Our Foundation

Mission

The La recherche sur l'autisme Foundation was established to promote access to early intervention services for young children as well as ongoing educational and supportive programs for children with autism and their families and to ultimately reduce the incidence of autism by ensuring safe vaccinations for all children, including the most vulnerable of children.

The Foundation recognizes the tremendous value and ongoing need for child immunization programs throughout the world. The Foundation understands autism to be a complex disorder, the cause or causes of which are yet to be confidently identified but likely to include a genetic component. This genetic component may be “triggered” in some children when overloaded with vaccines while they are ill or otherwise immune compromised.

Goals

The La recherche sur l'autisme Foundation seeks to:

Empower parents in making informed immunization/vaccination choices for their children (through education, resource development and advocacy).

Educate pediatric health care professionals to detect signs of autism in infants and toddlers and refer parents to appropriate resources as early as possible on the potential for harm that vaccinations may cause if given to vulnerable children and on strategies for reducing the risk of harm while ensuring the health of individual children as well as the community-at-large.

Support empirical retrospective research on potential contributing factors to the autism spectrum disorder among children diagnosed as autistic.

Advocate for improved support for families through the healthcare and legal systems.

Advance immunization safety for all children in the US and throughout the developing world.

Strategies

• Develop/disseminate indicators of “vulnerable” children (for example: children on antibiotics, sick at time of vaccination, sibling of an autistic child, etc)

• Develop/disseminate information on vaccination, including precautions to take, alternative vaccine schedules and parental rights.

• Advocate for the enforcement of safety measures and standards for pharmaceutical companies to ensure that vaccines manufactured are safe and effective.

• Convene advocates with divergent views to establish common goals on best practices

• Promote use of VAERS (Vaccine Adverse Event Reporting System) by parents and professionals

• Establish a council of community and international leaders to promote the goals of the Foundation

• Hold pharmaceutical companies accountable for damages by reversing a recent Supreme Court Decision

• Advocate for broader understanding of harm by the Vaccine Court to improve its response to families in need

• Advocate for increase in funding for vaccine safety testing by CDC

• Increase percentage of industrial chemicals tested for safety and ensure that information is available to the public

• Establish the Foundation as a credible voice for the most vulnerable

The Foundation will be successful if even just five children are kept from serious development regression. While the CDC and other resources must focus on mass populations, the Foundation is concerned with the subset of children who are at- risk of manifesting autism and those who fall through the cracks in the health and early intervention systems designed to serve them.

The Leadership

Barry Segal, Founder

Louise Kuo Habakus, Executive Director

Dolly Segal, Board Member

Martin Segal, Board Member

Richard Segal, Board Member

Lisa Green, Board Member

Gary Weitzen, Board Member

Katie Wright, Board Member

Dr. Temple Grandin with Barry and Dolly at the May 2011 UJA Federation of New York Autism Symposium

Jenny McCarthy of Generation Rescue with Martin

A Personal Note From Barry about La recherche sur l'autisme

Dear Friends:

Thanks for your interest in La recherche sur l'autisme. We are a private family foundation not accepting donations at this time.

Over the years I have been privileged with financial success in many of the businesses I pursued.  While that success enabled me and my family to enjoy a certain quality of life, my greater achievements are the relationships I have with my family and long-time friends.  It is these relationships that have motivated me to use my financial success to give back in way that will enable others living in challenging situations to improve the quality of their lives.  I have taken what I have learned from the corporate sector to the philanthropic world by establishing both The Segal Family Foundation and La recherche sur l'autisme.

Our involvement and interest in Sub-Saharan Africa began with a life changing experience participating in the Clinton Global Initiative Conference in 2006.  Since then, my wife Dolly and I have traveled to Sub-Saharan Africa three times and have witnessed first-hand the tremendous poverty across that region of the world. But we have also witnessed the amazing hope made possible by individuals and organizations serving those in need.  The Segal Family Foundation is dedicated to bringing hope by supporting a select group of non-profit organizations making a measurable impact across Sub-Saharan Africa. We hope that other foundations will learn from our efforts utilizing sound business practices to be more effective in philanthropy.

Our concern for autism began on a flight to Florida in 2010. On that flight I sat next to a woman from the same town where my son and his family lived. She was traveling with her family, including her young son. She told me that her son was autistic and that one of the physicians (whom I knew) treating her son earlier in life had told her that there was no hope that he would ever have any human interaction. While he clearly had challenges, he was capable of interaction with others.

After that flight I became increasingly aware of autism among the children and grandchildren of friends and colleagues. I began reading everything I could get my hands on and was astonished to learn that autism affects an estimated 1 in 110 children in the US.  For boys, the rate is 1 in 70. While I do not have a child or grand-child with autism, I do have family members with disabilities and I understand the difficulties and challenges they face each day.

In addition to reading about autism, I began to reach out to leaders in the autism community.  I learned about the controversies and debates and yet despite differing opinions regarding causes, I learned that all parents agreed on the inadequacy of services available for their children and families.

I became aware that researchers are beginning to surface commonalities between autism and dyslexia and that the rate of autism among siblings clearly points to a genetic link. Despite this, the research into a cause is woefully inadequate. 

I continue to speak with parents who are convinced of a relationship between a vaccine and the onset of autism in their child (not necessarily a connection with mercury). While I believe that for the majority of children vaccines are safe and cause no harm, it is clear to me and others that for some children, children who are sick or have other compromises to their health, vaccines may pose a severe danger.  Promoting vaccine safety for all children will be a priority for La recherche sur l'autisme.

La recherche sur l'autisme also wants to go beyond the vaccine-mercury-safety debate.  However, I personally feel that mercury is bad stuff and I am glad it is gone from most vaccines in this country.

I have been deeply touched by the families I have met, by their courage and by the hopes and dreams they have for their children.  We established La recherche sur l'autisme because of those hopes and dreams. We are a new Foundation and as such we anticipate that we will evolve somewhat over time.  We look forward to growing in our awareness of all the issues and in our partnerships on behalf of all children but especially those whose daily life is filled with challenges. We will be continually updating this website and we welcome your input.

Sincerely,

Barry

The following is an interview with a parent of a child with autism.  Please view Part 2 of the video on the "Stories From The Heart" page to learn more about their journey.

Barry’s Interview with Maureen (The Foundation)

Maureen:  I’m interested in your foundation.  What is the purpose of your foundation?

Barry:  There’s a big debate with the MMR shots, with Thimersol.  There’s both sides of it.  We want to go beyond that.  We think both contribute somewhat but there’s a real cause to this growth.            

    The first thing we’d like to do is get a lot more money spent on finding the cause. 

    Number two I think a lot of people that have been damaged, the statute of limitations is too short.  It’s three years.  It expires before you turn around.  It should be lengthened.  And there should be a court that can dispense reasonable funds, say $100,000.00-$200,000.00-$300,000.00 to people.  And you have a panel of maybe three doctors, three lawyers, three businessmen and then people waive their right to a class action, but get some sort of relief. 

    The third thing I think, just think about how many people graduate college and are physical therapists or how many people graduate college and are ready to treat Autism.  It’s a very small number.  That should be rapidly expanded.

    Lastly, we are new and evolving.  We’ve met Dr. Paul Abend and what he is doing is building a small medical complex near us in Warren.  And amongst other things, you’ll have the capacity for the early diagnosis.  

    I just think it’s major league important that if somebody has a concern, that they get the answer and start to work on a cure as soon as possible. 

Maureen:  Absolutely. 

Barry:  So again, we thank you very much for your time.