|
|
|
| Home > News > The Special Ed Advocate News Alert, National Autism Awareness Rally in Washington DC, April 3, 2000 |
|
|
WHAT? Rally for National Autism Awareness WHEN? Saturday, April 8, 2000, 9 a.m. to 6 p.m. (rain or shine) WHERE? Washington D.C., on the Mall between 3rd and 4th Streets (details follow). WHY? To increase knowledge and awareness of autism; improve educational and treatment methods; secure additional funding of research into effective treatments; search for a cure for this disorder. (See related story "Experts: Autism May Not Be Developmental Disorder" from PR Newswire below) WHO? The Rally is co-sponsored by "Open Your Eyes to Autism" & "Hear Their Silence" (ARK). (For more about this grassroots advocacy group, read "The Story Behind the Story" below) SPEAKERS: Attorney activist Pete Wright will speak at the Rally, along with many others (list follows). Speakers include medical researchers, autism specialists, parent activists, and Congressman Dan Burton. * Congressman Dan Burton(NOTE: The speaker list is subject to change.) FOR MORE INFORMATION ABOUT THE RALLY, go to http://www.ark-inc.org/rally_information.htm The Rally is a grassroots event; there is no fee. Please register for the Rally (this will help the sponsors plan) at this page - http://www.ark-inc.org/registrationform.htm CONGRESSIONAL HEARINGS (April 6, 2000) On Thursday, April 6 at 10:30 a.m. (EDT), the U.S. House of Representatives Committee on Government Reform will hold an daylong hearing called "Autism: Present Challenges, Future Needs -- Why the Increased Rates?" (for more about "increased rates" see the PR Newswire story below) At this hearing, the first of its kind to dedicate an entire day to the subject of autism, Congressmen will hear from parents, researchers, government officials, and health professionals. Witness panels include "Autism: A Parent's Perspective", "Autism - The Vaccine Connection", and "Autism: Treatment Options and Research ". The hearing will begin at 10:30 am in Room 2154, Rayburn House Office Building, Washington, D.C. People who will be in Washington on Thursday, April 6, before the April 8 "Hear Their Silence Rally" are invited to attend the hearing. For those who will not be in Washington, the hearing will be broadcast from start to finish live on the Internet at (NOTE: To hear and view the hearing, you will need Real Player. You can download Real Player at the same site, but you should download the program before the hearing begins.) If you want to see the hearing live on television, you must let C-SPAN know. You can ask them to televise the hearing by sending them an e-mail (events@c-span.org) or by calling 202-737-3220. AUTISM RALLY:
THE STORY BEHIND THE STORY "Last August I put out my first "call to action" regarding the autism awareness quilt scheduled to be completed in time for display in Washington, DC at the April 8, 2000 rally." "By the end of the day on March 1st, the official deadline for inclusion in the Washington bound quilts, I had recorded over 1,000 squares." "Individual quilt units have been constructed in groups of 25 squares. Forty completed units laid out end-to-end will cover 6 ft x 240 ft in length. A thousand squares have been sewn together to commemorate those who have been diagnosed along the autistic spectrum." "The quilt imagery ranges from photo-transfers of our beautiful children's faces and artwork to elaborately constructed traditional squares, with every mode of artistic-autistic expression in between." "Together, we have taken action, but much action is required still." "Scientists tell us that communication is at the core of what we consider to be distinctly human. If we cannot communicate, whether through sign, symbol or verbal language, we are in danger of losing our very humanity. "Lack of a communicative system before the age of 6 is a recognized predictor of a poor lifelong outcome. Autism takes away our human potential; in this sense, it is as 'deadly' a disorder as cancer or AIDS." "Every face represented . . . every handprint and mark on this quilt, reminds us of the magnitude of this disorder." "Autistic spectrum disorder is the third most prevalent childhood disease, affecting as many as one in every 250 children in our nation. "Why do we still know so little about this epidemic in our midst? Why have the many myths of autism persisted for so long?" "The model of autism as a rare, neurological, untreatable disorder is sorely outdated." "Autism is neither rare nor limited to brain dysfunction. We are faced with an epidemic and the only conscionable choice is to fund research now. We need to understand the biological parameters of this disorder. A thorough clinical investigation of autism must be a national priority." "Towards this end, we fully endorse the concept that has been promoted by patients suffering from other progressive diseases. In an effort to speed the development path of potentially useful therapies, we are willing to absorb some degree of informed risk." "Time is the enemy. We demand aggressive policy driven measures that will speed the route to newer medically based treatments. The clock is ticking; we need action today." "I hope that the din created by the silent "voice" of our many children with autism will be deafening on April 8, 2000." "The autism quilt is a loving testimony to their presence." Nancy LeGendre (still stitching . . . ) More information about this project is at ARK site - EXPERTS: AUTISM
