnosed child will be asked to fill out a short survey. In response, an Autism Response Team coordinator will contact the family to get additional information so that the 100 Day Kit can be tailored to include resources specific to their child’s age and location. The family will receive a binder with pertinent information, as well as contact information for an Autism Response Team coordinator in their region who has been trained specifically to answer questions they may have.

The turn-around time for a new kit will be approximately one week from the date of the initial request. Members of the Autism Response Team will follow up with families four months after they receive the 100 Day Kit to see how they are doing, answer any questions they may have, and solicit their feedback. Families may also download the text of the kit without registering – and without personalization – and use Autism Speaks’ Family Services Resource Guide to access local resource information.

The 100 Day Kit includes basic information about autism and dealing with the news of a diagnosis. The personalized kit lists local service providers, support groups, recreational activities, sources of legal information, conferences, local autism and disability organizations and information about the local chapter of Autism Speaks. It provides insight into getting services for a newly diagnosed child and explains various available treatment options. A week-by-week action plan helps walk a family through the steps it needs to take to ensure that it is on the right track. The kit also includes a glossary of terms associated with autism, as well as a safety plan and a list of recommended books and informational web sites.

“When a child is diagnosed with autism, his or her parents are often left feeling overwhelmed and confused about what to do next and where to turn for help,” said Peter Bell, Autism Speaks Executive Vice President for Programs and Services. “This kit will be a valuable tool for these families and will help make the first few weeks and months after diagnosis a little less daunting.”

“Parents need to know that they are not alone,” said Lisa Goring, Autism Speaks Director of Family Services. “The 100 Day Kit and the Autism Response Team will help families get informed, get organized and get connected to important resources and support services in their community.”

The 100 Day Kit was created by the Autism Speaks Family Services staff in conjunction with a professional advisory committee comprised of twelve autism professionals, a parent advisory committee that included parents from across the country, and members of the Autism Speaks Family Services Committee.

ABOUT AUTISM
Autism is a complex brain disorder that inhibits a person’s ability to communicate and develop social relationships, and is often accompanied by extreme behavioral challenges. Autism spectrum disorders are diagnosed in one in 150 children in the United States, affecting four times as many boys as girls. The diagnosis of autism has increased tenfold in the last decade. The Centers for Disease Control and Prevention have called autism a national public health crisis whose cause and cure remain unknown.

ABOUT AUTISM SPEAKS
Autism Speaks is dedicated to increasing awareness of autism spectrum disorders, to funding research into the causes, prevention and treatments for autism, and to advocating for the needs of individuals with autism and their families. It was founded in February 2005 by Suzanne and Bob Wright, the grandparents of a child with autism. Bob Wright is Vice Chairman, General Electric, and served as chief executive officer of NBC for more than twenty years. To learn more about Autism Speaks, please visit http://www.autismspeaks.org/.

A February 8, 2008 press release by Vanderbilt University confirms that melatonin can help individuals with an autism spectrum disorder that also have problems with sleep.  Melatonin is a natural supplement; it is believed that people on the autism spectrum are deficient in melatonin.  Supplementing melatonin is thought to induce a more normal and restful sleep pattern.

The Vanderbilt study had 107 participants; 85% of the participants reported improved sleep or completely resolved sleep issues.  According to the news release:

“Although prospective trials will be needed to determine if melatonin is an effective sleep aid in this population, this study does support that it may be a reasonable treatment option in these children when administered under the care of a physician and combined with behavioral therapies for sleep.”

Autism Speaks and the Dana Foundation have pledged $100,000 towards a research study looking at the melatonin solution further. 

Source:  Vanderbilt News Service

Autism Awareness Month is rapidly approaching (April); Toys R’Us has published a news release announcing its commitment to continue supporting Autism Speaks in 2008.  Toys R’Us and the Toys R’Us Children’s Fund have awarded a $250,000 grant to Autism Speaks.  In addition, the stores located throughout the United States will sponsor dozens of the Autism Speaks fundraising walks and allow customers to donate to Autism Speaks through in-store fundraising efforts.  The 2007 in-store fundraising brought in more than $1 million to benefit Autism Speaks.

For more information read the entire Toys R’Us/Autism Speaks press release.