Front and Center: Follow-Up on Rep. Maloney’s Autism-Vaccine Briefing
Managing Editor's Note: Many people worked hard to make this post possible. Thank you to David Kirby and Mark Blaxill, Kelli Ann Davis of Generation Rescue, John Gilmore of Autism Action Network and several others. Please read the post carefully, there's a call to action. It requires some thought and will take some time. Our kids are worth it.
By Jeanne Cantkier, Pamela Felice, Lisa Rudley and Angela Warner.
Warrior Help Is Needed and Necessary!
On September 24, 2008 our community experienced a monumental and potentially game changing moment. Thanks to the organized efforts of our dedicated community, there was standing room only at the Autism-Vaccine Briefing hosted by Rep. Maloney and presented by David Kirby and Mark Blaxill.
As a community, it is absolutely imperative that we follow-up now with our legislators to keep the Autism-Vaccine issue front and center. Getting all those people in the room together was just the first step. They have listened, and now we need to let them know what they can do to help our children. Remember, they work for us, the people!
Regardless of whether you initially contacted your Representative or Senator about the Autism-Vaccine briefing, we need you to RALLY NOW to follow up. Contact information to participate in the follow-up and a list of the Senate and House members who attended or sent staff can be found at the end of this post.
Here’s What You Can Do:
1. Contact your Representative and Senator’s office to:
a. Thank them if they attended.
b. Let them know (politely) that you are disappointed that they did not attend if they had in fact RSVP’d
c. Let them know that the Autism-Vaccine briefing took place if they did not attend and did not RSVP.
2. Mail each person a copy of the briefing transcript (HERE)
3. Urge each staffer who did attend to brief the Representative or Senator they work for.
4. Of most importance, let them know what you would like them to do next.
Representative Maloney intends to re-introduce H.R. Bill 2832 – Comprehensive Comparative Study of Vaccinated and Unvaccinated Populations Act of 2007. With this information in hand, one of the most important things we can ask for is their support of this Bill when it is re-introduced. Make sure they understand that autism is a national emergency impacting 1 in every 67 children in this country (HERE). To demonstrate the importance of the study and Bill that Rep. Maloney will introduce, you could refer them to the survey conducted by Generation Rescue (HERE), and communicate to them the undeniable findings of this survey as they relate to autism and implicate vaccines.
For those of you who are comfortable in asking for more there is a great “ask” suggestion list following the contact information. For those of you who would like to participate, but are not the most comfortable with talking or emailing, we can provide you with tools to help you do one or both.
How To Contact Your Legislator:
If your Representative or Senator’s office was in attendance, it is important that they hear from YOU, their constituents, directly! We'll send you the contact info you need. Email us at [email protected] with your name, city, and state. In the subject line please list ONLY your time zone (EST, CST, MST, PST), and state abbreviation (ex: PA), and the “follow-up mom” handling your area will send you the needed information including the above mentioned tools. You can check the updated list below. It’s in order by state. After you have contacted your Representative and Senator's, drop us an email at [email protected] and let us know how it went and what their response was!
The Autism Action Network (formerly A-CHAMP) has given us the opportunity to MASS email our Representative and Senator’s offices (HERE). Everyone needs to DO this! You can personalize your email to include additional information. While it will not go directly to the staffer that attended the briefing; the national emergency of autism commands the action of our entire community and NOW!
Your help is critical to maintaining our momentum. Everyone’s commitment to our children, and our future children, has opened this door. It is time to walk through that door and get the job done!
Additional Suggestion Ask List:
Remember that real families and children need your help
Ask for a fundamental change in how we think about autism:
* Treat autism as a national emergency, we need a sense of urgency
* Drive a shift in focus to environmental causes, they can be prevented.
Include vaccines and mercury… they are clearly implicated
* Provide opportunities for true participation from the autism community in key agency processes by enforcing real external input on the NIH Strategic Plan through the formation of an Autism Advisory Board, and give us more seats on the IACC
* If your state is working to pass an autism insurance mandate, ask them to support passage of this mandate. The estimated cost of life long care for a person with autism far exceeds the cost of medically necessary treatment which can bring significant improvement and recovery.
