NAA and SafeMinds to AS: "Hey... What the Hell"!?

NAA and SafeMinds want Autism Speaks to explain themselves and their decision to distance themselves from Katie and her comments. I would love to hear the answer to that as well.

Statement from the National Autism Association (NAA) and SafeMinds regarding board member Katie Wright, her recent interview with David Kirby and subsequent statement from Autism Speaks

The National Autism Association (NAA) and SafeMinds compliment Katie Wright for her thoughtful commentary in a recent video interview. We were surprised by a subsequent announcement by Autism Speaks about Katie, whose son Christian was the driving force behind the creation of Autism Speaks by her parents, Bob and Suzanne Wright. The announcement stated that Katie should not be considered a spokesperson for Autism Speaks and her views do not represent those of her parents or their organization.

In her interview with Evidence of Harm author David Kirby, Katie speaks from her heart with regard to her son's diagnosis of autism, the struggles and hardships she and her family have endured as a result and what she feels should be the direction of autism research. In the interview, Katie makes clear she is expressing her views as a parent and not as a representative of Autism Speaks. It is odd that an organization would issue a statement counteracting something that doesn’t exist. A more serious concern is that Katie's substantive points on autism research and causation, which are shared by so many families, are apparently being opposed by an organization that has stated its commitment to pursuing all reasonable avenues of science.

NAA and SafeMinds offer our support of Katie, both as a parent and as a board member of our respective organizations. When Katie spoke to David, she represented the thoughts of thousands of parents who believe they delivered their healthy infants to a doctor’s office for government mandated vaccines only to witness their lapse into sickness and regression into autism.

Parents bring a wealth of expertise to science and treatment discussions because they are the ones confronted on a daily basis with the needs of their children and as such, their opinions should be actively solicited and embraced. Parents like Katie add perspective and urgency. They play an essential role in directing precious resources towards the most promising ways that will most quickly improve the lives of those suffering with autism now and prevent its occurrence in the future.

In keeping with these principles, our organizations ask Autism Speaks to clarify the rationale for issuing their announcement on Katie. We ask them to assure the community that meaningful autism research on the role of the environment, including vaccines and their components, will assume dramatically greater and expedited prominence in its scientific and treatment agendas.

To view the interview between David Kirby and Katie Wright go to www.autismmedia.org

To view the recent statement from Autism Speaks regarding this interview see http://www.autismspeaks.org/wrights_statement.php
For information regarding the National Autism Association or SafeMinds go to www.nationalautismassociation.org or www.safeminds.org

Katie Wright Speaks for Me!

Note: Anyone wanting to send supportive emails to Katie Wright can do so through the National Autism Association at naa@nationalautism.org

Last week at Autism One I had the good fortune to be present for Katie Wright’s official coming out. FAIR Autism Media debuted the 30 minute version of their two hour piece in which David Kirby interviews Katie Wright, which she gets to tell the full story that she was not able to tell on Oprah (more on the Oprah interview to come).

It was followed by a Q&A in which Katie expressed her affection and respect for her parents for all they were trying to accomplish in ending autism, and vehement frustration with Autism Speaks scientific board. Displaying all the passion that us mom’s are usually able to work up when talking about the state of research and the head in the sand position that the medical community is in, Katie said that it is time for the AS board (who has vastly more control over the direction of research than Bob Wright) to “stop awarding research grants to their friends” and put the money into environmental and biomedical research. I am sure you can imagine the ovation that she garnered from the audience.

During that session, and in a previous one, she stated very empathetically that she understood the position of those on the board who came to AS from NAAR. That they had been working toward the genetic causes of Autism for decades and were very invested in that line of inquiry. She also praised them, saying that they were out there looking for a cause long ago when no one else was. But, she said, that “now that their children have grown, it is time for them to step aside” and allow the research to shift.

Katie also spoke several times about her father. She was asked frank questions about him and she answered them frankly. To the question as to whether or not Mr. Wright would be hesitant to look into the vaccine question because of all the ad money that pharma spends at NBC, she plainly said that it would not be the case. With her hand over her heart, she repeatedly described her father as a man of very high integrity who would not be influenced by such matters. She further said that if anyone tried to bring pressure to bear on him in that respect, “that would be a big mistake for them, it would backfire.” She spoke with conviction and I believed her.

