BLACK OUT RETT SYNDROME in support of October Awareness Month

October has always been our time to make a difference; however this October has a special call to action! Help us Black Out Rett Syndrome! Rett syndrome has had an immeasurable impact on our children, our families and our community. It is the leading cause of severe impairment in girls yet the general public still doesn’t know about it. Let’s change this. Ask the world to embrace our children and help us Black Out Rett Syndrome!

IRSF is here to help you make each activity a success. Contact IRSF for assistance in turning your ideas into reality, or leverage one of our ideas listed below. This month is dedicated to raising awareness and it can only happen with your involvement!

2012 Strollathon: Stroll & Roll for Rett Syndrome

Local morning show host and Rett uncle, Shawn Tempesta with Pesky, raised over $3,000 for the Nevada – Las Vegas Strollathon and fulfilled his commitment to wear a purple tutu on Stroll day!

Can you believe we are more than halfway through the Strollathon season? The September Strollathons have already more than doubled our total for the year and our five Strollathons this past weekend achieved another $150,000 with great weather and wonderful families in attendance! Thank you to each and every one of you who has stepped up to lead, volunteer for, participate in and donate to your local Strollathon event. Without you, these events couldn’t happen and we wouldn’t be raising these important dollars to fund the important research and clinical trials currently underway!

There are only six more Strollathons in the month of October and you can still get involved. Don’t forget about the Black Out Rett Syndrome Match for October Awareness Month – your donation to one of the 2012 Strollathons (even the Spring Strollathons) may be matched. Once our Strollathon donations received in the month of October (only) reach $230,000, the match kicks in and every dollar over $230,000 received in October will be matched. Donors to the Spring Strollathons can still mail in offline donations to help us achieve the match!

Congratulations to Jackie Babiarz and Laura Brown who participated in the Chicago Marathon on October 7th. Keep supporting all of our Rett Racers – any donations made to a Rett Racer in October will also be matched. Our next big group of Rett Racers will be wearing Nike gear the first weekend of November in the NYC Marathon!

Want more information? Visit the 2012 or 2013 Rett Racers webpages or contact Marcy Fritter. The Rett Racer program is for any distance or endurance participant who has already registered or confirmed a spot in an event.

Featured Family Fundraiser

Do you like pizza? Does it taste better when it benefits a great cause? Maria Bateh and her family felt that most people would answer “YES” to those questions. They set up a percentage of sales day at Slice Pizza in Birmingham, AL and got to work promoting the fundraiser. The success of an event like this depends highly on the efforts and dedication of the volunteers to get the word out to as many people as possible. The Batehs, in conjunction with Susan Lee and the Alabama Strollathon, were highly motivated and were rewarded by raising $1700 from that one day. A typical percentage of sales day raises between $500-800. Congratulations and thank you for your effort, Bateh family!

Investigator Spotlight: Alan Percy, MD, The University of Alabama at Birmingham, Civitan International Research Center

With the arrival of fall, IRSF is preparing for October Rett Syndrome Awareness Month (ORSAM) one of our busiest months of the year! With ORSAM in mind, we would like to take the opportunity to highlight a long time prominent figure who has been so dedicated to Rett syndrome. Dr. Alan Percy from the University of Alabama at Birmingham has worked in Rett syndrome research for almost 30 years. Dr. Percy is a pediatric neurologist at UAB, where he currently serves as Professor of Pediatrics, Neurology, Neurobiology, and Genetics. He is the Director of the Rett Clinic and Research Center, Associate Director of the Civitan International Research Center, and an UAB Intellectual and Developmental Disability Research Center Principal Investigator.

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Christopher Austin, MD is the new Director of the National Center for Advancing Translational Sciences

National Institutes of Health Director Francis S. Collins, MD, PhD, recently announced that Christopher Austin, MD will be the new director of the National Center for Advancing Translational Sciences (NCATS). The NCATS center was launched in December 2011 to develop innovations and streamline the translational research pipeline in an effort to speed the delivery of new drugs, diagnostics and medical devices to patients. Dr. Austin will now lead the research initiatives of NCAT programs that include the Office of Rare Diseases Research, the NIH's Chemical Genomics Center (NCGC) and the Therapeutics for Rare and Neglected Diseases (TRND).

