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Investigator Spotlight: Dr. Keerthi Krishnan
Dr. Keerthi Krishnan is one of four young investigators from across the globe that has been chosen for a Post-doctoral Fellowship Award. This year IRSF announced that it would fund Dr. Krishnan’s grant titled “Role of MeCP2 in the maturation of neocortical GABA interneurons and critical period of plasticity” as part of its 2010 Basic Science Research grant funding.
Learn more about Dr. Krishman and her research
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Researchers ‘Grow Rett Syndrome’ in a Petri Dish
A groundbreaking study published in the leading scientific journal, Cell, revealed that a team of investigators had successfully generated nerve cells using skin cells from four individuals with Rett syndrome. The study, funded in part by IRSF, was led by Dr. Alysson Muotri at the University of California, San Diego--a leading researcher in the stem cell field.
 A Model for Neural Development 2.10 Mb
Modeling Rett Syndrome with Stem Cells 241.00 Kb
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Rett Syndrome Mobilizes Jumping Genes in the Brain
Following on his latest discovery, Dr. Alysson Muotri (UCSD) revealed Rett patients, carrying MeCP2 mutations, have increased susceptibility for mobile DNA sequences (L1). Their data provides evidence of MeCP2 regulation in controlling L1 mobility in the nervous system and adds another level of complexity to the molecular events that can lead to neurological disorders.
Read More...
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Two New NIH Funding Announcements
Two new NIH funding announcements are now out that seek to develop outcome measures for clinical trials (PAR-11-045) or preclinical animal testing (PAR-11-038) in Rett syndrome, Angelman, Fragile X and other disorders associated with intellectual and developmental disabilities.
Outcome Measures for Use in Treatment Trials for Individuals with Intellectual and Developmental Disabilities (R01)
(PAR-11-045) Application Receipt Date(s): Multiple dates, see announcement.
Preclinical Research on Model Organisms to Predict Treatment Outcomes for Disorders Associated with Intellectual and Developmental Disabilities (R01)
(PAR-11-038) Application Receipt Date(s): Multiple dates, see announcement.
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The 112th Congress begins in January, 2011
The recent elections resulted in a gain of 61 Republican seats in the house and 6 Republican seats in the Senate. The 112th Congress will begin its first session in January 2011. The transfer of majority party rule in the House will cause numerous changes to committee and subcommittee chairmanships. IRSF is taking a short interim break from our advocacy letter writing campaign to the House Appropriations Committee as the committee will take no action on budget items until the new leadership is in place. IRSF will closely monitor activity in Washington, DC; we have many new friends to make and are eager to continue raising awareness about Rett syndrome.
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What is the difference between the cold and the flu?
How can you tell the difference?
IRSF’s staff member and UAB nurse, Jane Lane, tackles these commonly asked questions about the cold and flu season.
Learn More...
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The Spirit of Giving!
This holiday season we are thrilled to introduce The IRSF App, a safe, free and revolutionary approach to online giving.
Every purchase and search you make online can generate money for IRSF. Please download The IRSF APP. We can now raise money from big online stores such as Amazon, Skype, EBay and thousands of others at no cost to you. Simply download the IRSF App using Firefox, Internet Explorer or Chrome and continue searching and shopping as usual. You can choose to install the app as a toolbar or as a small icon  . It only takes a minute to download. If you do not like the app, it takes one click to uninstall.
Do your Holiday online shopping using The IRSF app. Help us spread the word among your family and friends. We need you now more than ever!
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“Greetings! I am Sonora (Sonny) Bodine Poulton. I am 12 years old. I live with my mom in Ohio. I don’t have siblings. So being an only child makes me extra special. I go to school and attend the 7th grade.”
Learn more about Sonora and her family
Be sure to keep an eye out for Sonora’s featured day on the IRSF Facebook page!
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Spending Time Ending Rett
The final event of the fundraising season was held in Baton Rouge, LA on Nov. 12th. Families, friends and colleagues from all over Louisiana came together at the Rural Life Museum to kick up their boots and raise their paddles for Rett syndrome and IRSF. Created by Chairwoman Kathryn Kissam, Spending Time Ending Rett, is an IRSF signature event with a country-western, laid-back atmosphere. IRSF supporter and Rett father, Kevin Black, performed a heartwarming tribute to his late daughter, Cortney, and all of the Louisiana girls and women fighting Rett syndrome. Guests enjoyed down-home southern cooking, a silent and live auction and an exciting iPad raffle! With over 300 guests, most of whom had never heard of Rett syndrome, the 1st Annual Spending Time Ending Rett Baton Rouge was a huge success. This was the first event for IRSF in Louisiana and the Rett families that attended are excited to have such wonderful event to call their own.
Thank you, Kathryn Kissam, for your inspirational support and huge heart – we would not be the Foundation we are without you. – Thank you, The IRSF staff
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Research Study Recruiting Parents of Children with Rett Syndrome
If you are a parent of a child with Rett syndrome, you are invited to participate in a research study regarding your child’s diagnosis of Rett syndrome.
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This research study is voluntary and completely anonymous. It only requires approximately 10 to 15 minutes of your time. |
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Participation in this study is voluntary and will in no way affect your relationship with IRSF or Rettnet. |
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The Brandeis University IRB (Institutional Review Board), Waltham, MA, has approved this research study. |
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Get the children’s educational coloring book, created by Rett parents Nate and Jennifer Johnson, to help educate youth touched by YOUR Rett angel about Rett syndrome!
Special message from the author and illustrator: "I saw a design opportunity where a local family was looking for an artist to create an educational coloring book for young children…describing Rett syndrome and capitalizing on similarities between the girls with Rett syndrome and their peers. I hope this coloring book is educational, yet fun and interactive, for not only youngsters, but grown-ups alike."
IRSF Coloring Book w/text 3.74 Mb
IRSF Coloring Book w/o text 1.83 Mb
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Upcoming Events
Find an Event Near You!
Educate Yourself
Annual Family Conference
Memorial Day Weekend, May 27-30, 2011*
The Boston Park Plaza Hotel
Boston, MA
www.bostonparkplaza.com
Research Articles
• Consortium Publishes New Rett Syndrome Diagnostic Criteria
• Developed autistic neuron model apparently helps treat Rett syndrome
• Dr. Longo, GQ’s ‘Rockstar of Science
IRSF Holiday Cards
There was so much excitement about our IRSF holiday cards that we decided to extend the sale. Let IRSF help send your wishes for a Happy Holiday Season to friends and family! - **Note: IRSF cannot complete International Shipments for Holiday Cards.
Silent Angels
By Ayme Sanchez
Download the new single, Silent Angels, by Rett supporter and singer/songwriter Ayme Sanchez. Ayme co-wrote the song Silent Angels in honor of our Rett angels.
Download the song now from the IRSF iFan store on Facebook.
In The News
• Family wins $629,000 to help build Rett Syndrome clinic
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The Combined Federal Campaign
CFC Code Number: 11046
The 2011 CFC campaign continues through November. If you have a fair happening near you, contact the office at 1-800-818-7388 for materials.
United Way
While we don’t have a UW code, many will accept donor directed donations. Write our EIN – 31-1682518, name & address on the donor designation line.
Donations
Please send to P.O. Box 706143 Cincinnati, OH 45270-6143.
Matching Gift Program
Check if your company has a matching gift program. Send forms to cleighton@rettsyndrome.org or by fax at 513-874-2520
Mail
Please send to 4600 Devitt Drive Cincinnati, OH 45246.
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