Guest Author - Bonnie Sayers
The Cure Autism Now Foundation is celebrating ten years funding research, outreach and awareness activities geared to families, physicians, professionals, government officials and the general public.
For two years WALK NOW events have raised over five million. Cure Autism Now founded and funded the Autism Genetic Resource Exchange, which my family is part of. AGRE is a gene bank for autism, a resource for the study of genetics in autism. Currently there are 587 families in the database. Families with two or more children with autism can Register with AGRE.
The process is not difficult for the family. A Plebotomist will come to draw blood from all members of the family. This person is experienced with kids on the Autism Spectrum and works to make the child comfortable in their own home during the process. In fact I was worried about Matthew so he was on his bed drinking a bottle while this process was taking place. It turned out that Nicholas was more upset by this phase of the program, so he stayed in a beanbag chair with his teddybear.
If the parents are separated or divorced both will need to give blood and fill out paperwork. The testing and videotaping done at my house did not include the father. The entire process takes under six months. There are physical exams done in the house by a Physician. We had Dr. Smith for the first phase and Dr. Spence came along for another session.
The WALK NOW events are scheduled as follows for 2006:
WALK NOW Los Angeles April 22, 2006 at the Rose Bowl
WALK NOW AtlantaMay 6, 2006 at Turner Field
WALK NOW Las Vegas May 13, 2006 at The Star Nursery Field at the Sam Boyd Stadium
WALK NOW Chicago May 21, 2006 at Soldier Field
WALK NOW Dallas/Ft. Worth June 3, 2006 at AmeriQuest Field
WALK NOW Honolulu June 17, 2006 - location to be announced
WALK NOW New England June 17, 2006 at Gillette Stadium
WALK NOWSan Francisco June, 2006 - date and location not yet determined
WALK NOW Seattle September, 2006 - date and location not yet determine
WALK NOW Philadelphia September 30, 2006 at Citizens Bank Park
Other cities for the fall schedule will be updated as they become available on their websites. We will be visiting the resource fair at the Rose Bowl on April 22nd.
Each city site has a running of the total donations to date, message boards, information about their resource fair, event information, find a walker, start a team, matching gifts, maps, lists of hosts, find a team and volunteer.
Since we are located in Los Angeles I took my kids two years at the Dodger Stadium WALK NOW event for the resource fair. We have yet to tackle the actual walking part, but will try in the future. Both times I enjoyed watching Chaka Khan and took some pictures. My kids liked the bouncing machines that are located throughout the fair. One year someone was handing out fliers for where to get haircuts for kids on the Autism Spectrum. I would suggest having a booth at these events - parents like myself would pay a premium price for this service! You could even have booths for pedicures and trimming nails. This would allow the parent a break of these trying procedures.
There are lots of resources available at the booths for books, products, therapies, respite agencies, schools, non-profit organizations, therapists and much more. We took our Family Friends volunteer one year - but he brought along his girlfriend so they were no help to me with my two kids. It rained off and on at the event that year, and still a great turnout. This year the WALK NOW Los Angeles event was held at The Rose Bowl in Pasadena. We did not go since the previous years it was very close to our residence.
There is the Cure Autism Now Store where you can get shirts, cups, golf caps, wristbands and more. We purchased some items while at the WALK NOW event in Los Angeles. Also as an AGRE family I received a CAN shirt in the mail. Families can access the AGRE newsletters online also.
Another aspect of the Cure Autism Now website is the gallery of Photos. This listing is alphabetized by first name. Matthew and Nicholas Sayers have their photos posted along with our family profile. I wrote a review on Epinions of the CAN website back in April of 2004 and will share the details on how to post a photo of your child from that review:
You can use an initial for the last name if you prefer. There are a few steps to follow before this process can be completed. You get to choose a user name and password to enter the data and update profiles, as well as create the web page. There is a limit to three children per family and the person completing the data can be a friend or other relative besides the parent. The options in the drop-down box are – brother, daughter, friend, granddaughter, grandson, nephew, niece, other, sister and son. I suppose if you’re a teenager and want your photo listed you could enter your own data and choose other since self does not appear to be an option at this time.
Then you input the first name, middle initial and last name. These are the only required fields. For medical condition the choices are – Asperger’s Syndrome, Autism, No Diagnosis, Other, PDD/NOS. The birthday is entered with month/day and year. The box to add the image to the gallery has a browse button and then the box for making a web page. You do have the option to either cancel or submit this data.
You will receive a confirmation email with your user name and password. Once this has completed you can click on my profile at the bottom of the Cure Autism Now Foundation website that is located at www.cureautismnow.org. You will be prompted to input your user name and password. The profile consists of account information that includes email address, name and address and phone number.
There is also a button to edit profile for Loved Ones With Autism. When you have created the web page for each child then you can view the summary, edit work and spouse information as well as personal information. There is also an option to view other web pages that were created for children. I noticed that many of the pages were written by the adult, with background details on when the child was diagnosed and what type of therapies they receive. Other web pages are written in the child’s voice. On the bottom of all pages are several links, including Community Gallery where you can view these pages. Some of them also have a photo besides the one in the children’s gallery.
Their website also has a section where you can write a review on a therapist in your location to help benefit other families. I did this a few years ago as well. That is found under the Experts section and resources for each State. CAN is now part of Autism Speaks - www.autismspeaks.org