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SafeMinds Action Alert: Autism Hearing in Congress

Urgent-Actions-WBMdAUTISM  HEARING  IN CONGRESS

THURSDAY, NOVEMBER 29th AT 2:00 PM

RAYBURN HOUSE OFFICE BUILDING - ROOM 2154

PARENTS AND ADVOCATES:

PLEASE ATTEND, GET YOUR CONGRESSMAN TO ATTEND AND SPREAD THE WORD.  COME TO WASHINGTON.  BRING YOUR CHILDREN.

On Thursday, November 29th at 2:00 pm, The House Committee on Oversight and Government Reform will hold a hearing regarding the federal response to autism over the past decade.  EBCALA, SafeMinds and many individual parents have worked hard to make this happen.  Our understanding is that two panels are scheduled - one of government witnesses and one of public witnesses, including SafeMinds. 

Do you think the federal government is doing enough about autism?

Do you think the Interagency Autism Coordinating Committee has helped your family?

Do you think federal policies have prevented new cases of autism?

Have you seen results from the government's hundreds of millions of dollars in research spending?

If you answered "No" to these questions, here's what you can do to help:

  1. Attend the hearing if possible.  Bring your child or children if you can.  Let's try to make the hearing "standing room only".  Be visible.      
  2. Contact your Congressman right now.  Committee members and contact info are listed here  and it is critical that they attend the hearing. If yours is on the list, make sure you contact their office (leave a message) and ask that they attend. Other Representatives can be found here.    Ask them to attend the hearing and stay for the entire meeting.  If they cannot, ask them to send staff.  If you are going to Washington, ask for an office meeting, before or after the hearing, to talk about your family's needs and concerns.  Or meet with them Thanksgiving week when they are home in your district.  Remember they work for you and this is the first time in 10 years that Congress has provided oversight of autism activities.  Encourage them to get involved in the House Autism Caucus long term.      
  • Ask your Representative to make sure this is the first of numerous hearings investigating autism and affiliated issues.  We don't just want attention, we want solutions!  This is especially critical if your Representative is on the committee.  We need new champions to carry on after Congressman Burton retires.      
  • Individuals and organizations are able to submit written testimony to the hearing. If you are a member of a local autism organization, encourage them to participate by submitting a written statement.  Statements become part of the formal record of the hearing.  To submit testimony, you may fax it directly to the Committee at (202) 225-3974, or e-mail it to Beth Clay at beth@bethclay.com and she will ensure it is delivered to the Committee.    
  • Ask C-Span to televise the hearing.  Call 202-737-3220 and politely ask that they televise the hearing on C-Span 3 which covers hearings.  Tell them that this is an important issue that deserves more attention and why it affects you personally.    
  • Thank Congressman Burton for his advocacy over the years and for pushing for this hearing to happen by sending him an e-mail here or calling his office at 202-225-2276. You may also fax him at his Indiana Office at (317) 846-7306 or his DC office at Fax: (202) 225-0016
  • Stay tuned for more updates including the names of those who are testifying, materials to share with your Representatives and further details.

    Thanks for your help in making this a meaningful event!

    Comments

    Feed You can follow this conversation by subscribing to the comment feed for this post.

    Who is going to this? Who is going to be allowed to speak?

    Benedetta, I'm happy to have my letter leveraged, and thanks for the compliment.

    Dan, I copied and pasted your letter -- hope you don't mind but I did not give you the credit.

    Actually I did write my own and sent it and then I sent yours too.
    I really had trouble with the choices that Mitch McConnel gave me -- could not decide between health or crime so I said what the heck and sent each letter twice under one and then the other.

    Hal Rogers main focus is on illegal drugs. On his website he says he went to a meeting at the end of Oct on that very subject. He thanked the doctors of Hazard, Kentucky for being the first to alert the state of what was happening.

    Hmmmmm, and well they should have been in the position to notice and thus be the first to alert the state, since they had years to watch all those moody, mood swinging, seethering with hate teenagers as they grew up to be the successful drug addicts they are today.

    So, I sent Congressman Rogers both mine and Dan's letter; first under health and then the under the Congressman's best beloved topic; illegal drugs.

    Dan- I am glad you wrote that letter and helped me out -- I seem to be having a lot of anger issues myself in the last couple of weeks.

    Hi Dan Burns- Thanks for posting your letter. Here are my emails -

    Hi Ms Russell,

    I am a fan of Mike Quigley and a voter for him. I live in XXXXXX with my 2 daughters. My older daughter has a diagnosis of severe Autism. I am very active in the research area and politics of Autism, and just found out that we have successfully received a date for a hearing related to Autism, the first in 10 years.

    I can't attend this. I am a single parent and work full-time. I am reaching out to make sure Congressman Quigley will attend this entire hearing. I know that he is part of the House Committee on Government Oversight and Reform , thus may already know about this important issue. We are currently at 1:88 children being diagnosed with Autism. It is a true epidemic and we need Congress involved. I am hoping you also will attend as I was told that you are involved in health issues in our district. I would be able to email and/or talk more about this when you are available.

    We need to make sure that this is the first of numerous hearings investigating Autism and affiliated issues. We don't just want attention, we want solutions! Since Congressman Quigley is on the committee, I am hoping that he will help carry on after Congressman Burton retires.

