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Dear Rett Syndrome Community,

IRSF would like to extend our deepest gratitude to each and every one of you who took action this past October Rett Syndrome Awareness Month. Because of you, awareness and funds were raised around the world for Rett syndrome throughout October. Here are just a few notable highlights:

IRSF Public Service Awareness campaign

• Media tour Oct 10th by Country Music Legend Clint Black; Jeffrey L. Neul, M.D., Ph.D., Baylor College of Medicine, and Paige Nues, IRSF captured an audience of over 2.9 million
• IRSF mailed thousands of radio and TV PSA's to stations across the US - your efforts to request airplay in your communities should continue beyond October!

Research webinar - Oct 18th

• An exclusive inside look at the IRSF-funded IGF-1 Clinical Trial for Rett Syndrome with the Principal Investigators at Boston Children's

Fundraisers

• Over 25 incredible events hosted by families and supporters of IRSF, including the 11th Annual Boston Festival of Food and Wine, the 4th Annual Spending Time Ending Rett event, coast-to-coast Strollathons (IRSF's signature event), Phantom Tea mailings, Care and Cure Cafe toasts, golf tournaments, picnics, fishing tournaments, horse expos and so much more

Awareness

• 23 state proclamations obtained declaring October Rett Syndrome Awareness Month
• First annual Blue Sky Girls event, the brainchild of Dr. Sasha Djukic at the Montefiore Rett Center in NY, held in over a dozen cities around the world
• RTT facts and highlights shared daily across social media channels reach millions of friends

These accomplishments were achieved through the hard work, dedication and commitment of countless volunteers. Congratulations and thank you! Build on these successes year-round, and start thinking now about how you can get involved next year. It's never too early to start your planning! Visit www.rettsyndrome.org/octoberawareness to learn more.


Stephen Bajardi
Executive Director
IRSF

IRSF would like to congratulate Dr. Monica Justice and Baylor College of Medicine (BCM) in Houston, TX for their significant NIH award of $34 million for their Knockout Mouse Phenotyping project funded by a trans-National Institutes of Health Mouse Initiative. BCM is one of three groups that received a total of $110 million from this NIH initiative to build a “library” of knockout mice over the next five years, which will allow scientists to identify the function of important protein-coding genes and to better understand disease in a more efficient manner.

Read More...

2011 Society for Neuroscience Conference

Busy week for IRSF's grants and research department

IRSF attended the 2011 Society for Neuroscience Conference in Washington, DC from Nov. 12-16. It is one of the biggest conferences in Neuroscience, and there were over 30,000 attendees from all over the world. IRSF was an exhibitor at the conference and put up the IRSF booth to bring awareness to the scientific community about IRSF’s excellent grant program for basic and translational research for Rett syndrome. After the Neuroscience conference, IRSF will hold a grant review panel for both Basic and Translational grant programs at the Hugo W. Moser Institute at Kennedy Krieger in Baltimore, MD. IRSF anticipates lively discussion amongst our Scientific Review Board members to determine the top research grant applications received for this round.

Congratulations Dr. Huda Zoghbi

IRSF is very excited to report that Dr. Huda Zoghbi of Baylor College of Medicine put Rett syndrome in the limelight at the conference. Dr. Zoghbi has been awarded the prestigious 2011 Gruber Prize in Neuroscience from the Peter and Patricia Gruber Foundation, and has given an amazing presentation on her work in Rett syndrome research for over 25 years. This is a photo of Dr. Huda Zoghbi giving her presentation entitled "Rett Syndrome: Linking Epigenetics and Neuronal Plasticity" after being awarded the Gruber Prize in Neuroscience by Patricia Gruber.

For more information, visit:
www.sfn.org/am2011/
www.gruberprizes.org/GruberPrizes/Neuroscience.php

UAB researchers seek to reverse Rett syndrome in children

Dr. Lucas Pozzo-Miller’s research at University of Alabama at Birmingham (UAB), funded by IRSF, adds mounting evidence that Rett syndrome need not last a lifetime, and is hailed a “Hot Topic” at this week’s Society for Neuroscience meeting in D.C. His lab’s research shows dendritic spines are not in fact fewer in post-symptomatic mice, but are actually “frozen” in function, opening the door to potential treatments under investigation that could boost neuronal plasticity, such as the protein BDNF. IRSF congratulates Dr. Pozzo-Miller and team for their discovery, and commits to continued intense investment into drug discovery research.

Read more...

Get the Scoop: Inside the IGF-1 Clinical Trial for Rett Syndrome

The International Rett Syndrome Foundation, in conjunction with Boston Children’s Hospital Rett Syndrome Program, invited you to an exclusive inside look at the IGF-1 Clinical Trial for Rett Syndrome with Principal Investigator Dr. Omar Khwaja and team on October 18th to learn more about how this clinical trial came about and a current trial status update. We are unable to post the recorded webinar for on-demand replay, so we are looking at dates to host another live webinar for those that missed it. Look for the announcement!

Investigator Spotlight: John Christodoulou, AM, MB, BS, PhD, FRACP, FFSc, FRCPA, CGHGSA, Children’s Hospital at Westmead, Sydney, Australia

As we continue with our Investigator Spotlight series, it is our pleasure to highlight Dr. John Christodoulou this month. Dr. Christodoulou is the Director of the Western Sydney Genetics Program, Head of the Genetic Metabolic Disorders Service at the Children’s Hospital at Westmead, Sydney, and Professor in the Disciplines of Paediatrics and Child Health and Genetic Medicine at the University of Sydney. He has also been appointed a member of the order of Australia (AM) for his services to human genetics as a researcher and clinician.