Katie told us that her father has seen Christian’s progress and is open and interested in the biomed approach. She also said that his hands are somewhat tied as he has contractual obligations to the people at NAAR to continue their lines of research, and that the people on the board who are not open to the environmental lines will be in place for another four years.

If it were Bob Wright’s intention to ‘turn the ship’ of AS, in my estimation it will take 5 or 10 years. With the pace of biomed research moving forward at the pace it is, they may miss the party, or arrive just in time to validate the research that DAN, NAA, SafeMinds and their sister organizations are pioneering.

Have I mentioned that finding the gene that causes autism won’t cure autism, just get people who have it aborted, just like those with Downs? Just wanted to remind you.

The Wrights have issued a statement distancing themselves from their daughter:

Statement from Bob and Suzanne Wright, Co-founders of Autism Speaks

Katie Wright is not a spokesperson for Autism Speaks. Our daughter's personal views differ from ours and do not represent or reflect the ongoing mission of Autism Speaks. Her appearance with David Kirby was done without the knowledge or consent of Autism Speaks.

Autism Speaks is committed to finding the causes of and a cure for autism. We are proud of our scientifically based research programs, including those established by NAAR and CAN, and will continue to pursue them. The members of our scientific advisory teams have impeccable credentials and we fully support them. There is no question that genetics plays the leading role in autism and that environmental triggers are key issues for many children. These areas, as well as biomedical treatments, need huge research support.

Autism Speaks merged with NAAR because it believes in and supports its scientific mission, methods, and advisory board. We are proud of the accomplishments of NAAR and grateful to the families and volunteers who created it. They are a tremendously valued part of Autism Speaks. We welcome input from volunteers and parents/guardians of children with autism of all ages, including adults with autism. We apologize to our valued volunteers who were led to believe otherwise by our daughter's statement.

Not kind to Katie. I am sure it was to smooth ruffled feathers on the board of AS. However, The Wrights need to understand that the tide has turned. Just like their grandson, our children regressed following vaccination and get better under the DAN protocol.

It is time for Autism Speaks, to Listen.

So I will be respectfully writing to the Wright’s this week to let them know that their daughter speaks for me. I encourage you to join me and write to them, copying your letter to the scientific board. Put in the subject line: “Katie Wright Speaks For Me” and tell them your story, and what specific causes and interventions are relevant in your case and what you want them to research.

Autism Speaks
2 Park Avenue
11th Floor
New York, NY 10016

Bob Wright - Co-founder
Suzanne Wright - Co-founder
Gary W. Goldstein, M.D. - Chair, Scientific Affairs Committee
Mark Roithmayr - President
Peter H. Bell - Executive V.P. - Programs and Services

Let’s let Autism Speaks live up to their commitment to listen to all parents.

Thank You Katie. Again.

UPDATE: The Wright's statement on the AS web site has been since it was first posted:

Old statement:

Katie Wright is not a spokesperson for Autism Speaks. Our daughter's
personal views differ from ours and do not represent or reflect the
ongoing mission of Autism Speaks. Her appearance with David Kirby was
done without the knowledge or consent of Autism Speaks.

New statement:

Katie Wright is not a spokesperson for Autism Speaks. She is our
daughter and we love her very much. Many of Katie's personal views
differ from ours and do not represent or reflect the ongoing mission
of Autism Speaks. Her appearance with David Kirby was done without the
knowledge or consent of Autism Speaks.

UPDATE:

David Kirby comments on the rift caused by the interview:

Katie is an amazing person, and her parents are great people. They're a great family, a terrible thing happened to them [Christian's severe autism], and they're dealing with it as best as possible under a glaring spotlight. My intention is not to create any kind of rift - but I had to ask her some tough questions about the foundation that was created in her child's name. She went out of her way to defend Autism Speaks and her parents. [But she did make the comment] that the older generation of parents who helped create NAAR (the National Association for Autism Research) and focused on genetics should perhaps step aside and let younger parents try something new.

She praised them for starting NAAR - and I don't think she intended anything malicious - but umbrage was taken by parents, volunteers, and donors from NAAR who didn't appreciate Katie's comment. But it was heartfelt and sincere. I feel terrible personally that this came back in a negative way - that a rift was created in the family. People ask if I'm going to blog about this and I say no, I think I've cause enough trouble for this week - kids should not be estranged from their parents or grandparents!

Does that last line mean that Katie is estranged from her parents over this?