    Sincerely,

    Teresa Conrick


    Hello Teresa –

    Thank you very much for contacting me. I handle health care issues for Congressman Quigley. Autism is an important issue to us, and we want to do all we can draw attention to the need for more research and assistance. On a personal note, my mother has been a primary school teacher for over 20 years, and has worked with numerous students with autism. She has shared with me many of their stories, and I understand the challenges faced by both students with autism and their families.

    I will certainly bring up this hearing to Congressman Quigley, and do my best to attend as well. Thank you again for bringing this important hearing to our attention.

    Please stay in touch, and don’t hesitate to contact me if our office can be of assistance.

    Warmest Regards,

    Robyn

    Hi Robyn,

    Thanks again for your reply. I just need to clarify a few things. Autism is so much more than issues of learning and schools, although that in and of itself is a huge issue, but more importantly, we are talking about medical issues that are an increasing part of Autism. My daughter has seizures, chronic viral and bacterial infections and a recent autoimmune diagnosis. These are factors that have increased beyond comprehension, from a rare disorder of 1:10,000 in the 1980's to 1:88 currently and climbing. It is not "better diagnosis," but a true epidemic that needs the full attention of our government. The quality of these children's lives must be considered. It is a moral and ethical need.

    I realize Congressman Quigley may be busy but this needs to be a priority. I am hoping that both of you will be attending as representatives of so many families here in IL but also, as humanitarians that genuinely care about the future of so many affected children as well as the prevention of more cases. You need to attend to fully get the most knowledge so you can fight for these children.

    We must all be passionate about this epidemic of Autism as it needs to be stopped. The following video is short yet shows what too many of the children and the families endure. The amount of pain and suffering is agony. You can do something about this and it must start by attending on November 29th. I look forward to your thoughts on this urgent matter.

    Sincerely,

    Teresa Conrick

    http://www.youtube.com/watch?v=5lTGrAkW8hU&feature=youtu.be

    I hope this time they will have a sign in sheet as I want the truth about whether or not my reps office sent someone.
    Maurine

    Is there a place where families that can/will go get info/coordinate?

    I have never been able to attend, however, maybe this time, I just want to get some better info..

    Will other families kind of coordinate to make sure we are all making sure we get all of our own points across AS WELL as make sure issues related to families like ours are all covered in general as well to help represent those families like ours that can not be there?

    Best/cheapest travel info? Hotels in area that are safe and secure?

    Thanks in advance!
    Angie
    Proud Mom to Ethan, Alex, Megan, and Sega our Miracle Dog

    Here is my letter to Congresswoman Bernice Johnson, Democrat of Texas.

    Dear Congresswoman Johnson,

    On Thursday, November 29th at 2:00 pm, The House Committee on Oversight and Government Reform will hold a hearing regarding the federal response to autism over the past decade. Much has been spent but little has been accomplished. Twenty-two years into the autism epidemic the parents of vaccine-injured children are like the rebels in Syria: outgunned, isolated, and largely ignored by the rest of the world. We need your help.

    Failure to act now would be economically disasterous. If the autism epidemic ended today we would still have the cost of caring for the already afflicted. If prevalence continues to increase at 10% per year for another 22 years, one in ten 12-year-olds will be on the spectrum, and services and supports for our disabled adults will surpass the cleanup cost of two Sandy-scale hurricanes per year. Add to that other autoimmune disablers — asthma, allergies, and ADHD for starters — and preventable chronic diseases will force a major cut in the US defense budget or bankrupt us.

    We can end this nightmare now. We know enough about the causes – toxins, both chemical and biological -- to reverse the curve and start reducing prevalence. Please attend this hearing. If you cannot, please send staff.

    Best wishes, and thanks for the important work you are doing for seniors and the disabled.

    I have seen , so many times the "science" knocking back the potential for the prevention of autism. We need to put laws in place,studies should no longer be sponsored by anyone receiving funding from pharmaceuticals or from a government agency that promotes vaccines. Salaried scientists, with no connections or promise of bonus need to be in position to tests these vaccines.We need to stop the control lobbyists have over our legislature, this is truly detrimental to the well being of this nations children. We got to 1 in 88 thanks to lobbyists, big money should not buy our children's futures.

    Jim Kirk
    Editor-in-Chief, Chicago Sun Times

    Dear Mr. Kirk

    I am writing in regard to “Every Child By Two’s” campaign asking “parent advocates” to write to you and request that actress/author Jenny McCarthy not be allowed to have a column in your newspaper.

    I am from the UK, so am not a potential customer of the Chicago Sun Times, but in the UK too, it is very difficult to persuade newspaper editors, most of whom, rely on advertising from the pharmaceutical/chemical industries to survive, to publish any autism news or research which might damage that relationship. Instead we get a steady stream of articles, which in many cases are nothing more than damaging corporate sponsored propaganda.

    I was pleased to see that Dr James Perrin, new president of the American Academy of Pediatrics, now calls autism an epidemic and the AAP is now endorsing new research into autism dietary and other interventions, and acknowledging the existence of a gut-autism link in many of these children.

    I would just like to commend you for publishing a column by author and autism parent Jenny McCarthy, in your newspaper. Ms McCarthy is such a beautiful lady and talented writer, and I am sure her column will be a huge success in the US. I am only sorry that I will be unable to purchase this newspaper, but I am confident everyone in the US autism community will support this initiative. Hopefully, thanks to your bravery, other newspapers will follow, hopefully in the UK too.

    PLEASE do not be bullied into abandoning this initiative, by pharma sponsored campaigns to stop Ms McCarthy’s column.

    Best wishes

    Jennifer Allan

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