AAMR F.Y.I.
April 2004, Vol.4, No.4

Visit www.aamr.org/FYI/ to access current and past issues of this monthly newsletter.

Dear AAMR Friends and Colleagues:

IN THIS ISSUE:

GENES IN THE NEWS: RESEARCHERS IDENTIFY NEWLY RECOGNIZED TYPE OF MENTAL RETARDATION, AND A NEW GENE IS ASSOCIATED WITH RETT SYNDROME
Researchers at the Beth Israel Deaconess Medical Center at the Harvard Medical School have identified the gene responsible for a newly recognized type of mental retardation. The findings appear to offer insights into human brain development and the evolution of human behavior. Read more at http://www.bidmc.harvard.edu/?node_id=1000&mainFrameSrc=/tools/newsnow/pr_out.asp?pr_id=526

Scientists at The Hospital for Sick Children, the Centre for Addiction and Mental Health, and the University of Toronto have identified an alternate form of the disease gene and protein for the neurodevelopmental condition Rett syndrome. Rett syndrome is a major cause of mental retardation among girls. Read more at http://www.sickkids.ca/mediaroom/custom/rettsyndrome04.asp

THE SUPPORTS INTENSITY SCALE: HOW WAS IT DEVELOPED AND STANDARDIZED?
Visit www.aamr.org to read an article on how the authors and hundreds of professionals across the country helped standardize the new Supports Intensity Scale (SIS) and ensure that it become a reliable tool for determining support needs of persons with intellectual disabilities. The SIS was published by the American Association on Mental Retardation (AAMR) in December 2003.

You can learn more about the Supports Intensity Scale at a half-day workshop at the AAMR Annual Meeting in Philadelphia on June 4, 2004. Read more details at http://www.aamr.org/Events/2004/workshops_des.shtml#11

RESEARCHERS IDENTIFY SPECIFIC AREAS OF THE BRAIN LINKED TO AUTISM
Using advanced imaging technology, a research team headed by Dr. Martha R. Herbert of the Massachusetts General Hospital and the Harvard Medical School in Boston, has identified specific portions of the brain's white matter that are abnormally large in children with autism and developmental language disorder. Read more at http://www.massgeneral.org/news/releases/032204herbert.html

Read an abstract on the discovery in the April issue of the Annals of Neurology at http://www3.interscience.wiley.com/cgi-bin/abstract/107639602/ABSTRACT

AGING AND DEVELOPMENTAL DISABILITIES: SPECIAL ISSUE OF THE AMERICAN JOURNAL ON MENTAL RETARDATION NOW ONLINE!
Developmental disabilities last a lifetime and the process of aging is as significant to persons with disabilities as it is to the society at large. Contemporary research in the area of aging and developmental disabilities is now featured in a new, special issue of the American Journal on Mental Retardation (AJMR) titled “Aging and Developmental Disabilities: Life Course Trajectories” (published March 2004).

To read an introduction by Dr. Marsha Mailick Seltzer, guest editor of the special issue visit http://www.aamr.org/Reading_Room/pdf/AJMRspecialissue.pdf

Click here to purchase a single copy issue of the special issue online. To order over the phone, call 1+(785) 843-1235, Ext. 248 or email AJMR@allenpress.com

To read an abstract on all the articles in the special issue, visit http://aamr.allenpress.com/aamronline/?request=get-toc&issn=0895-8017&volume=109&issue=2

LATEST NEW FREEDOM INITIATIVE PROGRESS REPORT TRACKS GOVERNMENT PERFORMANCE IN FOUR AREAS OF DISABILITY SERVICES
The White House has released the 2004 Progress Report of the New Freedom Initiative (NFI), President Bush’s blueprint for eliminating barriers to the full integration people with disabilities in America. The NFI was launched in 2001. The current progress report highlights the government’s accomplishments in four areas of disability services: increasing access through technology, expanding educational opportunities for youth with disabilities, integrating Americans with disabilities into the workforce, and promoting full access to community life.

Read the report online at http://www.whitehouse.gov/infocus/newfreedom/newfreedom-report-2004.pdf 

READ RESULTS FROM SURVEY ON ORGAN TRANSPLANTATION AMONG PERSONS WITH DISABILITIES
There is a dearth of information on access to organ transplantation among persons with disabilities. The National Work Group on Disability and Transplantation (NWGDT) conducted a national survey on the issue of organ transplants among persons with disabilities as a first step to remedy this situation. AAMR is a part of the NWGDT, a volunteer group made up of families, and disability and medical professionals from the organ transplantation field.

Read the survey results online at http://www.aamr.org/Reading_Room/pdf/Organ_transplant_031504.pdf 

THE POWER OF ONE CAMPAIGN UPDATE—CONTRIBUTIONS, VISION, AND PURPOSE 
In addition to contributing a weekend of time and energy, many of the AAMR leaders at the Mid-Winter Board meeting earlier this year responded to an anonymous $1000 challenge donation to the Power of One Campaign with their own contributions, raising a total of $4500 in pledges. Read more on this initiative from AAMR Vice President Valerie J. Bradley and William Gaventa, national coordinator of the Power of One Campaign at http://161.58.153.187/About_AAMR/power_of_one/sucess.shtml

AAMR F.Y.I. is compiled by Anna Prabhala, Editor.
Please submit comments, suggestions, tips, and news to annap@aamr.org

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