* Recognize that the overwhelming priority is prevention, treatment today (not gene hunts or esoteric science projects) services and justice. And to that goal provide funding for prevention, education, treatment, insurance, research, and lifelong care
Ask for Studies:
• Support H.R. Bill 2832 - Comprehensive Comparative Study of Vaccinated and Unvaccinated Populations Act of 2007
• Support H.R. Bill 1973 – Vaccination Safety and Public Confidence Assurance Act of 2007
• Draft legislation to study the rising levels of background mercury and inorganic Hg exposures in the U.S. Dan Olmsted discusses this in his article, “Demon Barbers of Mercury Street" (HERE) published in Spectrum Magazine on Sept. 28, 2008
• Draft legislation to study the prevalence of mitochondrial dysfunction in ASD and regressive ASD
Conduct Hearings that would:
• Investigate the NIH research matrix and its over-emphasis on genetics
• Investigate the Agency for Toxic Substances and Disease Registry, for their failure to investigate the increases in both the local and nationwide toxicity to which American children are exposed and the devastating social consequences that have resulted
• Determine the estimated lifetime costs of caring for all Americans with an ASD and project the total cost to society that will be incurred if we do not reverse the autism epidemic
• Investigate the mishandling of VSD data by CDC staff and the usefulness of the VSD for evaluating a thimerosal link. David Kirby addresses this in his article, "Weaknesses and Limitations" (HERE) of the CDC's Vaccine Safety Database, October 2, 2008
• Investigate the FDA for their failure to adequately monitor the safety of vaccine production and for holding vaccine manufacturers to a lower standard of safety than other, non-mandated pharmaceutical products
• Hold agencies accountable for avoiding research that might find a link between vaccines and autism based on the comments of former Director of the NIH, Dr. Bernadine Healy (HERE.)
House
Robert Cramer AL D
Jo Bonner AL R
Jackie Speier CA D
Zoe Lofgren CA D
Henry Waxman CA D
Barbara Lee CA D
Duncan Hunter CA R
Loretta Sanchez CA D
Jerry McNerney CA D
Mark Udall CO D
Christopher Shays CT R
Mark Castle DE R
Dave Weldon FL R
Adam Putnam FL R
Robert Wexler FL D
Ginny Brown-Waite FL R
Nathan Deal GA R
Tom Price GA R
John Barrow GA D
Dave Loebsack IA D
Ed Whitfield KY R
John Tierney MA D
Chris Van Hollen MD D
Joe Knollenberg MI R
John Kline MN R
Michelle Bachman MN R
Tim Walz MN D
Chip Pickering MS R
David Price NC D
Brad Miller NC D
Earl Pomeroy ND D
Frank LoBiondo NJ R
Steven Rothman NJ D
Frank Pallone NJ D
Carolyn Maloney NY D
Kirsten Gillibrand NY D
John McHugh NY R
Nita Lowey NY D
Charlie Wilson OH D
David Wu OR D
Robert Brady PA D
Charlie Dent PA R
John Murtha PA D
Todd Platts PA R
Bill Shuster PA R
Jim Langevin RI D
Gresham Barrett SC R
Joe Wilson SC R
Stephanie Herseth-Sandlin SD D
John Tanner TN D
Zach Wamp TN R
Gene Green TX D
Louie Gohmert TX R
Pete Sessions TX R
Lloyd Doggett TX D
Silvestre Reyes TX D
Frank Wolf VA R
Nick Rahall WV D
Senate
Lisa Murkowski AK R
Jeff Sessions AL R
Johnny Isakson GA R
Saxby Chambliss GA R
Barack Obama IL D
Richard Durbin IL D
Mitch McConnell KY R
John Kerrey MA D
Ted Kennedy MA D
Olympia Snowe ME R
Norm Coleman MN R
Claire McCaskill MO D
Richard Burr NC R
Byron Dorgan ND D
Kent Conrad ND D
Frank Lautenberg NJ D
Robert Menendez NJ D
Ron Wyden OR D
Gordon Smith OR R
Sheldon Whitehouse RI D
Jack Reed RI D
Lindsay Graham SC R
Tim Johnson SD D
John Cornyn TX R
Kay Bailey Hutchinson TX R
Orrin Hatch UT R
Bernie Sanders VT I
Maria Cantwell WA D
Russ Feingold WI D
Robert Byrd WV D
Jeanne, Pamela, Lisa and Angela are Mother Warriors.