UPDATE: Sara at FAIR Autism Media reports that, "Katie didn't betray her parents. Her parents saw the video before it's release and even asked for a few edits... Katie views her parents in the highest regard and would never intentionally try to hurt them or what they are trying to accomplish in the autism community. Listening to Katie's comments, the Wrights sound like a very close family and I'm certain they're working things out."

Cure Autism Now Folded Into Autism Speaks

Autism Speaks is less than two years old, but has alreay swallowed up NAAR and is generating the most press and $$ of any autism group. The Wrights have now brought Cure Autism Now into the fold. CAN speculates that Autism Speaks will be a 100 million dollar per year organization in 5 years.

AS gets CAN's research base, CAN gets AS's money.

The big question remains, will the now uber autism charity Autism Speaks begin paying attention to the DAN! treatments that are actually working and recovering children and improving their lives? Will they put money into research that actually brings results?

They have promised to "listen to parents". I for one plan on being a nagging voice for them to have the chance to listen to.

From Autism Speaks:

NEW YORK, NY – November 29, 2006) – Autism Speaks and Cure Autism Now (CAN) have signed a memorandum of understanding to combine operations, uniting the nation's two leading autism organizations and their cutting-edge programs for research, biomedical treatment and advocacy. The merger was announced today by Mark Roithmayr, president of Autism Speaks, and Peter Bell, president and chief executive officer of CAN. Due diligence and final board approvals are expected to be concluded by February 1, 2007. The consolidated organization will be known as Autism Speaks, Inc.

The consolidation of the two non-profit organizations will provide the scale necessary to respond to the crisis of autism, the nation's fastest-growing developmental disorder. Both groups share a commitment to accelerate and fund biomedical research into the causes, prevention, treatments and cure for Autism Spectrum Disorders; to increase awareness of the disorder; and to improve the quality of life of affected individuals and their families.

“Autism Speaks and Cure Autism Now believe that a combined organization will attract more resources and facilitate large-scale research, while providing the funding necessary to launch planned clinical and quality-of-life programs. A single entity will foster collaboration among the best scientific minds and most dedicated advocates. This is how we will reach our common mission -- finding a cure for autism,” said Bell and Roithmayr in a joint statement.

“Since their founding, Autism Speaks and CAN have committed more than $80 million to autism research and education, established scientific resources, promoted awareness and led federal advocacy efforts,” said Bob Wright, co-founder and board chairman of Autism Speaks. “During the past year, we have worked closely with CAN on critical issues facing the autism community, and now we will truly be able to combine our efforts and passions toward our common goals.”

“When we started CAN ten years ago, they told us you can't hurry science,” said Jonathan Shestack, co-founder of Cure Autism Now. “But with an extraordinary group of committed families and scientists we created a field from scratch and proved that, indeed, you can hurry science. In this next chapter, with Autism Speaks, we intend to move further and faster.”

Autism Spectrum Disorders are diagnosed in one in 166 children, with four times as many boys than girls affected. Autism has increased tenfold in the last decade. The Centers for Disease Control and Prevention have called autism a national public health crisis.

The combined organization will maintain both Cure Autism Now's and Autism Speaks' national walk programs and professional staffs. The scientific research processes, advisory boards and protocols of each entity will be integrated and flagship CAN programs, including the Autism Genetic Resource Exchange (AGRE), Autism Treatment Network (ATN), Clinical Trials Network (CTN) and Innovative Technology for Autism (ITA), will be expanded.

From CAN:

Dearest Friends:

Though the word friends hardly does justice to how we feel about you. You have been our brothers and sisters, our comrades in battle, our shoulders to cry on, the arms that lift us up. When we look in each otherÂ’s eyes we see the same thing--that crazy mix of determination, sadness, endless love and hope for a better future.

We are writing today to tell you about a big decision that we are making at Cure Autism Now; we pray that it will be the right one and we hope that you will join us.

We have decided that we can best serve the people we love with autism by joining forces with Autism Speaks and becoming one much, much stronger organization. The urgency with which we approach our mission will be the same, the optimism and creativity and compassion will be the same. But we are betting that our ability to get the message out, reach more people and fund more research will be greater. And it needs to be.

Because even though things are better than they were 10 years ago, more people are getting diagnosed than ever before. The numbers are going up not down, there is more sadness not less and there is more that we must get done.

