Archive

Posts Tagged ‘Awareness’

The Month in Review: Autism Speaks October 2011 Impact

November 3, 2011 5 comments

Last month we tried an experiment… we attempted to recap the most important, relevant things going on around Autism Speaks to give you some insight into the breadth and depth of our organization; and to solicit your feedback. Thank you for your incredible responses and questions!

One of the more common questions we get (similar to the one that Kristine on Facebook posted) is, “What can Autism Speaks do to help my family today?” It’s a great question!  We understand that families are struggling and are looking for help and information. Using an “evidence-based science” approach, we seek to deliver useful information, tools, and resources for families that they can immediately use, such as the 100 day and transition kits. Programs such as Advancing Futures for Adults with Autism provide resources across the lifespan. Not only do we provide a wide collection of tools, we also staff the Autism Response Team which is available to answer your questions via email, phone and online chat! They can be reached via email at familyservices@autismspeaks.org or 1-888-AUTISM2. Kristine, that’s how we help families today, while we continue to increase awareness about autism, advocate for more funding for research and services, and fund innovative research projects that are developing improved treatments and services for people with autism.

If you know of other things that might be helpful to another family, please SHARE them by leaving a comment! We want to know what you think is important.

Science

Illustration by Gracia Lam

Illustration by Gracia Lam

  • We’ve got an MD on staff!  This month, we hired Joe Horrigan, MD to head up Autism Speaks’ medical research.  His charge is to spearhead the development of new medicines and other treatments that can help people with autism communicate and learn better and address some of the medical conditions associated with autism, such as GI and sleep problems.  Welcome, Dr. Horrigan!  Look for him on our Science blog.
  • Leading the Way Autism Speaks is leading the way in developing an enhanced Autism Tissue Bank that will accelerate the discovery of the causes and new treatments for autism.   Autism Speaks Autism Tissue Program (ATP) featured prominently in a feature story in the prestigious science journal, Nature, on the tissue bank shortage and how a small handful of organizations such as Autism Speaks are working to fill the void and speed research that can help individuals and families struggling with neurodevelopmental disorders such as autism.
  • World’s Largest Genome Library will be created by Autism Speaks and the Beijing Genome Institute.  Autism Speaks and  announced an agreement to create the world’s largest library of sequenced genomes from persons with autism spectrum disorders (ASDs). Multiple stories have appeared in the U.S. and China. The journal Nature interviewed Andy Shih on the agreement, as did Genome Web Clinical Sequencing.
  • Got Hours? Geri Dawson held her first “Office Hours with the Chief Science Officer” which featured guest host and renowned geneticist Steve Scherer, PhD, who addressed the question: What do the new findings in genetics mean for my family?  Dr. Dawson will be holding monthly office hours and the next one will be on the topic of new approaches to early intervention, scheduled for the first week of December Read the transcript.

Want to dig into Autism Speaks science even further? Visit the science section of our website, and read the latest blog posts from the science department.

Family Services

  • Employment October is National Disability Employment Awareness Month. We highlighted the Jay Nolan Community Services Employment Tool Kit that was funded by one of our Family Services Community Grants. Other employment-related activities included question of the week on Facebook and live chats with:
  • New Toolkit Alert New Tool Kit Alert – in an effort to provide information and encouragement to all people with individuals with autism in their lives, Autism Speaks has several new Family Support Tool Kits. The purpose of each kit is to help teach family members and friends more about autism and provide resources and supports to each group. New kits include:
    • Parents
    • Siblings
    • Grandparents
    • Friends

Stay up to date with the latest from Family Services in a variety of ways! Subscribe to our monthly “community connections” newsletter, Bookmark the Family Services page on our website or read Family Services related blog posts.