SIGN LADY!!!!! I think I love you! Thank you so much for posting that link. As the DEPt. of Ed. and Military numbers confirm each other, I think I will be calling PSU to find this guy and have a debate with him. Hell, I may just invite him to lunch. PSU is in my backyard afterall :D
HA HA HA HA HA HA!!!!!!!!!!!
Thanks for the adrenaline rush! I needed that so I can get my dishes done and dinner started!
Ang
Posted by: Angela Warner | October 14, 2008 at 06:02 PM
Teena Graves,
Welcome! I am so happy you found us. I read your post twice, but have so many questions, and hope you'll come back to share your story with us.
How is your daughter? Is she getting better?
I am always sad to meet new parents here, because it means we aren't reaching all the people we need to reach, but happy at the same time because we can help one another.
Looking forward to hearing from you again!
Terri Lewis
Posted by: Terri Lewis | October 12, 2008 at 12:33 PM
Regarding your use of the Department of Education's 1 in 67 figure for autism prevalence, look how desperately the journal Pediatrics tries to spins the facts, to discredit that number.
(Guilty conscience, AAP?)
http://pediatrics.aappublications.org/cgi/content/full/116/1/e120
Posted by: sign lady | October 12, 2008 at 02:27 AM
I accidentially FOUND THIS WEBSITE!!!!! I am happy that you people are on the same page that I am on about Autism!!!
I just learned how to use a computer recently, because I was only the person in my town was furious what happened to my child after she had changed drastically after all her immunization shots. I had found out the year 2002 watching C-Span a 3hour show a Senate Comminittee Speaker Sr.Dan Burton. This hearring was on C-Span the same week my child was diagnosed with Autism.
I'll be checking out your website I am happy to met you all !
Teena G.
Posted by: Teena Graves | October 12, 2008 at 01:01 AM
Everybody--
Maybe this *call to action* got lost in the shuffle.
There has been a lot of autism/vaccine news happening right now, including some truly fantastic breakthroughs, and maybe people just skimmed right past this.
That must be what's happened, because I know we are tens of thousands strong here, and so far. . .it sounds like only a few hundred people have done any follow-up with Congress.
Let's make a big push on this--all through next week--and report back on any news here.
We worked hard to get Congress to listen; let's not get shy now that we have their attention.
Terri
Posted by: Terri Lewis | October 10, 2008 at 01:50 PM
So far Barack has “walked the walk” to help keep mercury out of our food supply.
“The bill's chief sponsor, Sen. Barack Obama, introduced the bill in response to a 2005 [Chicago] Tribune series about mercury contamination in fish… ‘We know that mercury can cause serious developmental problems in children…’”
http://science.the-environmentalist.org/2008/09/obama-sponsored-mercury-storage-bill.html
Posted by: sdtech | October 10, 2008 at 08:36 AM
I contacted everyone I could representing OH. I was pleased to recieve a letter from Charlie Wilson thanking me for contacting him about Carolyn Maloney's meeting and expressing his feelings that this is an important issue.
He informed me that a staff member would attend as well.
Lastly he communicated that "it is important that every possible step is taken to find the causes and links responsible for the spread of the disease."
His was the only response I got in OH.
Posted by: OH | October 09, 2008 at 10:37 PM
I am doing this from Northern Ca. by snail mail. I got added to mailing lists from the last time, but not one personal response.
I don't want their auto response! I will let you know if I get anything in return.
Posted by: K Fuller | October 09, 2008 at 09:54 PM
Terri,
No apology needed dear! Yep, I think I will keep giving him an "earfull" because nothing pisses this warrior off more than being ignored! Ask my husband, he knows.
I am going to answer to the CALL TO ACTION (after I put my monkeys to bed) tee hee!!
Posted by: rileysmom | October 09, 2008 at 08:55 PM
Thanks to everyone who has emailed followupmoms today!
Terri, dude... you totally rock! You know I already thought that; but, I just felt the need to say it again!