MAY NOT BE A DEVELOPMENTAL DISORDER
PRNewswire - A statistical study commissioned by MAT: Medicine for Autism Today projects that the population of children with special needs/learning disabilities will be growing at a rate three times faster than the general pediatric population by next year. This means nearly six (6) million children, or ten percent of the population between the ages of 5 and 19, will receive special assistance during their formative years and beyond. Autism is the fastest growing of these classifications, conservatively accounting for a 900% (nine hundred percent) increase in the ten year study period (1992 to 2001) according to US Department of Education data. It is now generally recognized that the incidence of autism has increased at least twenty-fold in the last decade. "With such compelling data, it is time to focus attention and funding on what can only be called an epidemic,'' says Dr. Michael Goldberg, a pediatrician on the clinical teaching staff of UCLA and President of the NIDS Research Institute, an international panel of medical experts studying immune and brain function in children with autism and other neuro-cognitive dysfunctions. "If autism were purely behavioral or genetic, we would not be witnessing this dramatic rise in the number of cases, particularly those children that experience a period of normal development prior to the emergence of symptoms. It is scientifically impossible to have an epidemic of a developmental or genetic disorder of any type. Clearly something is very wrong here,'' he concludes. There is strong anecdotal evidence that a large subset of children with "acquired'' autism, where symptoms do not emerge until after the child's first birthday, suffer from a disease process that elevates their immune system to a dysfunctional level. "We are calling this epiphenomenon 'NIDS' -- Neuro-Immune Dysfunction Syndromes,'' continues Goldberg. "With sufficient resources, it is entirely possible that medical treatments can be developed in time to help many of the more than 500,000 individuals currently diagnosed with autism, pervasive developmental disorder (PDD) and other related 'neuro-immune'' conditions." "It is time to recognize that these children may be suffering from a potentially treatable medical disease and need our clinical research efforts now,'' says Dr. Jeffrey Galpin, Associate Professor at the University of Southern California and Infectious Disease specialist who has championed several therapies for severe neurological disease related to AIDS. "An increasing number of studies in national journals are linking the regulation of the immune system with nervous system diseases such as Multiple Sclerosis and even Alzheimer's Disease. Cognitive function, memory, and fatigue may all be controlled by small molecule immune modulators. Current treatments need to be modified if we confirm that this finding applies to children with autism,'' added Galpin. "The continued exploration of this NIDS theory and the potential etiologies linked to it, is a door we must walk through to supplement the current behavioral and genetic research on autism if we expect to change the future of this generation of children,'' concludes David Gregory, Executive Director of the NIDS Research Institute. "Right now, our only hurdle is funding and we hope the nation recognizes that we can change the future of these children if it responds as it has with other diseases like cystic fibrosis, multiple sclerosis, Down's syndrome and SIDS, all of which are less prevalent than autism. The time is now!'' MAT or Medicine for Autism Today is a parent-sponsored support organization dedicated to identifying treatment options for autism. MAT announced its intent to merge with the NIDS Research Institute and established an immediate fund-raising goal of $750,000 to develop a scientifically-sound neuro-immune database for children with NIDS-Autism. MAT also plans to fund studies to evaluate the efficacy of immune modulating agents in the treatment of NIDS-Autism. Discussions have already begun with several interested pharmaceutical companies. Sources: FEAT News: http://www.feat.org/ PR Newswire: http://www.prnewswire.com
|
|||||||||||||||||||||||