Advocacy

Signing in NY

Signing in NY

  • New York Autism Speaks Co-founders Suzanne and Bob Wright stood alongside Gov. Andrew Cuomo as he signed legislation making New York the 29th state to enact an autism insurance reform law.  The New York law is one of the strongest in the nation, setting no caps on age or visits for behavioral treatments. Governor Cuomo credited Autism Speaks for its leadership role in winning enactment of the legislation.
  • California We (all of us) did it! A major campaign was launched to ask Governor Brown to sign SB.946, the autism insurance reform bill, into law. Because of California’s significance as the most populous state, we asked advocates in the other 49 states to participate by recruiting their friends and family in California to participate. Thousands of emails were sent into Governor Brown and over 1,000 people left comments on his Facebook page as well. Every possible method to get through to him was deployed, including a successful political cartoon campaign. The cartoon was printed as 750 posters and distributed at the Oct. 9 Sacramento Walk, the day the bill was signed by Governor Brown making California the 28th state to enact reform.
  • Michigan Our attention has now turned to Michigan where we are urging the state’s legislative leadership to move a pair of autism insurance reform bills before the year’s end. We need your help! If you are in Michigan, or know someone who is please text “AVotes” to 30644 and we’ll alert you when we need your help!
  • Autism Law Summit The 6th Annual Autism Law Summit attracted 100 activists from 33 states to Salt Lake City. The event highlights efforts to obtain insurance benefits for necessary autism treatments through legislation, litigation, and encouraging employers with self-funded plans to include the benefit for their employees. During the summit, we celebrated Arkansas, California, Rhode Island, Virginia and West Virginia for enacting reform bills during 2011.

Want to get more involved with Autism Speaks advocacy efforts? Sign up to become an advocate on www.autismvotes.org or text “AVotes” to 30644 to be added to our mobile alert list.

Awareness

60 Minutes Apps for Autism

60 Minutes Apps for Autism: image from CBS

  • Apps for Autism The producers of 60 Minutes consulted extensively with Chief Science Officer Geri Dawson and VP of Scientific Affairs Andy Shih in preparing a special segment on autism applications for communication, which aired Sunday, October 23rd. The full show can be found on the CBS News website.
  • Parents Magazine The October 2011 issue of Parent Magazine featured an interview with Autism Speaks Chief Science Officer Geri Dawson in an article entitled “Understanding Autism.” The piece encouraged parents to pursue an early diagnosis of autism in their children and highlighted the beneficial outcomes that early intervention and treatment can bring to a child diagnosed with autism.  To read an excerpt from the article, click here: http://www.parents.com/toddlers-preschoolers/health/autism/autism-diagnosis/
  • Extreme Makeover: Home Edition On Friday, October 28, ABC “Extreme Makeover: Home Edition” aired an episode featuring the McPhails, an Oregon family with two sons affected by autism. In addition to tackling home improvements, the EMHE team worked with Autism Speaks to rally the local community to raise autism awareness in honor of the family. To watch the episode click here: http://abc.go.com/watch/extreme-makeover-home-edition/SH559052/VD55150625/mcphail-family-part-2

Want to stay up to date on our awareness efforts? Visit the blog for the latest info… that page is also “RSS” enabled so you can add it to your newsreader!

The Month in Review: Autism Speaks September 2011 Impact

October 4, 2011 6 comments

One of the big challenges we have as an organization is showing the impact we have  across the four pillars of our mission: Science, Family Services, Advocacy and Awareness. In fact, so much is going on that we are going to aggregate some of the most important happenings once a month.

If you know of things going on that we aren’t including, please SHARE them by leaving a comment! We want to know what you think is important.

Science

Autism Speaks

  • Science Pressents… We presented ATN-supported research on autism and attention deficit and hyperactivity disorder (ADHD) at the annual conference of The Society for Developmental and Behavioral Pediatrics. The study’s findings – that ADHD symptoms ADHD Symptoms in children with autism are common, problematic and likely undertreated – made national headlines.
  • European Approval On September 13, we received final approval of the European Union Autism Innovative Medicine Initiative (EU-AIMS, a historic Autism Speaks-European Union collaboration to develop new medicines for the treatment of autism. The largest public private partnership of its kind in Europe, EU-AIMS will allow Autism Speaks to establish an international biorepository for research and to integrate our wealth of clinical information with global databases.

