Cure Autism Now | July 1997 Update

[Note: Shared for #AutisticHistory archive purposes. This is NOT An Autistic Ally.]


CAN Information

5225 Wilshire Blvd. #503 LA CA. 90036 (213) 549-0500, FAX: (213) 549-0547 E-mail: CAN@primenet.com, website: http//www.canfoundation.org

UPDATE: July 1997 

  • CAN is 19 months old. 
  • CAN has raised over $500,000. 
  • CAN is currently funding pilot studies and think tank sessions. 
  • CAN now has over 8,000 supporters



CAN Biomedical Research Conferences:

Los Angeles:
CAN has sponsored two conferences for parents and professionals in Los Angeles, featuring Dr. Ricki Robinson, to learn about the latest biological interventions and research. They were attended by over 700 people. 
In December 1996, CAN presented visiting guest lecturer Dr. Michael Chez, pediatric neurologist specializing in EEG abnormalities in autism and PDD in Los Angeles.
CAN and the Bureau of Jewish Education will co-sponsor a mini-symposium on behavioral and biological interventions in autism on March 18, 1997.

New York: CAN presented a one day conference in New York City in July 1996, which was attended by over 600 parents and professionals. 

Orange County, California:
Another conference was sponsored by the Orange County CAN Chapter in October 1996. 
Chicago:
A full day conference featuring leading edge autism biomedical researchers has been scheduled by the Chicago CAN Chapter on September 27, 1997.

New York:
A full day conference featuring leading edge autism biomedical researchers has been scheduled by the New Jersey CAN Chapter on November 15, 1997.

CAN Sponsored Brainstorms:

Los Angeles

CAN held its first brainstorm session in Los Angeles, in May, 1996: an all-day seminar with experts in autism and related fields of neurology, metabolic genetics, immunology, etc. Researchers exchanged data, new research projects were generated, collaboration on certain projects was agreed upon, and some of the scientists from outside the field decided to initiate autism research projects. The idea of a collaborative autism gene bank was first proposed at this meeting.

CAN has since held a series of mini-workshops in Los Angeles bringing together local researchers, clinicians and newly interested investigators from UCLA and USC to compare findings and collaborate on new projects.

CAN is sponsoring a Neurology of Autism Think Tank March 8-9, 1997 in Redondo Beach where pediatric neurologists and autism researchers from around the country, as well as NIH leadership, will be meeting for two days to present new findings and to address the problem of establishing a comprehensive neurological work-up in autism.

CAN has funded a brainstorm session to be held in Boston and led by Dr. Margaret Bauman, the fieldsÕ leading neuroanatomist. The meeting will bring together the best neurochemists, neurologists and geneticists to help determine how best to use the small supply of autistic brain tissue.

CAN and the John Douglas French Foundation, (a foundation which funds Alzheimer’s Disease research) will co-sponsor a two day seminar entitled ÒThe Social Brain,Ó October 25-26, 1997 in Redondo Beach, California. This meeting will bring together top neuroscientists from around the country whose expertise is relevant to both dementia and developmental disorders.

NIMH Activities:

CAN co-sponsored a two day Genetics of Autism Conference, held by the NIMH in September, 1996, where experts in the field of autism genetics met with top geneticists from around the country. All agreed that the potential for genetic findings in autism, and thus potential treatment, were enormous.

CAN Autism Genetic Resource Exchange (AGRE):

CAN is currently recruiting multiplex families (more than one family member affected by autism) for our AGRE project – a gene bank made up of multiplex families, for genetic research in autism. It is our goal to create a repository of 100 well-defined multiplex families, including immortalized cell lines and DNA samples, which will be made available to ALL qualified researchers worldwide. We anticipate that the creation of the Autism Genetic Resource Exchange (AGRE) will accelerate autism research dramatically by providing much needed samples to researchers from both within and outside the field of autism. Francis Collins, head of the Human Genome project, and other prominent genetic researchers believe that autism is the most likely of all the neurobehavioral disorders to have a gene or genes. The discovery of one or more genes in autism would lead directly to the identification of that geneÕs protein and thus open the door to investigating treatment or a cure. Time cannot be wasted, as the fields of genetics and gene therapy are exploding – autism can and must be at the forefront of this new technology to reap the benefits and rewards our children so desperately need and deserve. Multiplex families can enroll in AGRE or receive more information by calling the AGRE Family Coordinator at: (888) AUTISM 2.

CAN Cost of Disease Study:

CAN has commissioned and completed a cost of disease study which has been submitted for publication. The study indicates that the cost of autism to our nation is 13.3 billion dollars annually. Less than 5 million dollars per year is currently spent on biomedical research in autism by the combined National Institutes of Health. This new information has already started impacting autism research funding.

