FEAT DAILY NEWSLETTER Sacramento, California

"Healing Autism: No Finer a Cause on the Planet" ________________________________________________________________

** REMINDER MONDAY MORNING April 15th: Karyn Seroussi, **

author of UNRAVELING THE MYSTERY OF

AUTISM AND PDD, will be featured on the Today

Show on ABC. This will probably be aired between

8am and 9am, in the 2nd or 3rd hour.

AWARENESS

* Hearing On "Autism Epidemic" Set For April 18

* Lord of the Dance: Neosho Teen Garners National Award

* Collegiate Volunteer Earns An A+

* Polly Ester's Fun Fundraiser in DC

RESEARCH

* Twin Study Shows Gluten Allergy Mostly in Genes

Hearing On "Autism Epidemic" Set For April 18;

ASA Members Urged To Contact C-SPAN

The Autism Society of America (ASA) will be speaking at a special Congressional hearing on the "Autism Epidemic" this week. ASA President Lee Grossman will be the lead presenter at the hearing, which is being convened by the House of Representative's Committee on Government Reform, on Thursday, April 18, 2002 at 1:00 p.m. in Room 2154 of the Rayburn House Office Building in Washington, D.C. Also speaking is ASA Board Member Stephen Shore.

"We are thrilled that this committee is taking the time to address this important issue. Our nation is in the grasp of a national health emergency. And an emergency response is what is necessary to counter the growing costs and fractured lives that are caused by autism," ASA President Lee Grossman said.

Between 2 and 6 per 1,000 individuals are estimated to have autism, according to the Centers for Disease Control and Prevention. This means that some 500,000 to 1,500,000 individuals in the U.S. have autism today, and the numbers are rising. Based on reports by the U.S. Department of Education, the California Department of Developmental Services, and others, ASA estimates autism is growing at a rate of 10 to 17 percent annually. If these rates continue, ASA estimates that the number of individuals with autism could increase by 100 to 400 percent over the next 10 years.

ASA is optimistic that events like this hearing will help us significantly enhance our efforts as a nation to find answers the questions that still plague autism – including what causes it, how it can be treated effectively, and how it can be prevented – 60 years after it was first identified.

The hearing is one of several events taking place this month, which is National Autism Awareness Month. Other events include a briefing by the U.S.

Congress's Coalition for Autism Research and Education on Thursday, April 18, 2002 at 10:00 a.m. (location TBD); and a rally on the national mall in Washington, D.C., on Sunday, April 21, 2002, from 12:00 to 5:00, which is being organized by several autism organizations.

Contact C-SPAN:

The ASA will be contacting the media for coverage, but could also use your help. We encourage you to contact C-SPAN directly to let them know you're interested in coverage of the April 18 hearing. You can send an e-mail to C-SPAN at the following address (events@c-span.com), or you can call them at (202) 737-3220.

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Lord of the Dance: Neosho Teen Garners National Award

A Neosho teen has known what he's wanted to do since he was 8: a career as a "boy ballerina."

Robert Clark, a 16-year-old student at Neosho High School and son of Garry and Kathy Clark of Neosho, has been pursuing his dream since the age of 9.

Currently, the youth dances between 20 and 30 hours a week at Joplin's Midwest Regional Ballet Performance Company and the Sensations Performing Arts Studio in Neosho.

"When he was 8 and just learning to talk, he looked at me one day and out of the clear blue sky said 'I want to be a boy baller- ina,'" Kathy Clark remembers Robert, who was diagnosed with autism at an early age, saying. "Dancing is all he wants to do. If he's not dancing, he's eating or sleeping."

And his hard work has paid off in the form of regional and national recognition. Robert placed first in the recent Dance America competition in Tulsa for his solo performance "All I Need is the Girl" and won honors for a group number "The Rehearsal."

And last weekend, he traveled to New York City to pick up a "Yes I Can" award from the Council for Exceptional Children. While thousands of young dancers nationwide were nominated for the award, only 35 were chosen: five in each of seven categories in the performing arts.

