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SCHAFER AUTISM REPORT "Healing Autism:

No Finer a Cause on the Planet" ________________________________________________________________

Tuesday, December 23, 2003 Vol. 7 No. 254

--- > NOTE TOMMOROW CALENDAR DEADLINE ** DEC 24 ** FOR JAN UPDATE

--- > PROMOTE YOUR MEETINGS, CHAPTER OR CONFERENCE

No Cost to List

In the Largest, Widest Read "The Autism Calendar"tm

ADVOCACY

* Congress’ Unfinished Business at the End of 2003, Easter Seals Review

* Help Our "Autism Is Treatable" Campaign

BRIEF COMMENTARY

* Bang For the Autism Buck

EVENTS

* The Power of 1.5 Political Autism Conference, Washington,

DC April 21 - 23

TREATMENT

* Show Promising Single-Drug Therapy For Hard-to-Control Epilepsy

* Atkins Diet May Help With Intractable Epilepsy

* Doctors Study Brain Surgery As Treatment of First Resort

ART

* M.I.N.D. Institute Shares Expressive Art Collection Through New Book

ADVOCACY

Congress’ Unfinished Business at the End of 2003, Easter Seals Review

[From the Easter Seals Legislative Action Newsletter - Advocacy News for Friends of Easter Seals.]

Congress finished the 2003 legislative session in early December and returned home for the holidays without finishing work on several bills that are important to Easter Seals and people with disabilities. Members of Congress will return to Washington, D.C. in January with a full agenda of unfinished business. The President will outline his priorities for 2004 in his State of the Union address in late January. 2004 is likely to be a busy year! This month's newsletter includes an update on some of the issues we asked you to contact Congress about this year.

ge

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* * *

Help Our "Autism Is Treatable" Campaign

The Autism Research Institute Needs Our Help

>From Bernard Rimland, Ph.D.

As you have read in the many media reports of the so-called "Autism Summit," (a meeting in Washington DC in late November), the Federal Government and several multi-million dollar autism groups hope to be able to develop some effective treatments for autism in 5 to 10 years.

NONSENSE! We need to tell them, and the media, and the tens of thousands of families of autistic children who don't know about our Defeat Autism Now! procedures, that many effective treatments are available NOW. If your child has recovered from autism, or improved dramatically, as a result of our Defeat Autism Now! project, and you would be willing to speak to the media about your child's recovery, WE NEED YOUR HELP.

The Autism Research Institute has begun compiling a master list of families throughout the United States who are willing to talk to the media about their child's recovery. Our press release announcing our "Autism IS Treatable" campaign will go out in early 2004 to both the major media (the national television networks, the New York Times, USA Today, Newsweek, Time etc.). as well as to many hundreds of local TV stations and local newspapers. We hope to be able to give local reporters (as well as national

reporters) the names and phone numbers of families -- and physicians -- who are willing to be interviewed for television, newspaper and magazine reports.

BRIEF COMMENTARY

Bang For the Autism Buck

>From the Editor and Publisher of the Schafer Autism Report

Next year begins the eighth year of publishing of my newsletter. For the internet, anything that’s been around that long is ancient. Indeed, this is one of the first daily publications on the internet, non-commercial or otherwise (we preceded the New York Times daily presence here by two

years.) During this time, we have been an avid supporter of any group committed to the cause of autism research. We have promoted fundraising events of virtually every major autism research organization, including those of the NIH. However, there has been one autism research organization that has consistently been at the vanguard of practical research, producing more results for the improvement of the lives of our children above all the others. To date, this organization has touched more families, helped recover more children from autism than all the others combined. That organization is Dr. Bernard Rimland’s Autism Research Institute.

- Lenny Schafer, Izak, Tessa and Laurel’s dad.

* * *

EVENTS

The Power of 1.5 Political Autism Conference, Washington, DC April 21 - 23

[From a press announcement by Unlocking Autism.]

In April 2004 in Washington, DC Unlocking Autism, together with Cure Autism Now, GRACE Foundation of New York, The Dan Marino Foundation, and Talk Autism, will host an energetic Political Autism Conference (PAC). This conference is designed to equip parents and advocates from across the country by giving them the necessary tools and education to bring about political change for the issues of autism. The objective is to review the political process at the national level so that attendees can go back to their states and hometowns with confidence to affect change at a local level.

