Archive for July, 2007

Glimpses from the Seattle Strollathon for Rett Syndrome research

The recent Strollathon in Seattle raised a reported $15,000 for Rett Syndrome Research. We thought you would enjoy seeing a glimpse of that event through first time participants. Lauren and Adam Cramer raised $1,800! Kudos to all event organizers and participants.

If you have news from your Rett Event that you’d like to share, please drop us a note.

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NASCAR provides Rett Family with new vehicle

We read about this wonderful and inspiring story from a discussion group the other day and wanted to share it with others in the Rett Community. The story made the pages of the Boston Globe and will be featured in an episode of a television series called NASCAR Angels this fall.

SourceBoston Globe, 08 July 8, 2007

Summary

Chris Ayer of Concord, N.H., is such a loyal NASCAR fan that for 17 years, he has used his vacations to work at the New Hampshire International Speedway in Loudon. Recently, the sport repaid him in a way he never expected.

Ayer’s family was selected by “NASCAR Angels,” a nationally syndicated television show that solves struggling people’s transportation woes, to have their 1991 Chevrolet Astro van renovated. With 212,000 miles, it had a worn interior, body rust, and repair needs. And, it couldn’t fit both the scooter used by Ayer’s wife, Ellen, who has muscular dystrophy, and the wheelchair used by their only child, 17-year-old Danni, who has Rett syndrome. The van also needed a tie-down lock system for Danni’s wheelchair.

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U.S. Department of Education Reports Show Continued Need For Improvement in Implementation of IDEA

For the first time, the U.S. Department of Education has issued determination letters on implementation of the Individuals with Disabilities Education Act (IDEA) to each state education agency for Part B and to each lead agency for Part C. The determinations, required under the statute, are part of the on-going efforts to improve results for children and youth with disabilities.

As amended in 2004, the IDEA requires the Secretary of Education to make an annual determination as to whether each state is meeting the requirements of the statute. Under the IDEA each state is required to have in place a State Performance Plan (SPP) that evaluates the state’s efforts to implement the requirements and purposes of Parts B or C of the IDEA, and describes how the state will improve its implementation of these programs. Each state must then submit an Annual Performance Report (APR) detailing its progress in meeting the targets it established in its SPP.

The Department approved states’ SPPs in 2006 and States submitted their first APRs under the SPPs in February of 2007. The letters the Department issued announce and explain the first determinations made under these new requirements of the IDEA.

The IDEA details four categories for the Secretary’s determination:

Meets the requirements and purposes of the IDEA

Needs assistance in implementing the requirements of the IDEA

Needs intervention in implementing the requirements of the IDEA

Needs substantial intervention in implementing the requirements of the IDEA

Data and criteria used to make determinations:

To make the determination for each Part B and Part C program, the Department considered the state’s APR, information obtained through monitoring visits, and any other public information. The following factors were considered for each state’s determination under each program:

For each compliance indicator in the APR, whether the state demonstrated compliance or that it corrected noncompliance in a timely manner, or if it did not demonstrate compliance, nonetheless had made progress in ensuring compliance over prior performance in that area. For all indicators in the SPP and APR, whether the state provided valid and reliable FFY 2005 data that reflected the measurement for the indicator. Whether the state had other IDEA compliance issues that had been identified in the Department’s monitoring, audit or other activities, and the state’s progress in resolving those problems.

The IDEA identifies specific technical assistance or enforcement actions aligned with each of the determinations, with the exception of “Meets Requirements” that the Department must take under specific circumstances. These actions are consistent with the level of concern signaled by the determination, however, consistent with the IDEA, none of the enforcement actions will be applied to states this year.

Copies of the determination letters for each state will be available on Part B at:

http://www.ed.gov/fund/data/report/idea/partbspap/index.html

and, for Part C:

http://www.ed.gov/fund/data/report/idea/partcspap/index.html

Below is a summary of the State results:

PART B DETERMINATIONS

Meets Requirements

Alaska, Connecticut, Hawaii, Michigan, Oregon, Pennsylvania, Tennessee, Virginia, Wyoming

Needs Assistance

Alabama, American Samoa, Arizona, Arkansas, Bureau of Indian Affairs, California, Delaware, Florida, Georgia, Guam, Idaho, Illinois, Iowa, Kansas, Kentucky, Louisiana, Maine, Maryland, Massachusetts, Minnesota, Mississippi, Missouri, Montana, Nebraska, Nevada, New Hampshire, New Jersey, New Mexico, New York, Ohio, Oklahoma, Palau, Republic of the Marshall Islands, Rhode Island, South Carolina, South Dakota, Texas, Utah, Vermont, West Virginia, Wisconsin

Needs Intervention

Colorado, Commonwealth of the Northern Marianas Islands, Washington, DC, Federated States of Micronesia, Indiana, North Carolina, North Dakota, Puerto Rico, Virgin Islands, Washington

Needs Substantial Intervention

None

PART C DETERMINATIONS:

Meets Requirements

Alabama, Alaska, Connecticut, Commonwealth of the Northern Marianas Islands, Iowa, Maryland, Montana, Nebraska, Oklahoma, Oregon, South Dakota, Texas, Utah, West Virginia, Wyoming

Needs Assistance

American Samoa, Arkansas, Delaware, Florida, Georgia, Guam, Hawaii, Idaho, Illinois, Indiana, Kansas, Louisiana, Massachusetts, Mississippi, Missouri, New Hampshire, New Jersey, North Carolina, Pennsylvania, Puerto Rico, Vermont, Virginia, Virgin Islands, Washington, Wisconsin

Needs Intervention

Arizona, California, Colorado, Washington, DC, Kentucky, Maine, Michigan, Minnesota, Nevada, New Mexico, New York, North Dakota, Ohio, Rhode Island, South Carolina, Tennessee

Needs Substantial Intervention

None

Rett Fundraising: Pig Party Raises Funds for Rett Syndrome research

Source

The Nashville Tennessean, Nashville, TN, 04 July 2007, Tennessean.com

Publisher’s Note

Kudos to the Poulton family on a great fundraising effort. Having lived in Nashville, Tennessee in the 1990s, I can attest to the generosity and determination of residents in that part of the United States. This is outstanding evidence that even a family organized event can make a profoundly positive difference.

The original article and photos were carried by the largest newspaper in Middle Tennessee, thereby adding significantly to the awareness of Rett Syndrome. Back in 1997 doctors at Nashville’s Vanderbilt University Hospital who examined my daughter thoroughly had never heard of Rett Syndrome. 

GOODLETTSVILLE, TN, USA — More than 80 friends and neighbors attended the 10th annual Poulton Pig Party, held by the Poulton family of Goodlettsville. The annual party, on June 9, took on new meaning this year as the family took up donations for Rett Syndrome research, a rare neurodevelopmental disorder that affects the Poultons’ granddaughter. “Our fundraising effort raised about $1,100,” Brent Poulton said. “The weather was great, and the pig did his part.” Read More…