This IS a call to action, and so vitally important. If everyone could just focus on the task at hand and know that with every call, fax, and email our elected officials receive, we are educating them.
Remember, most of your legislators are not intentionally "ignoring" autism; they just aren't informed - and THAT is where you all come in.
A giant thanks to everyone who has stepped up and acted... it is going to take ALL of us to get this job done. All of us. Working together. We can do this!
Again, Terri... hats off!
Posted by: Jeanne | October 09, 2008 at 08:27 PM
First, Terri Lewis! Thank you for your positive support that this is an ACTION ALERT! You may hear from Kim on my behalf :D
I want to say, as a military spouse who has worked diligently (and long hours) for the past year to get our military children increased and equal coverage, and more importantly as a mom who has worked on this effort and push for the last week; what we need to do right now is take action! This type of push works and is effective! I know from first hand experience.
This is a time to focus on what is in front of us that will benefit our children and act on that! We want to hear your story and hear about the action you took!
We received several emails today at [email protected] and we want our inbox to be flooded! As of early this afternoon, hundreds of you had used AAC's action alert to submit your letter! Thank you all sooo much!
Keep it going! Take this link and send it out to every person you know if you've not already! And then come back here to our safe haven and share share share!!!! :D
Posted by: Angela Warner | October 09, 2008 at 08:11 PM
TJ,
No offense taken.
Let's stand on our common ground here: "make sure that it doesn't happen to others."
Have you contacted your Senators and your Representative? Congress is supposed to represent us. Let's make ourselves heard.
Terri
Posted by: Terri Lewis | October 09, 2008 at 07:29 PM
Pamela Felice,
We will ask the Age of Autism to post the day and time of the interview when we are ready. Thank You
Posted by: Sandy Waters | October 09, 2008 at 06:02 PM
Okay.
I'm right here with you in Ohio, Robin, and--yeah--none of my representatives was at that meeting representing ME.
So:
1. Sent my best-shot e-mail to Senator Sherrod Brown. He may be simply uninformed and in need of a push on the importance and urgency of this issue.
2. George Voinovich, who got a grade of "FFF" from the folks at www.autismfacts.com, is beyond all hope. (With apologies to you, Riley's mom, and keep on givin' him an earful if you think it might help--go Riley's mom!) My plan is to vote him out in 2010, but maybe I'll give him an earful in the meantime. . .
3. Rep. Jean Schmidt, who has been given a grade of "F" by the Autism Facts site, is up for re-election in November.(Go Victoria Wulsin!)
And--just in case anyone missed it--
This is A CALL TO ACTION.
NOW. SPEAKING WITH ONE VOICE.
So--what does anybody else know?!
Terri
Posted by: Terri Lewis | October 09, 2008 at 04:54 PM
Terri,
No offense but we don't KNOW for sure what causes autism. While probably most of us suspect that vaccine played a big role here, we need to find out for sure and make sure that it doesn't happen to others. And while I have treated my son biomedically, we have not had the success of Jenny McCarthy and others. I need some real answers NOW.
And I also saw McCain/Palin on Hannity & Colmes. I loved it. I pray that they are serious. I also pray that if Obama gets elected he will also seriously look into this issue. (Although I fear that he will get too busy with other issues.)
Posted by: tj | October 09, 2008 at 01:24 PM
I host a radio program with my husband Robert Waters on Autism One Radio and the name of our radio program is named after our daughter Candace. It is called "The Candy Store". My daughter Candace is eight years old and has moderate/severe (classis) autism. We will be interviewing Republican Vice President Candidate Sarah Palin's sister who has a 13 year old son with moderate autism. Also, Sarah Palin has a 6 month old baby boy with Down's Syndrome. They know what autism is like per my conversation with Sarah Palin's sister.
Please feel free to listen to the show.
Posted by: Sandy Waters | October 09, 2008 at 12:49 PM
Thank you to EVERYONE who has emailed so far! Keep them coming!!!
Robin, Charlie Wilson from OH did send a staffer. While I understand your frustration as I had people from my own state who RSVP'd and did not attend; being anything but polite will only hurt our children.
Given the committees that Brown, Sutton and Voinovich are on, and what was going on that day, it is understandable why they did not attend.
We have to remain positive and we must remain polite!
