Friday, October 17, 2008

Boston Walk for Autism Update: from Autism Speaks

Greater Boston Walk Now for Autism Sunday, October 19th Suffolk Downs Racetrack in East Boston

Register yourself and your teammates at
We are just a few days away from the 8th annual Greater Boston Walk Now for Autism at Suffolk Downs Racetrack. If your friends, family and co-workers have not yet registered for the Walk please ask them do so today!

So far we have more than 575 teams registered to participate in this Sunday's Walk. We've raised more than $750,000 to date with your fundraising efforts and our supportive sponsors, including our newest sponsor, Digital Federal Credit Union (DCU) by contributing $50,000!We need everyone's help to get to our goal of $1.6 million. So please remember that it's so important to follow up with those individuals you might have approached for a donation but you haven't heard a response from yet. Chances are they would like to contribute they just need a gentle reminder.New this year - Be sure to stop by the Mission Product tables to purchase your exclusive Autism Speaks Walk Now Skincare Survival Kit or at The Walk Kit includes 5 must-have products for your Walk, and even better, MISSION donates 50% of all proceeds to Autism Speaks! So come to the Walk and Get Your MISSION ON!

Reminders for Walk Day -A logistics e-mail was recently sent with details about the big day. Here are just a few reminders...
1. There is plenty of parking at Suffolk Downs so we are no longer shuttling people to the Walk site. Therefore, take a little more time for yourself for getting to the event on Sunday. The doors will not open to Suffolk Downs until 9 am when we are all set up and ready to offer you a great day of food, entertainment and activities.
2. There cannot be any animals on site. If you bring your pets you will be asked to leave them in the car so please let them stay safely at home. This is the policy of Suffolk Downs Racetrack and we must abide by it.
3. UNO Chicago Grill will once again be providing lunch for us and Coca Cola and Boston Culinary Group will have bottled water available. Please remember that water station volunteers are required by Suffolk Downs to remove the caps from the bottles before handing them out. Please help us recycle this year by putting empty bottles into the designated recycling containers next to the garbage cans. If you have someone in your group who has special dietary needs or restrictions we ask that you pack them a lunch from home.
4. Come prepared to have a great day!
Thank you all so much for your wonderful commitment to this organization and its mission. We are incredibly grateful for everything you have done and continue to do. The success of this Walk is your success. THANK YOU.

See you on Sunday!
Greater Boston Walk Planning Committee

1 comment:

Anonymous said...

Excellent article written by Katie Wright. Keep this in mind when wasting your time and money walking for Autism Speaks. Their research is going in the complete wrong direction and will never help our kids.

October 19, 2008
Age of Narcissism? Pop Stars Nancy Minshew and Denis Leary
By Katie Wright

How fitting that these two self-obsessed boneheads are in the news on the same day.

I encourage all autism families to please check out the "Pop Star: Nancy Minshew" article (HERE.) But please, not if you are eating because you may become ill.

Last January, Minshew made a number of outrageous and baseless claims, on the record, to a journalist during an interview. Regarding parents who saw their children regress or become ill after receiving multiple vaccines Minshew opines: "you want to blame something…some people are not logical…" Minshew implores readers to agree with a judge's verdict (I guess not the Polings' judge) finding for Wyeth and dismissing the claims parents who saw their child sicken and regress following vaccinations. Minshew argues that vaccines do not trigger autism, stating that "the facts are autistic genetic abnormalities occur before birth." I guess the first 2 years of my son's normal development were an hallucination? Then Minshew eloquently states that all autism/vaccine discussions are "crappola." Nice.

This would be a lot more funny and a lot less sad if Minshew, so eloquent and open-minded, has not received $32 MILLION in federal grant money for her autism "research." Let's review Minshew's ground breaking research findings: "the brain is pre-wired and waits for experience to teach us things…With autism the brain is short-circuited…autistic people have strained social skills" And my favorite: early intervention is good! We will probably get some eye gazing studies thrown in there as well! Yes, that is correct, $32 million over the next 5 years, for redundant genetic research. This is not what I had in mind when I supported the Combating Autism Act. Autism Speaks assured us that this money would be well spent. I guess the joke is on me, or more accurately on Christian. I would also like to know more details about Minshew's involvement with Autism Speaks' scientific advisories bodies on which she serves.

Back to our "Pop Star" piece. The reader can almost envision Minshew smiling as she politely demurs being labeled a "star" and a "legend." In the piece we learn that Minshew is a "slim and stylish woman from L.A." who loves cats and parrots. She describes her cat as "regal and intelligent." Minshew raves about her travels in Italy! She also loves to read! I swear it is all there, read it for yourself.

"Dr. Minshew has been hard at work, groundbreaking work, for 20 years, putting Pittsburgh on the map and making quite a name for herself." Oh my God, who wrote this? A co-worker, a friend, Paul Offit??? Ok, enough fun. My point here in that NOWHERE in all of Minshew's "groundbreaking work" discussion on being a legend, traveling to Italy, do our kids even come up for discussion. It is all about Minshew and her amazing accomplishments. It is as if all this money was given to her by God almighty. Nowhere in this piece does Minshew acknowledge the incredibly hard work of all the advocates and family who worked tirelessly, campaigning for the autism research dollars that made her a "star." My parents probably made 20 trips to DC, exhaustively lobbying members of congress and the senate to fund autism research. I went with them on a few occasions. It was hard, hard work and guess who I never saw there: Nancy Minshew. Maybe she was in Italy, who knows, families like ours never take vacations.

We learn more in this article about her love of her parrot Andy, named for Hans Christian Andersen, than the suffering of autistic children. Nowhere does Minshew speak about the tremendous urgency to help our children in pain, families without resources, school without services. Nowhere does Minshew mention that autistic children and their families are in crisis, that 1 in 94 American boys are on the spectrum and that this figure is only rising.

This brings me to Minshew's soul-mate Denis Leary. It is all about them, more about them and how our kids serve their purposes and make them stars. For Leary it is about using our kids to sell his dumb, unfunny book. Tim Dwyer, retired NYC firefighter and proud father to Colin said it best in his letter to Leary when stating that our kids are neither lazy nor stupid and that Leary could not survive one day as a real firefighter or as a parent to an autistic child. Tim Dwyer went on to say that his son's school is struggling to stay open. There is no appropriate placement for Colin in New York City and Tim and Maria must sue the city year after year so Colin may attend a school for ASD kids. Money is very tight with the Board of Ed., families are losing their cases with greater and greater regularity and the Dwyers are pessimistic that they will get a fair re-imbursement. Tim says his son's school is struggling to stay alive and other options are few. In New York City parents must literally win a lottery to gain acceptance into the only public school for autistic kids

Just imagine the schools and services we could have for our kids with $32 million dollars.

Katie Wright has two young boys. Her oldest son, Christian, is severely affected by autism. He developed normally; smiling, talking, walking; only to lose every skill and every word by the age of 2 and a half. Upon the advice of medical professionals Katie and her husband were advised to pursue only high quality behavioral therapy, speech and OT for Christian. It had no meaningful impact on Christian until his parents sought help from DAN! doctors who treated the underlying causes of Christian's descent into autism. Christian has improved but still has far to go. He has Inflammatory Bowel Disease, the measles virus in his gut and an immune system akin to a late stage AIDS patient. Christian does not have a psychiatric disorder. Before autism, Katie Wright was the Clinical Director of Sexual Assault Crisis Center in Stamford Connecticut. Katie is proud to serve on the Boards of NAA and SafeMinds.