We have always believed that there is great power in this community in our grass roots that is simply unharnessed. During a year as politically important as 2004 will be, we believe this is a terrific opportunity for all of us to shine and lead the whole autism community in a loud ground swell to let our political officials know that we have a huge voting block that is a force to be reckoned with now.

On Wednesday, April 21st attend the "Kick Off" event with a Rally and Press Conference that will take place at 3:00 on the Mall. During this time our Open Your Eyes picture boards, which will be approximately five football fields in length, will be on display.

Immediately following the Rally and Press Conference, The Dan Marino Foundation will be hosting a "Kick Off" Reception at the Capitol. VIP seating at the Press Conference and Rally and admittance to the "Kick Off" Reception will be exclusive to Members of Congress, Conference Sponsors and Conference Attendees.

Thursday and Friday speakers will address our basic political system and how it works, current and upcoming national legislation, do's and don'ts for working with Congress, tips on writing and lobbying a bill, establishing an effective and lasting working relationship with congressional leaders and their staff, how to hook a story in the media, how to shape your child's educational program now for the adult that they will become and what you can do once you get back home.

The conference will focus on two pressing current Federal level

issues: Education and Funding for Research.

Delegates will learn how to make politics work for the community in the morning sessions and then carry that knowledge with them to Capitol Hill in the afternoon. On both Thursday and Friday, attendees will canvas Capitol Hill meeting with the offices of Members of Congress from their state.

The conference will seat a maximum of 500 people. The conference will be open to 10 delegates per state.

By dividing the conference evenly by state, our hope is also that each state will develop a strong network of parents that will receive the tools they need to make change within their communities, state and nation on an ongoing basis. Ten people in every state asking for the same exact thing from every congressman and senator on the same day, all presenting the same literature is a powerful thing for the autism community.

Again, only 10 delegates from each state will be accepted on a first come first serve basis. We highly recommend that you not delay registering if you want to be guaranteed a seat. If you are notified that your state is full, you can choose to be waitlisted and will be notified of seating after February 15. General seating will be opened on February 16, for any remaining seats at states tables who are not full.

The conference will be held at the DoubleTree Hotel in Crystal City, VA. This is a beautiful, full service hotel with many amenities including an indoor swimming pool for families to enjoy, restaurants, and dance club with a full, clear view of DC and its monuments, a beautiful Ball Room our conference will take place in and an incredible room rate of only $99 for conference participants. It is located 2 blocks from a metro station and across from the Pentagon Mall. To reserve your room call 866-999-VIEW OR DIRECTLY at 703-416-4000 and tell them you are with Unlocking Autism.

Conference Registration is only $275 and includes exclusive admittance to the "Kick Off" Reception, Conference attendance, Breakfast and Lunch on Thursday and Friday, an official Political Autism Conference T-shirt and all the materials and tools you will need to carry out the mission and goals set before you.

Be a leader. Do something. Make it happen.

Speakers And Topics Include:

Beth Clay, President, BC & A International, "Do's And Don'ts on the Hill"

Bill Davis, UA Pennsylvania State Rep, "There is Safety in Numbers!"

Barbara Loe Fisher, President, NVIC - "Focusing Your Grass Roots Activity"

Joe Gambale, President, GRACE of NY, "Why me? Why Grass Roots?"

Lisa Graham Keegan, President, Education Leaders Council, "No Child Left Behind???"

Julio Melara, - President, Time for Action, "The Journey from Good to GREAT!"

Members of Republican National Committee and Democrat National Committee "Calling All Donkeys and Elephants to Rock the 2004 Vote"

Ron Oberlightner, Talk Autism, "Why TALK Autism??"

Shelley Reynolds, President, Unlocking Autism, "For those about to ROCK, we salute you!"

Jonathan Shestack, Vice-President & Treasurer, Cure Autism Now, "Reauthorization of the Children's Health Act means what?"

Stephen Shore, UA Board Member, "Shaping your child’s education for transition to adulthood"

Craig Snyder, Ikon Public Affairs, "Lobbying Do's and Don'ts - What the Federal Government Can Do and What the States Must."