We are bringing our innovative science programs, including AGRE, ATN, Clinical Trials Network and Innovative Technology for Autism. We are creating a new well-funded program that will pursue high risk, high reward research. And we will be adding more money and more reach and the ability to truly spread the message all over the country. We will be joining up with thousands and thousands of other families who are as passionate as we are. And if we were loud before, we will be louder.

We are writing to say that as we join Autism Speaks, we pledge to stay true to everything Cure Autism Now is and to bring that into the new organization. And so we ask you to come with us. We ask you to get more committed, show your passion with even more power and dedication. We will be getting bigger and stronger and tougher and more insistent. As we grow, we will get even faster not slower, our hearts will grow bigger, we will listen to you harder. Whether our kids are 3 or 30, can't say a word or can't stop talking about the baseball schedule, we want better lives for them. And whether we are called Cure Autism Now, Autism Speaks, or that perennial favorite in our house, Autism Sucks, our commitment to a better life for those with autism does not change.

Is there a downside? Well we suppose all those T-shirts and coffee cups become memorabilia, but that is a small price to pay. And at CAN we have always been about building the future, not dwelling on the past. Still now might be a good time to look, for a moment, at what you have done as part of CAN. You have created a field of scientific research where there was nothing. You have written and passed the only important legislation for autism and are about to make history by doing it again with the Combating Autism Act. By creating AGRE, you have changed the way science is done and created the gold standard of collaboration. You have made autism part of the national vocabulary. You have given a voice to people who have no voice. You have insisted that this generation is worth saving.

We are so proud of everything we have accomplished so far and we believe that together, as we become the loudest, largest, most mobilized and powerful force our community has ever seen, we can do twice as much in the future.

Join us. Help us in the next part of the journey. Help us as we help Autism Speaks speak passionately, truthfully and urgently for all of us and our children, now.

Portia Iversen and Jon Shestack
Parents of Dov Shestack, age 14

and

Dear Friends and Family,

It is with great enthusiasm that I announce that Cure Autism Now and
Autism Speaks have signed a memo of understanding to combine
operations, thereby uniting the nation's two leading autism
organizations.

After much deliberation and careful consideration, we truly believe
that speaking with one voice can do the greater good for all
individuals living with autism. By giving the relatively new, yet
highly resourceful organization of Autism Speaks the wisdom and
guidance as well as the already established and innovative programs
of CAN (the Autism Genetic Resource Exchange, Autism Treatment
Network, Clinical Trials Network and Innovative Technology for
Autism, etc) we ensure the maintenance and enhancement of these
existing endeavors as well as future research and treatments for
autism with expanded advocacy and improved quality of life goals.

Some of the many points considered that we felt made this decision
optimum are:

· More resources: Autism Speaks will raise $30-35 million
in '06 (CAN will raise $10.5M). AS science budget is at least $20M
while CAN's is currently less than $8M. AS is expected to be a $100M
organization within 5 years.

· National footprint: AS and CAN chapters are complementary;
combining will establish more presence in local communities. AS has a
strong presence in the NE (New England, Metro NY), South Florida
(Miami/Palm Beach), Pittsburgh and St. Louis while CAN's strength is
in the West Coast (LA, SF, OC, Seattle), Mid-Atlantic (DC, Philly)
and Chicago. AS vision includes a chapter in all 50 states.

· One voice: The autism community will benefit from having a
unified and stronger voice to raise awareness and promote funding for
research and treatments.

· Science: CAN science (staff, advisors and programs) is
second to none. Future funding for key programs will be maintained
and enhanced and significant opportunities will exist for even more
funding of much-needed research through AS' demonstrated fundraising
capacity.

· Awareness: Synergies exist to raise even more awareness for
autism beyond current levels. CAN developed a vocabulary of hope and
urgency; AS has access and resources to distribute messages to a
broader audience.

· Advocacy: CAN and AS have successfully collaborated on the
Combating Autism Act (CAA). Once the CAA passes, the combined entity
will begin to focus on a services bill and possibly state-specific
pieces of legislation due to more resources being available.

· Improved quality of life: Based on increased resources, the
combined organization will be able to concentrate on other programs
that directly benefit those individuals currently affected by autism.
AS currently has a Family Services Committee that we hope to develop
and expand.

All future CAN events such as the Chicago Auto Show, Oscar Night and
WALK NOW will go on as planned. Randy and I will continue to be
involved as these two organizations become one, and we hope we will
be blessed with your continued support.

If you have any questions at all please feel free to contact Randy or
myself at anytime.

Yours truly,

Kim and Randy Wolf