Keep the emails coming folks!!!
Posted by: Angela Warner | October 09, 2008 at 12:03 PM
Stephanie,
Welcome.
Have you been able to get the *real* help you need for your child? I ask, because you mention that McCain and Palin are going to find out "what is the cause" of all this autism, and that your child has classic autism.
We already know the cause, and most everyone here is treating their autistic child (or children) with biomedical treatments (diet, supplements, chelation). There's more info. at www.generationrescue.org.
(Also, forgive me if I read your note wrong; you may already know all of this.)
Also, this post is a call to action. I hope you'll join us.
Terri Lewis
Posted by: Terri Lewis | October 09, 2008 at 11:34 AM
Did anyone see McCain/Palin on the Hannity & Combs interview with Sean Hannity, at the end McCain brought up autism and expanded on his previous statements, stating that Palin and himself are going to get to the bottom of this epidemic and find out what is the cause, and helping out the families that have been devastated by this injury. I know, I am the mother of a five year old with classis autism.
Posted by: Stephanie Matthews | October 09, 2008 at 10:10 AM
None of my congressmen attended. Unless I’m missing something, on the senate side neither Sherrod Brown nor George Voinovich attended or sent a representative, although Brown had RSVP’d and said that he would. My House Representative, Betty Sutton, did not attend either. I had written and called all three before the briefing asking (politely) for them to attend. And I did write to Mr. Brown afterward, although I am afraid that I did it a week or so ago and you’re too late with your plea to ‘please be polite’.
From Sherrod Brown I had gotten another one of those stinking form letters. And it said that the mercury had been removed, and yada yada-- basically all of the SOS. Even though I had sent information to his office explaining that there’s still the same high levels of mercury in the flu shots, with sources sited. They choose to ignore this information. The flu shot clinics continue to poison people and the people who could stop it choose to ignore it. I’m sorry but it’s getting kind of hard for me to remain polite.
It all makes me very embarrassed and ashamed to live in Ohio. But what do you expect from a region of the country that is so dominated by the health care industry that even the ‘autism support organizations’ have seemed complicit in the poisoning.
Posted by: Robin Nemeth | October 09, 2008 at 10:06 AM
The Autism Action Network needs to be advised that The Burton bill, "National Vaccine Injury Compensation Program Improvement Act of 2008" has been designated 2008 H.R. 6391.
Their web site has the old designator.
http://autismactioncoalition.org/federal.html
Here is the "summary" of 2008 H.R. 6391 taken from
http://www.govtrack.us/congress/bill.xpd?bill=h110-6391&tab=summary :
6/26/2008--Introduced.
National Vaccine Injury Compensation Program Improvement Act of 2008 - Amends the Public Health Service Act to revise provisions of the National Vaccine Injury Compensation Program.
Specifies how loss of earning is to be calculated for vaccine-related injuries to individuals under the age of 18.
Increases the award for vaccine-related deaths.
Allows compensation under the Program for expenses for family counseling and for establishing and maintaining a guardianship, conservatorship, or trust for an individual with a vaccine-related injury.
Allows a special master to make an interim award of attorneys' fees and costs under certain circumstances. Allows such award to be payable directly to the petitioner's attorney.
Extends the statute of limitation for vaccine-related injury or death to six years after the date of injury or onset of symptoms.
Specifies who is to be a member of the Advisory Commission on Childhood Vaccines. Provides that the Commission shall meet at the call of the Chair (currently, the Commission must meet not less than four times a year).
Amends the Internal Revenue Code to increase the amount of expenses for administering the Program that are allowed to be paid from the Vaccine Injury Compensation Trust Fund. Allows the payment from the Trust Fund of administrative and personnel expenses that the Bureau of Public Debt incurs for financial services for the Trust Fund.
Requires the Secretary of Health and Human Services to include a public service announcement in efforts to inform the public about the Program.
So far the H.R. 6391 has six co-sponsors which basically means everybody needs to contact their people in D.C.
Please read the "National Vaccine Injury Compensation Program Improvement Act of 2008" as you would any bill before you lend support. As you will see, H.R. 6391 is worthy of our full support.
Posted by: kerbob | October 09, 2008 at 08:23 AM