As IRSF continues to build its Translational Research Program, we will reach out to Dr. Austin and NCATS for guidance in developing and moving new therapies for Rett syndrome forward quickly.

For more information about NCATS, visit www.ncats.nih.gov. To view the NIH press release, visit http://www.nih.gov/news/health/sep2012/ncats-14.htm.

Webinar

Register now for an IRSF-hosted educational webinar: “From Mind to Molecules: Neurobiology of RTT”, Presented by Jennifer Larimore, PhD, Funded Investigator, Agnes Scott College, on Oct 23, 2012 from 1:00 PM EDT - 2:30 PM EDT

Register at:
attendee.gotowebinar.com/register/6983389019920206336

Webinar Description: The brain is the most complex organ in the human body. When the molecules that regulate how a brain forms do not function properly, diseases such as Rett Syndrome result. This session will address some of the basic concepts to better understand the dysfunction occurring in patients with Rett Syndrome in the whole brain as well as individual brain cells. While we will walk through some Neurobiology 101 in this webinar, we will also cover the highlights in the current literature that may bring us closer to understanding and treating Rett Syndrome.

After registering, you will receive a confirmation email containing information about joining the webinar.

United Way Campaign!

September and October are usually the months when employees are asked to support their local United Way. Please encourage family and friends to direct their United Way pledges to the International Rett Syndrome Foundation. While we are not an approved charity in any of the 1500+ campaigns throughout the country, many organizations will accept “directed” donations to the charity of your choice. Simply write IRSF and our EIN – 31-1682518 on the donor’s choice line and if there is room include our address 4600 Devitt Drive, Cincinnati, OH 45246 – the more information included, the better! Over the years we have received donations through over 100 different United Way organizations throughout the country. In 2011 the foundation received over $75,000 from United Ways and individual company corporate campaigns.

Fall is also Combined Federal Campaign pledge season. The CFC consists of all Federal agencies, including the US military throughout the word and the Post Office. It also includes the quite a few state, city and municipal employees campaigns. In the 2012 campaign which took place in the fall of 2011, the foundation received over $52,000 in pledges - a 4% increase over the previous year’s pledges! Please encourage friends and family to participate and direct their donations – Our code for the Combined Federal Campaign is 11046.

Yellow Dress Day

IRSF applauds author, Michelle Worthington, for her dedication and support. Yellow Dress Day is a sweet, colorful and fun children’s story book that every child would love to read. Here is a message from the author, who wrote the book in honor of her best friend’s daughter, Ava. 5% of proceeds from the sale of this book will be donated to IRSF. Thank you Michelle!

“Ava is the type of little girl who inspires people to be the best they can be. She truly is an angel. She inspired me to write this book for her after we spent the afternoon looking at her dresses and watching Tinkerbell, whom she loves and the fairies that represent the different colours and tasks they perform. When Ava smiles, the whole world sparkles, so I wanted to write her a story that would make her smile. Tina is my best friend, and her dedication to her children, along with her husband Victor, is amazing. I wanted 5% of my royalties to go to IRSF because Tina has always told me of the great support they provide, both emotionally and with up to date information and research. Knowledge is power and I have seen many mothers like Tina become an expert in their field, in some cases more so than the professionals who treat their daughters. I hope that by having information on IRSF in the back of the book, it will raise awareness of what Rett syndrome actually is and by donating my royalties, even those not directly affected can help. Angels like Ava touch people’s lives, not only on 'Yellow Dress Days,’ but by making each new day the best day ever.”

Yellow Dress Day is available at www.michelleworthington.com.

Educators Network

Has your child’s educators joined the IRSF Educators Network? Every parent should encourage all Occupational Therapists, Physical Therapists, Speech Pathologists, Special Education Teachers, School Nurses…and anyone else who plays a role in your child’s education to register. This network provides a forum for educators to share information and learn from each other. The 2012-2013 Calendar of Presentations is almost complete. Educators won’t want to miss out on the following presentations:

• The DIR-Floortime Model: Why it works for our girls
• Informal Classroom Assessments
• Music in the Classroom
• Neurological Effects in the Classroom
• Emergent Literacy Part I
• Self-Selected and Writing
• Guided Reading/Decoding
• Wrapping it all up: Problem solving and consultation
• Let’s Talk: Supporting conversations for individuals with Rett syndrome using ACC

Join today!