CAN Government Relations:

Board member Jerome Shestack, President Elect of the American Bar Association, has helped lead our effort to influence Congress to allocate more money for biological research in autism.

The 1997 House Health and Human Services appropriations bill for the National Institutes of Health now includes the strongest language ever in support of autism research. This language was drafted by CAN. We have received significant help in this matter from Senator Specter and Senator Harkin.

In addition, the National Institutes of Health, in response to CANÕs request, has set up a committee to coordinate the efforts of the four NIH agencies that support autism research. This committee will then have to report its progress to Congress. This is a historic first that we hope will vastly accelerate the pace of autism research. 

The following is the language that CAN drafted and is now included in the 1997 appropriations bill for Health & Human Services. It appears in the allocation for the National Institutes of Health under the subheading of the Institute for Child Health & Development. This is the most aggressive detailed language that has ever been written in the bill about autism. It is also important because it is an official acknowledgment of the prevalence and cost of autism.

Language included in the 1997 House Health and Human Services appropriations bill for the National Institutes of Health:

Autism research – Autism effects 400,000 persons with associated costs of 13 billion dollars annually. Given the enormous cost to society of caring for an autistic person and the tremendous hardships it imposes on families, the Committee strongly supports an aggressive Autism Research Program. Further the Committee encourages the NIH to expand support for research on this severe disorder, including funding more basic and patient oriented research, and giving consideration to establishing a collaborative genetic resource that could enable more scientists to work in the field.

The Committee understands that there is an existing coordinating resource, the human biological data exchange, and urges that consideration be given to funding this resource. The Committee recognizes that the recent NICHD/NIDCD neurology and genetics RFA was in important step forward. Finally, the Committee recommends that consideration be given to the NICHD establishing an autism research coordinating committee comprised of the Institutes of the NIH presently supporting autism research. This committee would set a research agenda, eliminate redundancy, promote the field, and collaborate with the family volunteer organizations concerned with autism.

CAN – NIH Letter Writing Campaign:

GOOD NEWS: more research money from the National Institutes of Health. Dr. Varmus, Director of the National institutes of Health, has allocated an extra 4 million dollars for autism in 1997!

In late fall of 1997, we asked families to write a letter to the Director of the National Institutes of Health asking for more money to be allocated to biological research in autism. Hundreds of you sent excellent letters, copying your Congressmen and Senators, and we are delighted to report that your efforts succeeded.

Largely because of this letter writing campaign, the NIH has allocated an extra 4 million dollars this year for autism research – this nearly DOUBLES the amount being spent on autism research. The money is split between three institutes, Child Health, Deafness and Communication and Mental Health.

Also, because of family pressure, the NIH has created a coordinating committee of the four institutes that fund autism research so that they can better coordinate their efforts, instead of competing. Though we have a long, long way to go with the NIH, we feel that they are making a substantial and sincere effort to make up for years of neglect of autism by the scientific community. We applaud these efforts and we applaud you for helping motivate them to take action. In particular, we would like to thank Dr. Varmus, Director of The National Institutes of Health, Dr. Duane Alexander, Director of Child Health and Marie Bristol of Child Health, Dr. Steve Hyman, the Director of the Institute of Mental Health, Peter Jenson and Rebecca del Carmen also of Mental Health, and Judith Cooper from Deafness and Communication. They all deserve recognition for their special interest and dedication to helping people with autism. You might want to drop Dr. Varmus a note of appreciation. If you do, please mail a copy to CAN as well. Varmus’s address is: 

Dr. Harold Varmus
Director, the National Institutes of Health
9000 Rockville Pike
Bldg. 1, Room 126
Rockville, Maryland 20892

For years, the scientific community has had very little to offer people with autism and their families, but that time is gone. Recent advances in neuroscience, molecular biology and genetics hold out real hope for progress. We must not be afraid to embrace the scientific community, but rather we should encourage them and continue to use our power to motivate them. This recent budget increase is a great start, and it happened because of families like us. 

CAN Goes to Washington:

The week of February 23, 1997, CAN parents from around the country flew into Washington, DC to spend the week visiting their Congressmen who are on the Health and Human Services Appropriations Committee. These dedicated parents presented the facts about the long-standing neglect of autism research and requested increased research funding for autism, the third most common developmental disorder and the most underfunded common childhood disease today. The parents from CAN met with health staffers of over thirty members of Congress. Of special note were the direct meetings with Representative Porter, Chair of the House Subcommittee on Health and Human Services, and Senator Arlen Specter, Chair of the Senate Subcommittee of Health and Human Services.