"On Sunday, April 7, he danced all day at a studio on Broadway," said Kathy Clark. "He thought dancing on Broadway and feeding the pigeons were the best things about the trip. It's amazing what he likes. He didn't like riding in the taxis, because he thought the drivers went too fast. But he did like the 'nice, clean white smoke.' We went across the river there in New York, and he saw these three big smokestacks with white smoke billowing out."

Kathy Clark said dance was a very physically demanding vocation, but one which could be profitable to a young man, as female dancers outnumber their male counter-parts 40 to 1.

"If you're a guy with any inkling at all that dance is what you want to do, they will really work with you, and help you," she said. "It's like they want to encourage male dancers all they can."

But the road to a career in dance is paved in hard work. And part of that is knowing weaknesses, Kathy Clark said, and then working on those weaknesses.

"He's having to learn how to do lifts, how to lift the girls," she said. "He doesn't have a real strong upper body, which is how a lot of kids with this disease are. But he has found out the girls do not levitate: if you drop them, they do fall. He feels so sorry when this happens."

Because there are so few male dancers, there is an accompanying lack of male role models for aspiring "boy ballerinas." Kathy Clark said she felt fortunate that the Joplin studio had several male dancers, one who at 14 is near Robert's age, the others who are in their late teens and above.

While Robert may have an different career interest from most youths his age, he is pretty much the typical teen. He's seeking election as his class' vice president and is involved with the Neosho High School Air Force Junior Reserve Officer's Training Corps.

"He loves that 'suit,' " his mom said. "He doesn't call it a uniform, he calls it a suit. He loves the tie. And he wanted to know why he couldn't wear it everyday. He wants to go to the school board and ask them why they can't have school seven days a week and why there aren't seat belts on school buses. And he wants to run for class vice president. I told him, 'OK, that was fine, but if you don't get elected, you tried. That's all that matters.' "

And like many teens, Robert's less than enthusiastic about homework.

"He's learning that if you don't hand things in, you get a zero," his mom said with a chuckle. "I tell him if you don't get something done for school, you won't go to dance. He'll bust his fanny to get it done."

In two weeks, Robert will be dancing with a production in Branson. And this summer, he will be one of the dancers in "The Wizard of Oz." While a scheduled performance in Neosho is still forthcoming, performances have been slated for Carthage and Galena, Kan.

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* * *

Collegiate Volunteer Earns An A+

As the mother of a 36-year-old autistic son, Woodie Ryan has been a tireless campaigner for her cause.

That cause: To raise awareness of autism and find help for the more than 2,000 families in Northeast Florida who are dealing with an autistic child.

In Jerry Waterson, she has found a remarkable ally.

Waterson, a 20-year-old sophomore at the University of North Florida, met Ryan, founder of the Autism Association of Northeast Florida (click here for association's Web site), when she spoke at Camp I Am Special, a camp for disabled children at which Waterson was a counselor.

Ryan talked about autism, a neurological disorder that interferes with the brain's development of reasoning, social interaction and communication skills. She explained how difficult it can be to care for someone with autism, which manifests itself in many ways, including repetitive behavior, tantrums, aggression, self-abusive behavior such as head-banging and extreme passivity or catatonia.

Ryan also told Waterson the biggest problem for families with autism is finding respite care, someone with the training to take care of an autistic person for a few hours or days, giving the regular caregiver a break.

Waterson's first response was to become a respite caregiver, or "buddy," to Ryan's son, Cary. But that was just the beginning. What he did next was so impressive that last night he was given the Making the Grade award as the outstanding collegiate volunteer during Volunteer Jacksonville's annual Celebration of Service ceremony.

Waterson organized UNF's Autism Links Club, negotiating the bureaucratic paperwork necessary to start an officially sanctioned club. Then he began actively recruiting members.

"We were hoping to have maybe 15 students at the first couple of meetings,"

said Dan Whitehead, an instructor in the UNF College of Health and the club's faculty adviser. "Instead, due to Jerry's energy and enthusiasm, the club has just mushroomed."

Today, there are 80 members in the Autism Links Club. Thirty-five of them work as buddies to people with autism, while the others help with club activities. Whitehead said Waterson, in addition to being an enthusiastic and aggressive recruiter, has turned out to be a superb organizer and delegator, one who gave members specific jobs and then made sure those jobs got done.