Want to dig into Autism Speaks science even further? Visit the science section of our website, and read the latest blog posts from the science department.

Family Services

Download the new Grandparents tool kit from Autism Speaks

Download the new Grandparents tool kit from Autism Speaks

  • Just for Grandparents We launched our Family Support Tool Kit for Grandparents on September 15.  The kit includes topics like:
    • Reaction to the Diagnosis
    • Your role as a Grandparent
    • Support for Your Grandchild
    • Support for Your Family
    • Taking Care of Yourself
    • FAQs from Grandparents
    • Grandparent Stories
  • New Health and Wellness toolkit launched On September 29 we launched a new on-line tool kit called Health and Wellness. This new content is featured on the Autism Speaks website and includes the benefits of exercise for people with autism as well as information about nutrition and sleep.  The photographs used in the slide show were submitted from our Facebook community members! Send us more!!
  • Family Services Committee Meeting On September 15 and 16 the Family Services Committee met to review the top scoring applications for the Family Services Community Grants.  The committee looked for applications that increase the services for people with autism, as well as to expand the field of service providers.  Other factors considered during the review process were innovation and creativity, ability to address the needs of the underserved, replicability, clarity of the proposal, qualifications of the organization, well documented budget and sustainability. As a result of this meeting recommendations will be made to the Autism Speaks board of directors for approval during the December board meeting.

Stay up to date with the latest from Family Services in a variety of ways! Subscribe to our monthly “community connections” newsletter, Bookmark the Family Services page on our website or read Family Services related blog posts.

Advocacy

The White House

The White House

  • Autism Speaks joined with California Senate President Pro-Tem Darrell Steinberg at a series of rallies urging Gov. Jerry Brown to sign an autism insurance reform bill into law. The effort received a boost in late September when the Los Angeles Times urged the Governor to sign the bill in an editorial
  • Michigan has become the primary target for autism insurance reform as a new legislative campaign gears up to enact a bill into law

Want to get more involved with Autism Speaks advocacy efforts? Sign up to become an advocate on www.autismvotes.org or text “AVotes” to 30644 to be added to our mobile alert list.

Awareness

Autism Speaks World Focus

Autism Speaks World Focus

  • Hacking Autism As part of a collaboration on the “Hacking Autism” initiative with HP and the Flutie Foundation, Autism Speaks participated in the World Maker Faire at the New York Hall of Science on September 17 and 18. “Hacking Autism” was launched in June 2011 to seek new ideas for technology applications beneficial to people with autism. At Maker Faire, seven app ideas were announced as finalists to be built by volunteer software developers at the HP Hackathon in October. In addition announcing the “Hacking Autism” finalists, Autism Speaks used the popular tech convention as a platform to disseminate information about its mission and raise autism awareness. Catch up by reading our blog post on Collaboration, technology and making things.
  • Parents Magazine “Wishes” Autism Speaks worked with Parents to develop a “wish” for autism that we would like to see come through within the next decade that will be featured in the October issue of the magazine. On September 15, Autism Speaks and Parents both posted the wish – that every child is screened early for autism – on their social networking sites and asked families to share their wish for autism.
  • World Focus on Autism For the fourth year in a row Autism Speaks brought together more than 20 first spouses and esteemed dignitaries, including 15 ministers of health, from more than 30 countries around the globe for the Fourth Annual World Focus on Autism. The event was held on September 20at The McCarton School in New York City. We encouraged those in attendance to support our international efforts, including Autism Speaks’ Light It Up Blue campaign in celebration of World Autism Awareness Day, and our Global Autism Public Health (GAPH) initiative. This annual breakfast event, supported by Mrs. Ban Soon-taek, wife of United Nations Secretary-General Ban Ki-moon, is part of Autism Speaks’ ongoing effort to raise global awareness and share best practices for countries, communities and families struggling with autism. See an article highlighting the event published in the Wall Street Journal here.

