Wednesday, October 9, 2013

The Infant Sibling Study: A Family's Experience

The Mays participating in IBIS

Nicole L. May
Parent

My name is Nicole L. May. Our family recently took part in the Infant Sibling Study (IBIS) at the Center for Autism Research (CAR) at The Children’s Hospital of Philadelphia (CHOP). We found out about IBIS when one of our other children was enrolled in a different study at CAR. IBIS enrolls infant siblings of children with Autism Spectrum Disorder (ASD) and observes and tests these siblings throughout the first three years of their lives. Although I was concerned about being able to make the appointments over a three year period, my husband and I decided to join the study with our youngest son Nicholas (Nicky) because we wanted to do everything we could to help with autism research. Additionally, because we have three other sons with ASD, we knew the study would help us determine for sure whether Nicky did too. Knowing whether Nicky had ASD like his other three brothers was important, so I put everything else aside and made time for the phone interviews, MRI appointments, as well as developmental testing visits at the center.

Our research experience has been amazing! So many doors have opened since we participated in IBIS! We found out at an early age that Nicky also has ASD, but that knowledge changed everything. All of the doctors and researchers involved were able to make recommendations that have helped Nicky grow socially in a very short period of time. We found a new developmental pediatrician and made educational decisions regarding Nicky’s current Individualized Education Plan (IEP) with the help of the research team.

I would encourage other families to get involved in IBIS because the connections I have made with other families and the support from the research team alone is enough reason to participate in the studies CAR provides. We have four sons on the autism spectrum, and we know more about the resources available for our family since we participated in IBIS and other research studies at CAR. We are very thankful for the experience and will continue to participate in future studies so that we can help other families!

Wednesday, April 17, 2013

4th Annual Huddle Up for Autism


Outreach Coordinator
Center for Autism Research

This year, Mother Nature graced us with a beautiful day on April 14th for the 4th Annual Huddle Up for Autism hosted by the Center for Autism Research (CAR) at CHOP and the Philadelphia Eagles!

Tickets for this carnival-style family fun day geared towards families who have children diagnosed with an autism spectrum disorder (ASD) sold out in less than a week this year!

This is an event that many families look forward to every year because of the unique opportunities it affords their children. Attendees can run out onto the stadium field and see themselves on the jumbotron, interact with current Eagles players, participate in a junior cheer clinic with the Eagles cheerleaders, take a tour of the Eagles locker room, run a football drill with Temple football players, or play a game of life-sized Angry Birds! We also have bouncy houses, face painters, balloon artists, magicians, the Philadelphia Zoo’s Zoo on Wheels, an interactive experience with staff from the Franklin Institute, and much more!

We pull out all the stops to help make this day as easy as possible for families who have children with ASD. Event staff strive to minimize the wait time in lines, gluten-free food is available, and quiet rooms are open for kids who are overstimulated and need a break from the event. Additionally, Child Specialists who are trained to work with kids with ASD wander around the stadium armed with stickers, temporary tattoos, small toys, and ear plugs. They look for children who are struggling and try to assist in any way they can.

We received lots of positive feedback from this year’s event! To quote from one mom who posted on CAR’s Facebook page, “We usually have to leave public events early as it is too much for my son. I was afraid this would be the case, but everyone was so nice and helpful, we were able to get through everything we wanted with no problem. Had a wonderful time, thank you and all your volunteers!!!”

Another mom sent her thanks along too, “Thank you so much for having this event! My family thoroughly enjoyed it. It was well run, organized, lines moved fast & the staff was awesome. It was our first time coming & our ASD son was having such a great time, he was crying when we were leaving. THAT means he enjoyed it, which a lot of times doesn't happen at events that have the potential to be overwhelming. The ease & flow of the experience allowed it to be enjoyable for him. MANY THANKS!”

We appreciate any and all feedback from this event and are happy to hear families enjoyed it as much as we did!

Last  year, we introduced a fundraising program for Huddle Up to benefit research at CAR. We are pleased to announce that YOU raised around $34,000 this year! This is a huge accomplishment!!! The money will be used to help CAR further its research into the biological causes of ASD.