As the club has grown, Waterson's ambitions have gone beyond just matching up students with families in need of a buddy.

Tomorrow, for instance, UNF will play host for a daylong autism conference beginning at 8:45 a.m. in Room 1009 of Building 39, the College of Health's building. On April 21, the Autism Links Club will have a fund-raiser, a day-long table tennis tournament with the goal of raising between $3,000 and $4,000. Waterson wants to create a fund to pay students to serve as respite caregivers. By providing salaries for caregivers, the club will be able to broaden the pool of potential buddies, enabling students who need part-time jobs to work as respite caregivers, Waterson said.

Waterson, a business management major who says his goal will be to work as a fund-raiser for a non-profit agency, says the success of his club is proof that his generation of students "care about their community" and will rally to a cause if they think it will make a difference.

"You know you are helping," said Marisa Burkey, a 20-year-old UNF sophomore who is vice president of the club. "You know you're making a difference in a child's life."

* * *

Polly Ester's Fun Fundraiser in DC

For the third year in a row, Unlocking Autism is sponsoring the POLLY ESTHER'S OPEN YOUR HEART FUNDRAISER on April 19th, 2002.

Pack your best boogie shoes, grab your favorite pair of parachute pants or silk shirt and head over the Polly Esther's Dance Club

Polly Esther's is a three floor dance club that has era music separated on each floor. Groove to your favorite tunes from the 70s, 80s and 90s!

Cost of the event is $25.00 and includes both your cover charge for the whole evening and two free beverages.

All money raised will go toward assisting Unlocking Autism with the costs associated with this year's The Power of ONE! IDEA rally on April 21st.

Hope to see you there!

* * *

Twin Study Shows Gluten Allergy Mostly in Genes

412/hl_nm/allgeries_gluten_1 <-- address ends here.

People who are allergic to gluten, a protein found in wheat, barley and rye, have probably inherited the disorder from their parents, Italian researchers report.

This gluten allergy, known as celiac disease, is thought to be inherited to some extent, but the current study is the largest to date to look at identical and non-identical twins, according to the investigators.

By comparing identical twins, who are genetically the same, to non-identical twins, who share only the same number of genes as most other siblings, researchers can help determine how much of an ailment is genetic and how much is due to a shared environment.

In the new study, the investigators found that environmental factors have little or no effect on the digestive disorder, which can cause diarrhea, weight loss, stomach bloating and damage to the small intestine.

"This study provides substantial evidence for a very strong genetic component in celiac disease," according to Professor L. Greco from the University of Naples, Italy, and colleagues. They suggest that several genes work collectively to cause the disorder. A single missing or altered gene is probably not to blame, the authors note.

The findings are based on blood samples drawn from 47 identical and non-identical twin pairs, where at least one twin had been diagnosed with celiac disease. Individuals were tested for antibodies that are specific to the disease.

According to the results published in the April issue of Gut, in 38% of the twin pairs both had signs of celiac disease--75% of identical twins and 11% of non-identical twins.

In other findings, females who had an affected twin were 30% more likely than an unaffected male twin to go on to develop the disease themselves.

A shared environment did not affect the risk of developing the disease, the study found.

Although some genetic variations are known to increase the risk of the disease, much searching has not located a gene "that exerts a major affect," the researchers report.

It is more likely that "a series of genetic characteristics which individually exert little effect but which collectively characterize a large gluten intolerant tribe that is spread throughout the gluten-consuming world," Greco and colleagues conclude.

SOURCE: Gut 2002;50:624-628.

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APRIL 21, 2002 - 12 Noon to 5pm

THIRD NATIONAL AUTISM AWARENESS RALLY:

"The Power of ONE! I.D.E.A."

FREE and OPEN TO THE PUBLIC

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FEAT'S "Night of Caring" April 27

Sacramento FEAT is holding its' 9th Annual "Night of Caring" Dinner and Auction fundraiser on April 27, 2002. If you have been helped by the FEAT and the Daily Newsletter and would like to show your appreciation you can by supporting our fundraiser. Make an auction contribution or sponsorship donation. Please call 916-843-1536 for more information. Thank you.

FEAT is a tax-exempt non-profit corporation

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