Stuart Spielman, "GIMME A BREAK! Tax breaks for Parents of Kids with Autism:"

and more.......

* * *

TREATMENT

Show Promising Single-drug Therapy For Hard-to-control Epilepsy Two UC Davis Studies

Two studies by physicians at UC Davis Medical Center have found that levetiracetam, an antiepileptic drug typically used in combination with other drugs, is effective as a single therapy for adult and elderly patients. The studies, presented today at the American Epilepsy Association conference in Boston, are significant because single-drug therapy is a much easier course of treatment and may be an option for some 13 million epilepsy patients worldwide who currently use multiple medications to control epileptic seizures.

Epilepsy is a neurological disorder characterized by seizures, which are recurring disturbances in the normal electrical function of the brain. The causes of epilepsy are only partially understood.

"We found that levetiracetam monotherapy can be effective and well-tolerated in adults with new onset and difficult-to-control epilepsy and that most patients were able to remain seizure-free at one-year follow-up," said Taoufik M. Alsaadi, assistant professor of neurology and director of the UC Davis Epilepsy Treatment Center at UC Davis.

The UC Davis study compared the efficacy of levetiracetam at one year to a 6-month study conducted previously at the UC Davis Epilepsy Treatment Center. The one-year study included 30 patients, ages 18-91, with a history of partial seizures over a period of one to 30 years. Six patients began levetiracetam as first-line therapy.

Twenty-four patients converted to levetiracetam monotherapy after failing prior antiepileptic medications, such as phenytoin sodium, carbamazepine, divalproex sodium, lamotrigine and topiramate.

After one year on levetiracetam, 16 of 30 patients (53 percent) were seizure-free. Four patients had more than a 75 percent reduction in seizures. Seven patients experienced more than a 50 percent reduction in seizures. Two patients had more than a 25 percent, but less than a 50 percent reduction in seizures, and one patient had no significant change in the frequency of seizure.

"Most patients who took keppra for six months continued to benefit from the therapy after one year," Alsaadi said. "This treatment shows promise for improving the quality of life for people suffering from epilepsy, but a larger, double-blind study is needed to confirm findings."

In the study of seniors, UC Davis researchers assessed how well patients could tolerate levetiracetam. Elderly patients have increased sensitivity to the effects of antiepileptic drugs. To investigate efficacy and tolerability of the medication, researchers identified 33 patients for a retrospective study. Of those, 15 patients, ages 62 to 92, began levetiracetam either as first-line therapy or were converted to levetiracetam monotherapy after failing other antiepileptic medications. The duration of epilepsy ranged from 1 to 39 years.

Six patients had an identifiable cause to their seizures: three had seizures secondary to head trauma, two experienced strokes and one had seizures resulting from Alzheimer's disease. Researchers noted each patient's seizure type and frequency for two months before and then six months following levetiracetam monotherapy.

Of 15 patients, eight became seizure-free. Three patients had more than a 75 percent reduction in seizures and three patients had more than a 50 percent reduction in seizures. One patient didn't continue with follow-up.

One patient reported dizziness within days after starting levetiracetam, but was able to continue on the medication. No other side effects were reported.

"We found that levetiracetam may be an acceptable choice for the elderly," Alsaadi said. "We didn't see the usual side effects associated with the older antiepileptic drugs."

UCB Pharma, a global pharmaceutical company based in Belgium, manufactures levetiracetam under the commercial name Keppra TM.

The study was funded by the UC Davis Epilepsy Treatment Center.

* * *

Atkins Diet May Help With Intractable Epilepsy

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The high-protein, low-carbohydrate diet that's been proved effective in the general population may hold some potential for helping patients with intractable epilepsy achieve seizure control, according to a very small study presented here December 9th at the American Epilepsy Society 57th Annual Meeting.

These early findings from researchers at Johns Hopkins Medical Institutions, Baltimore, Maryland hold promise. Although the results are preliminary, the Atkins diet is far less restrictive than the ketogenic diet now widely used for patients who suffer from severe seizures, said Eric H. Kossoff, MD, a researcher with the institution's Children's Center.