We would especially like to recognize and thank our top three fundraisers:
  1. Megan Donegan raised $2,500 and received two pre-game field passes and two tickets to a Philadelphia Eagles home game for the 2013-2014 season.  Megan’s Game Day Experience also includes a parking pass and a $20 voucher to be used towards concessions or merchandise.
  2. Kevin Hitt raised $2,340 and received an autographed helmet by Eagles running back, LeSean “Shady” McCoy.
  3. Michelle Goldberg raised $2,095 and will join Eagles great and alum, Harold Carmichael for a behind-the-scenes tour of the Eagles practice facility, The NovaCare Complex.
We here at the Center for Autism Research look forward this event to every year, and we truly think this year was the best one yet!
 
If you haven't made a donation to CAR and would like to do so, you can visit Huddle Up for Autism's donation page here.

To view more photos from the event, please visit CAR’s Facebook page! We also encourage you to post any photos that you took at Huddle Up to our page as well!

Thursday, January 24, 2013

Spring 2013 Autism Events


autismMatch Family Consultant
Center for Autism Research

It is hard to believe that February is almost here! With the approach of spring comes a full schedule of autism events in the Greater Philadelphia region.

For your convenience, here is a compiled list of upcoming events.

Thursday, February 7th
Hosted by the Center for Autism Research at CHOP

Wednesday, February 13th
Hosted by ASCEND – The Asperger & Autism Alliance for Greater Philadelphia

Thursday, February 21st
Hosted by the Montgomery County Intermediate Unit

Lecture: Timothy Roberts, PhD, Vice Chair of Research, Department of Radiology, The Children’s Hospital of Philadelphia
Hosted by the Center for Autism Research at CHOP

Wednesday, February 27th
Hosted by the Center for Autism Research at CHOP

Thursday, March 7th
Lecture: Sarah Paterson, PhD, Director of the Infant Neuroimaging Lab, Center for Autism Research, The Children’s Hospital of Philadelphia
Hosted by the Center for Autism Research at CHOP

Saturday, March 9th
Hosted by the ARC of Delaware County

Sunday, March 10th
Hosted by the Variety Club

Tuesday, March 12th
Hosted by ASCEND – The Asperger & Autism Alliance for Greater Philadelphia

Thursday, March 21st
Hosted by the Center for Autism Research at CHOP

Lecture:
  • Hakon Hakonarson, MD, PhD, Director, Center for Applied Genomics, The Children’s Hospital of Philadelphia
  • Maja Bucan, PhD, Professor of Genetics, Chair, Genomics and Computational Biology Graduate Group, University of Pennsylvania 
  • Tara Wenger, MD, PhD, Pediatric Genetics Fellow, The Children’s Hospital of Philadelphia 
Hosted by the Center for Autism Research at CHOP

Saturday, March 23rd
Hosted by the Bucks County Autism Support Coalition (BCASC)

Tuesday, April 2nd
Resolution 62/139 of the United Nations General Assembly

Thursday, April 4th
Lecture: David Mandell, ScD, Director, Center for Mental Health Policy & Services Research, University of Pennsylvania Perelman School of Medicine; Associate Director, Center for Autism Research, The Children’s Hospital of Philadelphia
Hosted by the Center for Autism Research at CHOP

Saturday, April 6th
Hosted by the Variety Club

Saturday, April 13th
Hosted by the Gwynedd-Mercy College Autism Institute

Sunday, April 14th
4th Annual Huddle Up for Autism
Hosted by the Center for Autism Research at CHOP and the Philadelphia Eagles

Thursday, April 18th
Lecture: Gregor Kohls, PhD, Scientist, Developmental Neuroimaging Laboratory, Center for Autism
Research, The Children’s Hospital of Philadelphia
Hosted by the Center for Autism Research at CHOP

Saturday, April 20th
Hosted by Autism Speaks

Sunday, April 21st
Hosted by the Autism Society of America – Greater Philadelphia Chapter

Hosted by the Asperger Syndrome Education Network (ASPEN) 

Saturday, April 27th
Hosted by the Variety Club

Tuesday, May 7th
Hosted by ASCEND – The Asperger & Autism Alliance for Greater Philadelphia

Saturday, May 18th
Hosted by Autism Speaks

Wednesday, May 22nd
Hosted by the Center for Autism Research at CHOP