An Important Announcement From The Tourette Association of America

The Tourette Association of America is looking for help with pending research legislation at a national level as well as more inclusion of Tourette Syndrome in a potential reauthorization of the Individuals with Disabilities Education Act (IDEA).  Please follow the links at the bottom of each announcement to get your elected officials to participate in a very important briefing on the research legislation and so they understand how Tourette Syndrome severely impacts students with this disability.

Dear Tourette Association Members, Family and Friends, 

The Tourette Association of America has a great opportunity to advocate to be potentially included in federal legislation known as, H.R. 292/S. 849 The Advancing Research for Neurological Diseases Act of 2015. This bill will support systematic epidemiological research, data collection and analysis of neurological diseases at the CDC.

 What The Bill Does:

This bill would enhance and expand infrastructure and activities to track the epidemiology of neurological diseases including the incidence, prevalence, and other information and incorporate this into a National Neurological Diseases Surveillance System. In addition it would facilitate further research on neurological diseases at the Department of Health and Human Services (HHS). 

Why This Is Important for Tourette:

Prevalence data on Tourette Syndrome in children is inconclusive and contains conflicting results. In addition, there is little to no information on the impact of the disorder in adults. This bill could establish the prevalence of Tourette and help close the gap between identified and undetected cases, especially among ethnic and racial minority populations in the U.S. The bill could also provide for surveillance of Tourette in the U.S. that could provide insights into the long-suspected environment role in the development of the disorder. 

TAKE ACTION NOW:

On September 16, 2015 the Tourette Association of America and a Coalition of 11 Non-Profit Neurological Disease Associations will be holding a Briefing for Senators and their staff on H.R. 292/S. 849 The Advancing Research for Neurological Diseases Act of 2015. The briefing is sponsored by the Tourette Association in collaboration with the American Academy of Neurology, American Brain Coalition, Brain Injury Association of America, Epilepsy Foundation, International Essential Tremor Foundation, National Multiple Sclerosis Society, Parkinson’s Action Network, Rare Disease Legislative Advocates, Research!America, and United Spinal. 

Most recently, the bill passed out of the House of Representatives as part of the 21st Century Cures Act. In order to make this bill a top priority in the Senate we are asking that you, your family and friends to email your Members of Congress to ask for both support of Tourette Syndrome and the Advancing Research for Neurological Diseases Act; while inviting staff members to attend the Congressional Briefing on September 16th

Write your Members of Congress and urge them to support this initiative by personalizing our form letter. Email Elridge@Tourette.org to let us know you took action. Thank you in advance! 

Click here to TAKE ACTION NOW!

And the second announcement:

Dear Members, Family, and Friends,

Since 2006, Members of the Tourette Association have witnessed the powerful role policy has in supporting students with disabilities when Tourette Syndrome was included within the Individual with Disabilities Education Act (IDEA).  As Congress discusses ways in which to improve the education system, hold students and teachers accountable we invite you to voice your concern and relay 3 specific recommendations on how to meet the needs of students with Tourette and Tic Disorders.

Why This is Important!

According to the US Center for Disease Control and Prevention (CDC) 80% of children with Tourette have additional health conditions; 50%-70% have co-occurring Attention Deficit-Hyperactivity Disorder (ADHD) and 30-50% have Obsessive-Compulsive Disorder (OCD). Individuals with Tourette routinely have higher rates of anxiety, depression as well as learning disabilities. These conditions can have a negative impact on a person’s education, career and social life; decreasing their quality of life. Please advocate for Tourette and Education Services.

 Click Here to Advocate Now!

 

Urgent! Funds Needed For DOE FOIA On Smarter Balanced & Vendor Contracts ASAP!