"This approach may eventually work with adults who are reluctant to go on the ketogenic diet because it is so restrictive," Dr. Kossoff said; and it may ultimately prove beneficial in children as well. The ketogenic diet is widely used to treat children with hard-to-control seizures, and approximately 50% of children who do not respond to anticonvulsant-drug therapy achieve better seizure control when they switch to the high-fat, calorie-restricted ketogenic diet.

In this study, 5 patients between the ages of 7 and 50 were placed on the Atkins Diet for the treatment of intractable focal and multifocal epilepsy. All patients had previously failed therapy, and all had tried 2 or more antiepileptic drugs.

A particularly intractable patient, a 7-year-old female who had 10 to 30 complex partial seizures and hundreds of absence seizures daily, became seizure-free 3 days after starting the Atkins diet. A 10-year-old boy who had several absence seizures per month, became seizure-free after switching from the ketogenic diet to the Atkins Diet for 4 months. On the other hand, a 42-year-old man with Lennox Gastaut syndrome and daily atonic and myoclonic seizures maintained moderate ketosis for 14 weeks, but experienced no seizure reduction. Four patients were able to maintain moderate to large ketosis for periods ranging from 2 to 24 months.

The 5 patients in the study were initially allowed 10 grams of carbohydrates per day -- a higher amount than the ketogenic diet allows -- and 35% of total calories were from protein. The ketogenic diet calls for no more than 10% of calories from protein.

[Study Title: Efficacy of the Atkins Diet for Intractable Epilepsy. Abstract 2310]

* * *

Doctors Study Brain Surgery As Treatment Of First Resort

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Chelsea Henrie first knew something was wrong when, at age 16, she poured cereal into her shoe. "I also stuck my hand in the toaster once," recalls Henrie, now 20 and a student at the University of New Mexico in Albuquerque. "That was the worst thing that happened."

Like 2.8 million other Americans, Chelsea Henrie has epilepsy, a disorder characterized by seizures, or sudden electrical storms, in the brain. Though rarely fatal unless a seizure is severe and prolonged, or occurs while a person is swimming or driving, epilepsy can be a life-wrecker.

But today, Henrie is seizure-free, thanks to a promising kind of brain surgery that some specialists see as a treatment of first, not last, resort.

At a meeting of the American Epilepsy Society in Boston this month, researchers discussed a number of new approaches.

The kind of surgery Henrie had is the focus of a $30 million study at 19 medical centers funded by the National Institute of Neurological Disorders and Stroke. It will determine whether early surgical removal of a small piece of the brain's temporal lobe is better than aggressive treatment with drugs.

The underlying causes of seizures are well-documented: head trauma, infections, genetic defects and problems that occur as a child's brain grows. In women, seizures often strike just before menstruation. Sleep deprivation can provoke seizures, too.

As seen on an EEG, or electroencephalogram, the brain's electrical activity changes drastically during a seizure. Unlike the heart, whose electrical activity normally appears simple and coordinated, the brain normally appears to be chaotic. But during a seizure, brain activity becomes more regular and brain function becomes impaired.

Surgeons have known for years that a hemispherectomy, removing half the brain, can reduce seizures. So in cases where seizures are confined to a smaller region of the brain, the idea is to remove less brain tissue. A pivotal Canadian study published in 2001 showed that surgery to remove an ice-cube-sized portion of the brain was more likely to eliminate seizures than drug therapy. So why not do it sooner? "Most people wait 18 [years] to 22 years to have surgery, partly out of the ... fear of having part of their brains removed, and partly because doctors feel it is an intervention of last resort," says Dr. Daniel Hoch, an epileptologist at Massachusetts General Hospital.

A less invasive surgical approach is implanting a "pacemaker" under the skin on the chest. Wires from the pacemaker are threaded, under the skin, to the vagus nerve in the neck. The Vagus Nerve Stimulator, which is made by Cyberonics Inc. and costs $15,000, is programmed to fire for 30 seconds every five minutes or so.

When it fires, it stimulates the vagus nerve, which transmits the signal to the brain, yielding good seizure control in more than a third of the cases and at least some relief in another third.

Scientists are also working on a skull implant device from NeuroPace Inc. that would detect abnormal brain activity before it becomes a seizure, then stimulate the brain to abort it.