Want to stay up to date on our awareness efforts? Visit the blog for the latest info… that page is also “RSS” enabled so you can add it to your newsreader!

Raising Autism Awareness on the Fourth of July

July 11, 2011 4 comments

This post is by Sarah Hamilton

After the Chicago Walk Now for Autism Speaks, our family and friends were so revved up to do something more that we came up with the idea to raise autism awareness in our local community – South Elgin, Ill. – and decided to walk in the 4th of July parade.  As we brainstormed, with the help of Autism Speaks, we came up with the idea for the float.  We liked the big puzzle pieces that were at the walk and thought that would be perfect for a float.  We all wore our “Cole’s Crew” shirts to the parade because this year, our t-shirts just happened to feature red and blue (very patriotic!).

The night before the parade we started working on the float and put the finishing touches on it as we were lined up to start the parade.  Everyone was so excited!  My son Cole, who is autistic and who I thought wouldn’t like this kind of thing, was really into it!  He liked riding in the back of the truck and though he didn’t say anything during the parade, later that day he told me he had fun!

During the parade, we heard many people commenting, “Thank you for doing this” or “my cousin/sister/brother, etc. is autistic” or “it is so good to see something like this”.  When our float was being announced during the parade, many people stood up for us and clapped or cheered (although many were waving and cheering along the route as well).  Some people looked like they were wondering what our float was about, and I hope those are the people who went home and looked up Autism Speaks!

We ran out of goodies to give out to the crowds lining the street and we were all tired, but it was such a great day and such a great way to raise awareness!  After the parade we got many compliments on the float – some people even said it was the best in the whole parade.  All the family and friends that walked with us have already posed the question of doing this again next year…………

Definitely a success!

This slideshow requires JavaScript.

AS2YP Winter Gala Raises $32,000 and Counting

February 4, 2011 1 comment

Autism Speaks to Young Professionals (AS2YP) is the budding younger-generation oriented event series that began in New York City in 2009. To-date AS2YP New York City has hosted four fundraising events- the most recent of which took place on February 3rd, at trendy NYC hotspot Avenue – and has also seen a sister chapter start up in Chicago (the Chicago chapter had their first event on January 19th), with chapters in the works in both DC and LA.

The event on February 3 at Avenue was pretty much AS2YP in a nutshell. The event sold out a week in advance- par for the course at this point, with three sold out events under our belt – and was attended by 300 New York City area young professionals who sipped and danced the night away in a venue reminiscent of a 1920’s speakeasy (think Boardwalk Empire set). The evening was sponsored by RBS for the second year in a row, and featured beverages from Brooklyn Brewery, Crop Organic Vodka, DonQ Rum, Farmer’s Organic Gin, Given Tequila Liqueur, Magner’s Irish Cider and Tito’s Handmade Vodka. AS2YP’s DJ of choice, Caleb Loftus, alternated between old school tunes and new hits, and kept everyone’s head bobbing with an occasional impressive move thrown in on the dance floor.

Midway through the evening, event chairs Amanda Niederauer and Danny Ryan spoke about what AS2YP means to them. As the sister and father of Liam and Jonathan, both of whom are on the autism spectrum, they know better than anyone how important it is that this younger generation of Autism Speaks supporters get behind the cause as early as possible. And with $32,000 raised (and counting) we think that we have made a pretty good start.

For more information on AS2YP (and to see pictures from last night’s event at Avenue) please visit our Facebook page: www.facebook.com/as2yp.

 

Photo by Josh Wong, Guestofaguest.com

Check out additional photos and coverage from this event at Guest of a Guest

Artists for Autism

January 19, 2011 5 comments

‘Artists for Autism’ is a fundraiser created by Sophie to benefit Autism Speaks in honor of her cousin Jimmy. Here is the letter she sent to her school.

Dear Family, Friends, students, teachers, and parents,

My name is Sophie, and I am an (almost) 10 year old fourth grader.