Read More...

EXTENDED DEADLINE: Order Your IRSF Holiday Cards TODAY!

Since IRSF has received such an overwhelming response for this year’s Holiday Card design, we have decided to extend the deadline into early December! Get your Holiday Cards today & Keep Rett syndrome in mind while wishing your family and friends Happy Holidays!

$15 per pack
Each pack contains 12 cards and envelopes (Two pack order minimum)

Click here to order yours today!

Note: Due to fixed shipping and handling fees, we will be unable to accept international orders.

The Rett Gazette has a NEW Look and is Headed your Way!

The newest edition of IRSF's print newsletter, the "Rett Gazette," is hitting mailboxes now! It hit some parts of Ohio this week.

*WE HAVE A NEW LOOK! But the same great information on research, health, family support, advocacy and awareness!

Don’t receive the Rett Gazette?

Check out past issues online!
Sign up to receive the Rett Gazette

New Jersey Rett Syndrome Resource Center at UMDNJ

Kapila Seshadri, M.D, Medical Director, Amy Feldman, RN, Program Nurse Coordinator 732.235.7875 Child Health Institute, 89 French Street New Brunswick, NJ 08901 - RWJ MEDICAL SCHOOL • NEW BRUNSWICK • 732-235-7875

The New Jersey Rett Syndrome Resource Center at UMDNJ-RWJ Medical School, in partnership with the New Jersey Rett Syndrome Association, is dedicated to serving the needs of individuals with Rett Syndrome, and their families. The mission of the Center is to facilitate clinical care through multidisciplinary diagnostic and treatment services, raise awareness of Rett Syndrome in the healthcare community through educational activities, and facilitate research into the causation and cure of Rett Syndrome. Contact now for appointments and information.

An Alabaster girl and her family will spend the next year traveling across the country to represent the Easter Seals organization after she was named the non-profit’s Child Representative of the Year for 2012.

Caroline Long, who was diagnosed with multiple disabilities – including Rett syndrome – early in her life, has been involved with the Easter Seals of the Birmingham area’s Pediatric Therapy Services center in Pelham for the past 10 years.

Featured Angel: Sejal Shah

Hi! My name is Sejal, and I am 5 years old. I was born in Williamsville, New York, and I was diagnosed with Rett syndrome when I was 2. I have been through some tough times, but now I'm doing great. I have learned to walk short distances, I am learning to communicate with my eyes, I am starting to learn my letters and numbers, and I am happy, giggly, and healthy almost all the time. And in the fall, I'm going to start Kindergarten -- I can't wait!

Learn more about Sejal and her family...

Note: IRSF chose to feature Miss Sejal Shah for a second month so that her story did not get lost in the hustle and bustle of Rett Syndrome Awareness Month.

Take bold action this year and help us fight for our girls and women fighting Rett syndrome! Set your 2012 resolution NOW to get involved and take part. Every day our Rett angels face the world with a brave face as they patiently wait for us to find treatments and a cure. IRSF has hit the ground running this year – make this the year you get active and give hope to thousands. Take part in a local IRSF Strollathon, host your own IRSF Signature Event, or create an online fundraising page! Click here for an A-Z list of easy fundraising ideas to get your office, kid’s school or your community on board with fundraising for your Rett angel! IRSF makes it easy to get involved.

Your help is our hope. Your help is their hope.

Each Month IRSF will Provide you with a Fundraising Idea!

These ideas can be used throughout the year to keep the fundraising going and keep your community involved! Many of the Fundraisers we are going to share can be put together fairly quickly and are easy to do!

Hot Cocoa Stand for Rett

Warm up this fall or winter with a Hot Drink Stand for Rett! We’ve had families from all across the country have turned this long time cold weather tradition into a fundraiser for IRSF. Our partners at DotGain Solutions, Inc. created the artwork for the cups, signs and fliers so everything you need to advertise and get your stand up and running is ready to go! All you need is the coffee, hot cocoa or tea, cups, donation jars and a good salesgirl/boy! Enjoy this fun idea with the kids on a cold fall or winter day. Set up shop at a local sporting event or community center – just to name a couple ideas. Click here to download the one page “how to” and the “Stand for Rett” logos and artwork! Check out the Shah family’s hot drink stand last winter! They set up their stand at a gymnastics competition and raised over $2,000!

Get Started!

Rett Syndrome Clinics: Thank You!

Katie's Clinic for Rett Syndrome
Thanks to the stellar work of Dr. Mary Jones, Medical Director of Katie's Clinic for Rett Syndrome at Oakland Children's Hospital, on her American Academy of Pediatrics Community Access to Child Health (CATCH) grant, the clinic and the grant will be a featured project in the atrium of the American Academy of Pediatrics for one year. The many members and visitors of the American Academy of Pediatrics will be able to view information about Rett syndrome for AN ENTIRE YEAR! Thanks Dr Jones for all you do for our children.

Chicago Natural History Study
The Chicago Natural History Study took place in early November and was, yet again, a huge success. A special thanks from IRSF to mom and volunteer coordinator Marie Kral! We greatly appreciate everything you and all of our clinic coordinators do for IRSF and our families

Find a clinic near you.