TCRC Tri-Line Newsletter - Winter 2008 - Tri-Counties Regional ...

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NEW DEVELOPMENTS IN PHARMACOTHERAPY FOR AUTISM by Dr. James O’Hanlon, Psychopharmacologist Research for developing safer and more effective treatments for developmental disorders is a constant, ongoing process. Current treatments were mainly developed to minimize disruptive symptoms but in the future a better understanding of innate deficits should lead to treatments that increase individual abilities. Emerging trends in research for achieving this goal are apparent in the list of ongoing clinical trials provided by National Institutes of Health (NIH) at their website, www.ClinicalTrials. gov. The list, stratified by sponsor, disorder and intervention, includes all federally funded clinical trials and most supported privately in the USA with a smattering of those in progress elsewhere. Trials concerned with autism have quadrupled over the last five years until now, 132 are in progress or completed but not yet reported. Most (74%) deal with testing the efficacy of particular treatments: • Pharmacological (42%) • Behavioral (10%) • Dietary restrictions or supplements (8%) • Acupuncture/acupressure (5%) • Hyperbaric oxygen (4%) • Other (5%) Pharmacological trials may be further divided between the majority dealing with well-established drugs like Risperdal and Prozac and a minority concerning novel agents that have shown promise in preliminary studies. Some among the latter may emerge as pharmacotherapy of the future and are discussed here for that reason. SOME INNOVATIVE STRATEGIES MINOCYCLINE There is evidence that an innate neuroimmune reaction causes chronic inflammation in the autistic brain. Investigators at National Institute of Mental Health (NIMH) are currently testing the effects of minocycline, an antibiotic with strong anti-inflammatory properties, in children with autism with the hope of achieving global behavioral improvement. INTRANASAL OXYTOCIN Intranasal oxytocin is being administered to children with autism in a trial at Mount Sinai School of Medicine. Oxytocin is a naturally occurring brain hormone that promotes social bonding in all mammalian species and a pilot study suggested that it might have the same effect in autism. D-CYCLOSERINE D-cycloserine was developed for treating tuberculosis. Then it was discovered that the drug attenuates excitatory neurotransmission in the brain. Preliminary studies have shown its benefit in schizophrenia and also autism where it reduced social withdrawal. Two trials with d-cycloserine, led by world-class experts in autism, Drs. David Posey and Chris Mc- Dougle, are underway at Indiana University. N-ACETYLCYSTEINE Posey and McDougle are also conducting a study with N-acetylcysteine (NAC), which increases glutathione, the body’s primary defense against toxic free radicals (‘oxidative stress’). The causes, effects and extent of oxidative stress in the autistic population are a matter of hot debate but there is reasonable evidence that it causes immune abnormalities, associated with deficient glutathione, in a sizable proportion. ARICEPT, RAZADYNE AND EXELON Drugs that increase the acetylcholine neurotransmission in the brain by inhibiting the enzyme that inactivates the transmitter – Aricept, Razadyne and Exelon – are 1st-line therapy for Alzheimer’s disease. Small scale studies with each of the drugs have provided an indication that they improve receptive and expressive language in children with either autism or Down syndrome. The manufacturer of Aricept has now launched an extensive trial series with the apparent purpose of registering the drug for the indication of cognitive dysfunction in children with Down syndrome. Controlled trials with Aricept and Razadyne for autism are also being conducted at NIMH and the University of Medicine, New Jersey, respectively. PERSON CENTERED THINKING TRAINING “Introduction to Person Centered Thinking” is a 10-hour training that teaches a set of ideas, skills and strategies to assist individuals who use services to achieve greater control and influence over their lives leading to positive community participation and value. There are several upcoming opportunities to attend this training. Trainings are hosted by different agencies and all trainers use a standard curriculum that has been approved by the Learning Community for Person Centered Practices. *Training dates, times and locations are subject to change. Training Dates* (Must attend all dates in series) Time Location For more information and to register contact: 2/4, 2/11, 2/18 1:00pm-4:00pm TCRC, San Luis Obispo Office 2/12, 2/19, 2/26 9:30am-1:00pm Santa Maria, Grogan Park Assembly 2/17, 2/24, 3/3 9:30am-12:30pm Santa Maria (location to be announced) 4/9, 4/16, 4/23 9:30am-1:00pm Santa Maria, Grogan Park Assembly 3/6, 3/13, 3/20 9:30am-1:00pm Ventura County (location to be announced) Karen Moore 805-782-8890 ext 16 karenmoore@pathpoint.org Lauren Connelly 805-489-9472 ext 201 Karen Moore 805-782-8890 ext 16 karenmoore@pathpoint.org Lauren Connelly 805-489-9472 ext 201 Vi Nguyen 805-884-7206 vnguyen@tri-counties.org 4 | tri-line WINTER 2008
(Dis)ability Through Education and Action by Jennifer L. Dwyer, Peer Advocate, San Luis Obispo Being a participant in Partners in Policymaking®, is a little like looking at my favorite painting. At first, as people from all over central California file into the large conference room of the Bakersfield Inn and Suites, the larger picture remains out of focus; if looked at too closely, it appears to be a mass of unconnected, slightly dizzying dots. However, over time, the people that began the journey as virtual strangers, have, through the experience they shared, gained a little perspective. United in a common purpose, like any family, we gathered for a weekend that, while challenging, felt an awful like a Sunday in the Park. “Partners in Policymaking has given me the practical tools to use to speak up for those who cannot speak for themselves,” Esther Bautista, mother of 5-year-old Bethany, a person served by Tri-Counties Regional Center, Santa Maria, said. “It’s high time that someone speaks out for the injustice they have suffered and work to promote a more accessible world.” Partners in Policymaking (PIP) is an internationally recognized training program designed to empower people with disabilities, their families, and other members of their immediate support network. Through a series of eight weekend-long seminars, participants learn about the contemporary lives of the one in five Americans that, like their loved one, find themselves disabled in some way. They also learn about the historically discriminating treatment that spurred the earliest disability rights’ activists into action. Like those who came before them, it is believed that Partners in Policymaking graduates, once armed with the educational tools, will actively work to change the perception of a “life with a disability.” The program, funded by a 2006 State Council on Developmental Disability grant, is intended to teach those with disabilities—and the people who love, live, and work with them—how to advocate for individual, social, and legislative change. “Half of our participants are ‘self-advocates’, or those who have disabilities themselves,” Linda Landry, of the Family Resource Centers Network of California (FRCNCA) said. “The other half is made up of those who love and [emotionally and physically] support them.” Jennifer Dwyer receives Graduation Certificate time in 13 years, on October 18, the 40-member class of 2008 graduated from the program. Parents, personal assistants, and selfadvocates received diplomas and lapel pins as a symbols of their collective achievement. “Through education, we have become more aware of how to properly demonstrate respect toward people with disabilities,” Denise Martinez, a self-advocate from San Luis Obispo, said. Monthly, participants—affectionately dubbed “PIP peeps” by me—converged upon the Doubletree. Coming from as far away as Madera and San Mateo, participants did everything from learning about the appropriate use of assistive technology devices, to staging a mock legislative hearing at the state Capitol. With over 100 hours of learning behind the newly graduating class, the energy in the room was one that, thanks to the knowledge gained, removed the ‘dis’ in “disability”, and shifted the focus to abilities, instead. “This graduation represents another class of advocates ready to act on issues important to the disabilities community,” Jim Lockwood, coordinator of PIPCA, said. “Next year, Partners in Policymaking California will be training our third class of advocates in the southern California region,” he said. “This will mean that, in three years, PIPCA will have trained more than 100 advocates from across the state of California.” Participants’ expenses-about $8,000 each-included lodging and attendant care costs, if needed. The California State Council on Developmental Disabilities funds the entire cost of the program through a grant to the aforementioned members of the California Collaborative. The Collaborative organizations commit staff time and resources to the oversight and implementation of the Partners in Policymaking program. Originally modeled after a curriculum generated by the Governor’s Council of Minnesota 21 years ago, Partners California has not had an easy road. Thanks to the dedication of many organizations — including People First of California, the American Association of Intellectual and Developmental Disability, and the Family Resource Centers Network of California— for the second Partners in Policymaking Graduating Class WINTER 2008 tri-line | 5
Page 1 and 2: A Publication of Tri-Counties Regio
Page 3: A Community Works Together by Dan V
Page 7 and 8: Ventura County Rainbow Connection -
Page 9 and 10: Advocating for My Child and Others
Page 11 and 12: awards TCRC staff news Please note

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