CAN Fundraising:

Attention L.A., New Jersey & Chicago: SAVE THE DATE!! 

The First Annual Cure Autism Now (CAN) Foundation
CELEBRITY GOLF CLASSIC AND COCKTAIL PARTY & AUCTION 
will be held this summer at the following locations: 

LOS ANGELES: June 1, 1998 at El Caballero Country Club in Tarzana, CA. 

CHICAGO: July 13, 1998 TheMike Royko Celebrity Golf Classic
     at Ridgmoor Country Club in Chicago, benefiting the Cure Autism Now (CAN) Foundation.

NEW JERSEY: June 8, 1998 at Laurel Creek Country Club in Mount Laurel, New Jersey. 

All funds raised will benefit the autism research work of the CAN Foundation. These exciting celebrity events are designed to build awareness, and raise critical ’98 dollars for autism research.

But we need your support! 

If you or your corporation would like to be an event participant and sponsor or if you have possible sponsorship contacts — or if you can provide live or silent auction items — please let us know as soon as possible. We are also looking for volunteers for the events. 

Please contact Cathy Reeves at CAN’s Los Angeles office (213) 549-0500, e-mail: CathyR@primenet.com or Steve DiMarco at Golf on Earth, (818) 594-7277, e-mail: cogopro@aol.com for further information. 

We look forward to hearing from you and seeing you at the party and on the course! 

Illinois CAN Conference: “Therapy Update 1998 Autism/PDD” 
Saturday March 21, 1998 Pheasant Run Resort, St. Charles, IL.
For more information, call: (630) 462-3250 -IL CAN office.

Speakers:
Dr. Margaret Creedon – Auditory Integration Training 
Sally Bligh – Speech Therapy 
Carol Kuebel – Occupational Therapy
Dr. Neil Margolis – Behavioral Optometry 
Anne Maxwell – Discrete Trial Training
Carmen Gendel – Play Therapy 
Maude Damman – Music Therapy



Los Angeles:

  • The July 1997 premiere screening of Harrison Ford’s new movie Air Force One, produced by Jonathan Shestack to benefit the CAN foundation, was a major success, clearing over a quarter of a milliion dollars for autism research and bringing awareness of autism to the Hollywood community. 
  • CAN held its first annual Wine Tasting and Silent Auction, October 20, 1996 at Rsckenwagner’s Restaurant in Santa Monica, California. Thanks to our fantastic volunteers and many generous auction item donors, CAN raised over $75,000 for autism research, with 500 people enjoying a great evening! 
  • The Jazz Bakery held their Second Annual CAN Benefit on February 2nd, 1997. 
  • CAN was an official participant in the Los Angeles Marathon, held March 3, 1997. Twenty runners and many volunteers and pledgers brought in donations and raised awareness of autism. 
  • AIR FORCE ONE: The World Premiere of AIR FORCE ONE, starring Harrison Ford, produced by CAN co-founder Joanathan Shestack, will be held on July 21, 1997 and will benefit the CAN foundation. 
  • We are now planning for CAN’s second annual event to be held in February 1998. We need volunteers and auction items. The Event Committee is now forming, so please give us a call: (213) 549-0500


Philadelphia:
Grandparents Marciarose and Jerry Shestack hosted an evening of music featuring cabaret singer Julie Wilson in their home, December 8, 1996, and raised over $65,000 for autism research.

Canada:
CAN, with the help of Hollywood Permanent Charities and actress and CAN supporter Rene Russo, raised over $125,000 at a sports event and auction in Banff, Canada, January 16-19, 1997.

New Jersey:
June 16, 1997, P.A.C.T. (Parents of Autistic Children Together) hosted a charity golf tournament for CAN at Laurel Creek Country Club in Mt. Laurel. The event featured Nancy Glass of American Journal. This benefit brought in over $35,000. for autism research. 

Around the Country:
The CAN Cup yacht race and silent action are being planned for May 1998 in San Francisco. The Chicago Chapter is planning a fundraising dinner and silent auction for the spring of 1998. 
If you want to help with any of these events, or sponsor a fundraising event in your own community, please call the CAN office (213) 549-0500.

CAN Web Page (http://www.canfoundation.org)
CAN has established a web page – a gathering place for parents and researchers who share the vision that treatment or a cure for autism can and must be found. On the CAN web page, we are establishing a searchable database with abstracts of all autism research 1966- present. Look for the newly designed CAN web page coming online this summer!


CAN believes there is hope for a better life for our children. 




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