I have a cousin named Jimmy.  Jimmy is ten years old, turning eleven on February 17, 2011. Jimmy has a disorder called autism, which is a disorder of the brain that makes it hard to learn, communicate, and socialize. Since Jimmy is my cousin, he and autism are very important to me, and I have come up with a project that will hopefully help Jimmy and other people with autism.

I am going to hold an auction to raise money to find a cure for autism. At the auction, I will auction off artwork, with all of the money we make donated to Autism Speaks. You can learn more about Autism Speaks at www.autismspeaks.org.

And that leads to your job.

You, as an optional task, can make art that we will auction off.  You can make any type of drawing or painting you want. The auction will take place on the following date:

Date: Saturday February 12, 2011 (My 10th Birthday!)

Time: 3:30 PM-5:30 PM

Place: The Jane Lawton Center (formerly the Leland Center), 4301 Willow Lane, Chevy Chase, MD

Room: The Social Hall

If you do plan on participating please let us know by January 31st. You can do so by sending an e-mail to my dad, Matt, at mslater85@verizon.net.  Please let us know how many people will be making art.

When you make your art, please submit it with an index card that includes:

  • You’re name
  • Age
  • A title
  • A brief description of the art

Since we are hoping to have a lot of people participate please only submit one piece of art per person. We also ask that you frame the art or put it on a canvas; that way it looks very nice for the auction.

At the auction we will also have face painting, refreshments, a drawing table, and a special performance by Peter McCory, the one-man band.

Please respond to this email if you are going to donate art; we will then let you know the next steps.  Be sure to spread the word; the more art, the more money for Autism Speaks! And don’t forget to invite friends and family to do the bidding!

Thank you for any support you give; whether it’s making art or coming to the auction, we and Autism Speaks will appreciate it all.

Thanks!

Sophie

Is It Okay to Lose Your Cool?

November 11, 2010 10 comments

Tuesday’s Parenthood Episode explored a very real situation that many people in our community face to some degree or another. We would like to applaud Jason Katims and the cast for giving such an honest depiction of a real-life situation.

Here is the synopsis: Max, Adam and Zeek hop in the express checkout line at the supermarket. When Max notices the man in front of them has seven items over the allotted amount for the express line, he starts removing items from the man’s cart. The man gets irritated with Max and then Adam. Adam tries to manage the situation, asking Zeek to take Max back to the chip aisle to grab a few more bags while he talks to the man in line. When they walk away, Adam asks the man what his problem is. The man responds by telling Adam he’s sorry for him because his kid is clearly a retard. Without a second thought, Adam punches the guy in the face, knocking him straight to the ground. Adam, Zeek and Max return home with the groceries. Kristina can tell something’s wrong, but Adam says it’s nothing.

We want to hear from you. What do you make of this episode? Have you or someone you know, been in a similar situation? Please share your thoughts and stories.

New York City Honors Autism Speaks with Advocacy Award

August 11, 2010 1 comment

From left, Matthew Sapolin, Commissioner to the Mayor’s Office for People with Disabilities, New York Mayor Michael R. Bloomberg and Autism Speaks President Mark Roithmayr

On Tuesday, August 10, 2010, New York City Mayor Michael R. Bloomberg and Mayor’s Office for People with Disabilities Commissioner Matthew Sapolin hosted a reception at Gracie Mansion to celebrate the 20th Anniversary of the Americans with Disabilities Act. At the reception, Mayor Bloomberg presented Autism Speaks with the Frieda Zames Advocacy Award, given to an individual or organization whose tireless efforts for greater accessibility are a fitting tribute to the late Frieda Zames.  Autism Speaks President Mark Roithmayr, who accepted the award on behalf of the organization said, “We are sincerely grateful for Mayor Bloomberg’s commitment to advancing the needs, rights and abilities of our community and are very honored to receive the Advocacy Award on behalf of all of the families and individuals we serve in the autism community.”

Also honored at the reception were Bank of America, the American Museum of Natural History, The New York City Independent Living Centers, and the The AbleGamers Foundation.

Follow

Get every new post delivered to your Inbox.

Join 1,056 other followers

%d bloggers like this: