FW: ARI News: New Autism Call Center, Medigenesis, Tissue Bank and more

[Guest guest]

Holly Bortfeld wrote: https://www.autismwebsite.com/ari/dan/enewsletter_200706.htm June 2007 In This Issue ARI's New Toll-free Autism Resource Call Center now Open ARI's Director Joins Board of ASA Autism

Research: How Coroners, Medical Examiners can Help An Autism Tissue Bank: Advancing Research Medigenesis: The Library is Open NAA's New

Program Combats Divorce in the Autism Community ARI's Autism Call Center Toll-free resource line now available Too often we hear it: "I heard a few things about the diet, and biomedical approaches, but I didn't know who to call. I wish I had found this sooner and could have helped my child." ARI now offers a toll-free resource line under the leadership of Cale, Grandmother to Wynn - ASD age 12, and Vice President of Unlocking Autism. Callers are provided information, contacts, and access to resources available through the Autism Research Institute. ARI's Toll-free Autism Resource Call Center: 1- ARI's Director Elected to ASA Board ARI's Director, Edelson, Ph.D. was elected to ASA's Board of Directors by the organization's membership in May. Last fall, ARI and ASA announced a partnership to address the autism epidemic. The Autism Society of America was founded by ARI's founder, Dr. Bernard Rimland, Ph.D. in 1965 and is the oldest and largest grassroots organization within the autism community. Dr. Edelson brings to the ASA table, Dr. Rimland's perspectives, goals, and dreams. Both organizations serve distinct purposes and large numbers of families. Alone, they have been effective in their missions: together they are a formidable force. ASA and ARI

will both benefit from the increased resources, support, and diverse opinions and approaches. Dr. Edelson looks forward to serving on the new board, and bringing forward new goals of cooperation. Congratulations to both Dr. Edelson and the ASA. ASD Tissue Donors How Coroners, Medical Examiners can help

Medical examiners and coroners can serve as the critical link to finding the answers to autism. If you work in this field and have suggestions for developing a system for the early identification of autistic individuals that come under the jurisdiction of the medical-legal system, please contact: Dr. Ron Zielke Director, NICHD Bank 1- About ARI 40 Years of Hope and Success The Autism Research Institute (ARI) was founded by Dr. Bernard Rimland and is the hub of a worldwide network of parents and professionals concerned with autism. ARI was founded in 1967 to conduct and foster scientific research designed to improve the methods of diagnosing, treating, and preventing autism. ARI

also disseminates research findings to parents and others worldwide seeking help. The ARI data bank, the world's largest, contains over 40,000 detailed case histories of autistic children from over 60 countries. ARI is proud to be the only autism non-profit to be awarded the coveted 'Four Star Award" by Charity Navigator for sound fiscal management. Our Partners Welcome Welcome to Autism Research Institute's New International E-Newsletter - we hope you find it informative and helpful. Each issue will contain news of cutting-edge research, studies, treatments, testimonials, and news from both the Autism Research Institute and DAN! We are here for you, the families and caring providers that deal with autism every day. That is what drives ARI's ever-growing agenda and what inspires us to publish this newsletter. This newsletter is compiled, written, and edited by ARI parents and it is meant to be interactive: we welcome your input. If you have questions you would like answered, a story you would like to submit, or an idea for something you would like to see addressed, please submit it to us at e-newsletterautism. Contents are reviewed

by ARI staff, as they are putting their name on it, but at ARI we take parent involvement and interaction very seriously. If you are new to ARI or DAN!, welcome to a large family where help and support are close at hand. Sincerely, Dr. Edelson, Ph.D.Director, Autism Research Institute An Autism Tissue BankAdvancing Research through a Compassionate

Contribution and (names have been changed) awoke as they did every morning: to the sound of young children stirring earlier than they really would have liked. But today was different. Call it intuition, gut feeling, no matter, they just sensed that something was horribly amiss. They rushed to the bed of their 18-month-old-daughter, where the nightmare that would never end, suddenly began. She was blue and not breathing. They fought back instant grief as they held onto a tiny thread of hope. grabbed their precious baby and placed her on the floor, attempting CPR while screamed in panic at a 911 operator on the other end of the phone line. Within minutes an ambulance arrived and whisked their lifeless daughter off to the nearest hospital. By the time they arrived, it was all

over; their tiny and precious child was gone. The grief was inconsolable. They were unable to function, to think, to act, to do anything at all besides collapse into utter despair. Most of us can only imagine this unthinkable scenario, but this is a true story. Those who've experienced the loss of a child, or helped a family member or friend to deal with it, understand this is the worst possible moment to make moral, ethical, or altruistic decisions. It's troubling enough to contemplate the passing of our grandparents and parents, let alone one of our children. Many have suffered the loss of a brother or sister in young adulthood, or watched a loved one slowly die of a devastating disease, such as cancer. But nothing prepares us for the death of our own offspring. It is with solemn understanding of the gravity and discomfort of even

thinking about or discussing this issue that ARI asks all families with loved ones with autism, to think about the unthinkable today. We would love nothing more than to live in a world where children didn't die. But, most of us would also love to live in a world where children didn't have to suffer from autism. We all know too well that our reality is much different. It is even because of autism that many of our children are at a higher risk of serious illness, injury, and even death. So, it is with compassion and understanding that we ask you to sit down with your spouse, with your families and loved ones and have a serious discussion about what you might want to do if the unthinkable were to happen. What would you do in that situation if your mind was clear and free from grief? Would you want to take that horrendous moment and make something positive come from it? Many of us choose the "organ donor" option on our driver's license not realizing that if we don't

share that with loved ones, they can override our choice upon our passing. It is critical that your wishes are known and understood by those around you, so they can help you when you need it most.Partnering to Advance Autism Research ARI recently began collaborating with the NICHD Brain and Tissue Bank for Developmental Disorders at the University of land to focus attention on the collection of autism brain and systemic tissues. The NICHD Bank was established in 1991, by the National Institutes of Health to advance medical research by systematically collecting, storing

and distributing brain and other tissues to medical researchers throughout the world. The NICHD Bank is the primary source of autism tissue for researchers. However, the interest in autism research is so great that they have not been able to fulfill all requests for tissue. It has become quite clear over the past five years that autism impacts the whole body, not just the brain. It is clear that the collection of tissue from many organ systems is crucial to the advancement of research into the causes of autism and will eventually help us develop more effective treatments. Our collaboration emphasizes that many of the unknowns of autism can only be discovered by studying the actual tissue from autistic individuals donated after their deaths. This is why it is so important that at a time of a family's loss they contact the NICHD Brain and Tissue Bank to consent to tissue donation that will leave a legacy of their loved one. Prompt action is vital since even a day's delay can

make the tissue of limited value for research. ARI is honored by the opportunity to work closely with the NICHD Bank and wants parents and families to know that we understand the gravity of this request. We know that you are asked daily to make decisions outside the realm of typical parenting. Most of you have had to search for a caring health care provider, make decisions about therapies and treatments, open your home to therapists or providers, deal with schools and special education programs, learn to deal with your child and their devastating condition, and through it all deal with everyday life. The importance of informing your family cannot be stressed enough: If you believe this is important, and feel it is critical to the mission of finding even more affective treatments for those living with autism, please schedule a time with your loved ones and sit down and discuss it. Share the contact information so that others can help you handle

the details if needed. To Learn More:Call Larkins, project coordinator of the NICHD Bank at 1- or or e-mail btbumabumaryland (DOT) edu or visit their Web site at www.btbankfamily.org. ARI thanks you for considering this project and we share with you the dream that someday none of us have to make decisions such as this.We share this heavy burden with our entire autism

family, for all of our children and loved ones affected by autism. Medigenesis.comThe Library is now Open We have recently heard from organizations asking parents to sign children up for their databases while simultaneously adding them to a list of potential research subjects. Many of these organizations, which have appeared on the scene at the 11th hour of the Autism Epidemic, have no history or trust established with parents and families living with autism. In fact, there is a remarkable lack of acknowledgement for the existing body of wisdom in the autism community, as evidenced by the arrogant tone of these appeals, which tend to center on the needs of the organizations collecting the data - rather than children and families living with autism. Basically, the overarching goal is to develop a database from which to pull children for closed studies and experiments

and provide feedback to families en masse eventually - after the data is collected and interpreted to their satisfaction. Parents are tasked with filling out exhaustive forms and - as footnote - these organizations typically claim they are also interested in any "Folk Wisdom" parents may wish to share. At the Autism Research Institute, we don't confuse parents' testimonials, therapy outcomes, recovery stories, medical test results, and real life accounts with "folk wisdom." Folk wisdom is the ancient advice to "never cut your babies fingernails before the age of one, or

they will grow up to be a thief." What parents have been sharing with us for decades is not folk wisdom, but real life stories, compelling recoveries, and thoughtful analysis of treatments and how it affected their child or loved one. When looked at by the thousands, this is compelling science, forming strong hypotheses from which to design further research - not to mention that it provides a lens in which parents can view the autism landscape for answers to the question - who are the kids who are pretty much like mine and what has worked best for them. ARI has been carefully collecting scientific and medical data on children and families for decades. We have invited and welcomed input from families with a serious understanding that no one knows the child better than parents. But beyond that, ARI has used that input to analyze and develop effective treatments. ARI then shares that information with families dealing today with Autism, instead of

dreaming of some future complex genetic discovery. ARI conducts conferences across the United States and beyond. All of our data collection and research is always done with parents and caregivers living on the front lines of the Autism Epidemic at the forefront. ARI now plans to take outreach to a whole new level by partnering with Dr. Sidney M. Baker to develop a new model for capturing data about autistic individuals while protecting their privacy - The Medigenesis Project. What is Medigenesis? It is a

priceless database of information containing the details of individual children's signs, symptoms, environmental exposures, laboratory results and, life events, as well as good, bad or neutral responses to various treatments. Medigenesis is the brainchild of Dr. Sidney Baker. The co-founder and Emeritus Medical Director of ARI's Defeat Autism Now! Project. Dr. Baker says he began creating this system, for empowering people to make informed decisions about their own health, when he was an Assistant Professor of Medical Computer Sciences at Yale Medical School in 1969. The database became a reality with the support of ARI's founder Dr. Bernard Rimland and Director Dr. M. Edelson, whose surveys of parent feedback have been the model for a new way of listening to parents. ARI's vision is one of sharing, empowerment, and education within a community of

respect for individuality and privacy. What can Medigenesis do for our family? While Medigenesis is easy to access and use 24/7, privacy will always be guarded and security our foremost concern. No data will be collected that could be used to identify a given individual. So, if you want to participate in a ground-breaking database that was developed with helping children today in mind, that its very existence is there to help families now, then you need and

deserve Medigenesis. How it works Medigenesis provides you online access to an interface that helps you create a record of your child's data. From there, it offers the immediate benefit of well-organized reports that you can create and share with professionals to efficiently present a full picture of your child.

Such a record helps you view your child's problems from a new perspective and can be of enormous help in presenting the details to professionals interested in treating your child as an individual - not as just a disease label. As our database grows you will also gain near-term feedback from clusters of children who match yours and learn what worked and did not work for them as a guide to options for you child. In addition, you will reap the long term benefits of a system that uses information technology as a 'macroscope' to see otherwise invisibly large or hidden patterns. Imagine having a library card that allows you free and unfettered access to this library at any time of the day or night. Picture being able to find a child or an entire grouping of children that all match the experiences, conditions, or symptoms of your own child. What if out of 30 children that exhibited a similar condition to your child, 28 of those 30 or even eight had reacted positively and improved with a given method of therapy. You would want to know that. You could print out reports from Medigenesis and share them with your medical provider. So, Medigenesis will not just take your survey and information and then leave you sitting by the phone, wondering if you will get a call to participate in some study, never seeing the results of the compiled data. Instead, it offers information in real time: it is an interactive environment of sharing and support. To Register: To learn more about the Medigenesis project, see http://www.autism.com/medigenesis/ and enter your e-mail address. If you have any concerns or questions, please e-mail us at infomedigenesis or visit www.medigenesis.com for more information. NAA Launches National Program to Combat ASD Community's Divorce Rates Earlier this week, the National Autism Association launched its new Family First program, a comprehensive national marital counseling program to combat divorce rates within the autism community. The new initiative offers couples with autistic children immediate phone access to marital counseling at a discounted rate, and a grant program for those unable to afford it. Many couples have a difficult time going to counseling due to limited childcare options," says parent and NAA Executive Director Rita Shreffler. "The main goal of Family First is to keep families together," says

NAA Board Member and parent Lori McIlwain. "For many, this could mean providing a stronger foundation for their children to progress, two-income potential, and less stress on one parent." Learn More on the NAA Web site Editor: Kendra Pettengill Technical Support: Fulton Olds Forward email Autism Research Institute | 4182 Ave | San Diego | CA | 92116

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