Delaware DOE Smarter Balanced & Vendor Contracts & Emails FOIA GoFundMe Page

Exceptional Delaware needs your help, and it needs it yesterday!  Back in March I submitted a Freedom of Information Act request to the Delaware Department of Education for the Smarter Balanced Assessment Consortium (SBAC), American Institutes for Research (AIR), and Data Recognition Corporation contracts and any emails sent from the DOE to these entities.  The DOE responded with an original $6,500 quote and then, to add “recently found” contracts, the estimate surged to over $8,500.  After filing a petition against the DOE with the Delaware Department of Justice, the DOJ responsed a few months later with an estimate of $1,725.10.  I started a GoFundMe donation to raise the costs for this FOIA and the costs associated with GoFundMe with a goal of $1,875.00.  To date, $775 has been raised, but we are still short of the goal by $1,100.

As the Smarter Balanced Assessment scores are slowly being released around the country, and cut stores are being changed, it is more imperative than ever that the people of Delaware see what this state paid for, any communications surrounding this, and how truthful the Delaware DOE and Governor Markell were with what they told the public and legislators when it became law in Delaware last year.

I will be submitting an initial check to the Delaware DOE next week to get the process going based on funds that have already been donated, but the request will not be completed until ALL funds are given to the DOE.  This is top priority folks because we need the truth, once and for all!

In the spirit of transparency, this is the activity that has already happened on this GoFundMe account:

Donations already made:

$50, Kris Chalfant, 4 Days ago
$25, Anonymous, 14 days ago
$100, John Kowalko, 14 days ago 
$50, Anonymous, 14 days ago
$50, Paul Baumbach, 14 days ago 
$50, Ellen McConachie, 25 days ago
$10, David Anderson, 1 month ago
$40, Mary Schorse, 1 month ago 
$10, Anonymous, 1 month ago
$50, Cassandra Marshall, 1 month ago
$25, Anonymous, 1 month ago
$25, Anonymous, 1 month ago
$50, Al Mascitti, 1 month ago
$30, Anonymous, 1 month ago
$200, Anonymous, 1 month ago
$10, Dee August, 1 month ago
Total: $775.00, Goal $1875.00, Needed: $1100.00
Account Activity to date:

$663.24

Total amount that has been withdrawn
 
$45.75
Withdrawals that have begun
 
$0.00
*Pending balance that will be available soon
 
*Pending balances are normal and will be available in 1 – 5 days.

SCHEDULED WITHDRAWALS

Will Arrive By Aug 31
$45.75
Check will be sent on Aug 10, 2015

RECENT WITHDRAWALS

Delivered By Aug 8

$663.24
Check sent on Jul 27, 2015
Total Online Raised $775.00
Total Offline Raised $0.00
Total Amount Raised $775.00
GoFundMe (5%) $38.75
WePay (2.9% + 0.30)

per transaction
$27.26
Total Fees $66.01
Remaining Total $708.99

I received the first check today, and I will be starting a separate checking account to cover this FOIA and any other future FOIAs. I appreciate any help you can offer with this mammoth endeavor. Once the request is completed, I will be making all the documents public on Exceptional Delaware.

Jon Pelto: Washington State Lowers Pass Mark for Common Core Test

I’m pretty sure the “no backbone” Delaware DOE and the Emperor Governor Markell are going to play “Follow The Leader” on this. They didn’t even pay the “extra” to have preliminary results released for Smarter Balanced. They are going to see what all the other states do before they release anything. This is the weak-in-the-knees type of stuff Delaware does.

Diane Ravitch's blog

Jonathan Pelto reports a very important story from Washington State. As we have learned to expect, a majority of the students in the state “failed” the Smarter Balanced Assessment. Why?because the testing groups set the “cut score” (passing mark) unrealistically high.

Remarkably, the state board of education lowered the cut score so that most students would be able to graduate.

Pelto writes:

“Yup, you read that correctly, after taxpayers were forced to spend hundreds of millions of dollars developing the Common Core and the Common Core Tests and students and teachers wasted unfathomable amounts of time prepping and taking the tests that were designed to label the vast majority of students as failures, the “lead” state behind the SBAC testing scheme simply threw out results.

“Instead of going with the cut score that was adopted by the SBAC coordinating committee last November, an unfair rating system that was adopted with…

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