A lower-tech approach is the ketogenic (or low-carbohydrate, high-fat) diet, which allowed some children in a study at Johns Hopkins University to reduce their medications.

Increasingly sophisticated, dual-action medications such as Zonegran, Topamax, Lamictal and Keppra can also help by simultaneously decreasing brain excitation and boosting the brain's dampening signals. Traditional medications treated one symptom or the other.

But for many people, the ultimate answer might be surgery, sooner rather than later. John Davies, 60, an accountant who lives in Salem, Mass., endured decades of seizures before having brain surgery 1 1/2 years ago. "I haven't had an attack since," he says.

Judy Foreman is a lecturer at Harvard Medical School.

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* * *

ART

M.I.N.D. Institute Shares Expressive Art Collection Through New Book

Newswise — The walls of the UC Davis M.I.N.D. (Medical Investigation of Neurodevelopmental Disorders) Institute are graced with art created by children and adults with autism and other neurodevelopmental disorders -- the same disorders that are the subject of medical research under way at the institute. To give others a better understanding and appreciation for the unique talents of individuals with neurodevelopmental disorders, the UC Davis M.I.N.D. Institute is sharing this very special art collection with the release of a book titled, "Art of the M.I.N.D." The book captures the talents of these creative artists of all ages, from throughout the world and is now available to the general public.

The book's 56-piece art collection includes pencil drawings, watercolors, and oil paintings created by 36 artists ranging in age from 5 to 86 years old and includes short feature stories on each artist, composed with the assistance of the artists and their families. The majority of the selected artists have autism or Asperger's syndrome, a higher functioning form of autism. Some of the artists have learning disabilities, including severe dyslexia, and a few have been identified as being in the rare category of autistic savants. These individuals demonstrate an exceptional level of skill and understanding in a particular area -- in this case, art.

The UC Davis M.I.N.D. Institute's staff launched an international competition for artwork from children, adolescents and adults with autism and related disorders. Two artists from the Sacramento-area, Wayne Thiebaud and Karen Fenley, along with the UC Davis Medical Center art advisor, Susan Willoughby, and one of the founding fathers of the M.I.N.D. Institute, Chuck Gardner, collaborated to select the entries.

"Art is a beautiful form of communication and for many individuals with autism who live in utter isolation from the rest of the world, it is one of the few ways they are able to be brilliantly expressive," said Chuck Gardner, one of the founding fathers of the M.I.N.D. Institute and the parent of an autistic son named Chas. "One of my favorite pieces of the collection is Reed Feshbach's depiction of getting a haircut, something that used to be traumatic for my son. Two of the prominent details in the piece, a buzzing bee and an exit sign, remind me of how much Chas wanted to escape from the situation."

Another artist with autism, Christophe Pillault from France, is a severely disabled artist who is unable to talk, walk, feed himself or even control the muscles in his fingers, so he cannot hold a paintbrush. However, his desire to create is so strong that he improvises - he applies paint to the canvas directly with his hands and signs the work on the reverse with a fingerprint. More amazing stories like Christophe's can be found in this book.

Inspired by five Sacramento-area families wanting to help their children live full lives, the UC Davis M.I.N.D. Institute brings together parents, educators, community members, physicians and scientists in fields as diverse as molecular genetics and clinical pediatrics, once separated by invisible barriers but all passionate in their quest to find answers. The UC Davis M.I.N.D. Institute offers families with children who have neurodevelopmental disorders renewed hope in unraveling the mystery surrounding Autism Spectrum Disorders, fragile X syndrome, learning disorders, mental retardation and other neurodevelopmental disorders.

"Art can be a transitional object, something that bridges our inner experience with the outside world and in doing so provides connection, understanding and soothing," said Dr. Robert Hendren, executive director, UC Davis M.I.N.D. Institute. "The art collection inspires those of us working here to connect research with humanity, to find new understandings of and treatments for neurodevelopmental disorders, and to ultimately find cures."

_______________________________________________________

PROMOTE YOUR MEETINGS, CHAPTER OR CONFERENCE

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In the Largest, Widest Read "The Autism Calendar"tm

NOTE CALENDAR DEADLINE DEC 24 FOR JANUARY UPDATE

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Edward Decelie Debbie Hosseini Richard Miles Ron Sleith Kay Stammers

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