Back to School

The summer is coming to an end and for many of us the beginning of a new school year is welcomed. Summer is usually thought of as a fun and care free time of year but for our families, it can sometimes be difficult. With routines being off kilter and schedules different from the norm, summer sometimes brings a feeling of stress and chaos. In our house we look forward to the first day of school but in order for it to start out on the right foot, we make certain we have prepared ourselves!

Click here for a few tips to ensure success!

Rett Racers Run for Research

Families and friends in the Rett syndrome community are dedicated and enthusiastic fundraisers, and many are also distance or endurance event participants. These volunteers are connecting with one another to represent IRSF at events around the country and to raise significant amounts of money which plays a major role in advancing our research program.

Welcome to our new RETT RACERS program which provides volunteers who are training to run, swim or bike to seize the opportunity to fundraise online as part of a team of racers. Each event, whether it be the NYC Marathon or the Massachusetts Rebel Race will have its own “team” on our new online fundraising platform. These volunteers will also be able to share their training updates with one another and the general public through a bulletin board “Training Updates” link on the website.

Want to support a Rett Racer? Please click on the name below to view or donate to their personal fundraising page:

Additional volunteers are contacting us daily to learn how to fundraise while training for events like the ones above. If you are already signed up for a race and want to know more about fundraising as part of your training, contact Marcy Fritter (mfritter@rettsyndrome.org) or register to fundraise through the website: 2012 races/events or 2013 races/events.

Featured Family Fundraiser: The 2nd Annual Cure for Kiera, Drive for Hope – The Bathie Family

IRSF is pleased to highlight another one of our great Family Fundraising Events. These events raise a significant amount of money every year and play a major role in advancing the IRSF research program. IRSF wants to celebrate the work and effort of our families and friends. Thank you to all of you who raise money through these or through your participation in an IRSF signature event!

We are honored to recognize the Bathie family: Keira (4), Katie (mom) and Jim (dad) who hosted the 2nd Annual Cure for Keira, Drive for Hope golf event in Pewaukee, WI in July. With over 120 golfers, wonderful volunteers, fun raffles and games, and highly sought after auction items, it was another great success. Thank you to the Bathies, the Wisconsin Rett families, and all of the event participants for raising almost $80,000 in the first two years.

Do you want to fundraise and you’re not sure where to start? Start with what you, your family and friends already enjoy doing – you can add a fundraising component to almost anything. Still not sure? Check out this great list of fundraising ideas.

October Rett Syndrome Awareness Month

Please join IRSF and families around the country as we unite to hear how YOU can participate in October Rett Syndrome Awareness Month. Our month only becomes meaningful when we bring it to people’s attention. Join us to learn tips on how you can do this in your community. It’s easy to take part!

August 29, 2012 @ 2p.m. EST

2012 Strollathon: Stroll & Roll for Rett Syndrome

It's time to celebrate our Strollathon success! You have already hosted 5 great Strollathon events in 2012: St. Louis, Chicago, Michigan, Cape Cod and Alabama. All 5 of these events have brought in more donations and sponsorships than the previous year, and all were beyond their fundraising goals! With just those 5 events, you have already raised over $280,000 this year with approximately 100 angels and 2,000 participants attending. What an amazing start!

We have 8 Strollathons coming up in the month of September and each is led by a dedicated Chair with important volunteer support! These volunteer Chairs are parents, spouses, and employees, who have made the additional commitment to the Strollathon program. If you know one of these great individuals, or even if you don’t, consider sending them a personal SHOUT OUT:

Thank you for your dedication to your daughters and to these events. You are the reason for the success!

Check out our full list of Fall Strollathons with links to register and fundraise! Think you’ve got what it takes to lead a Strollathon in your area in 2013? You can see you are in good company! Contact Marcy Fritter to learn more!

Investigator Spotlight: Gail Mandel, PhD, Howard Hughes Medical Institute, Vollum Institute, Oregon Health and Science University

IRSF is pleased to highlight Dr. Gail Mandel in this month’s Investigator Spotlight. Dr. Mandel recently co-chaired the Basic Research Symposium at the 7th World Rett Syndrome Congress last June alongside Dr. Huda Zoghbi. IRSF is thankful to Drs. Mandel and Zoghbi for putting together an excellent program that will help “Chart the Course” for Rett syndrome research.

Dr. Gail Mandel is a Howard Hughes Medical Institute (HHMI) Investigator, a Senior Scientist at the Vollum Institute, and a Professor in the Department of Biochemistry and Molecular Biology in the School of Medicine at Oregon Health and Science University (OHSU). She received her Ph.D. in Immunology from the University of California, Los Angeles (UCLA) and pursued postdoctoral training at UCLA and the University of California, San Diego. Prior to her position at OHSU, Dr. Mandel had been a faculty member at Harvard Medical School, Tufts University, and Stony Brook University. In addition to receiving numerous awards throughout her scientific career, Dr. Mandel is a member of the National Academy of Sciences.

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15 sessions are now available for on-demand replay for a nominal subscription fee, with bundled pricing also available. A special discount offer for these subscriptions will be emailed to paid attendees of the Congress. The Welcome Address by Chair Kathryn Kissam and Parent Keynote by Mickie McCool are offered right now as a complimentary gift to everyone, from your IRSF Board and staff. More sessions will be added soon that were audio recorded. Also visit the new World Congress Photo Gallery!

Closing the Gap – October – Bloomings, MN

Susan Norwell, M.A., and Judy Lariviere, M.Ed., OTR/L will be presenting an all-day Rett syndrome preconference workshop "Rett Syndrome: Communication and Learning (Tots to Women)”

on Tuesday, October 16, 8:00 am - 4:30 pm. This is a first time ever for a full day workshop dedicated to Rett Syndrome! There are also open exhibits that evening from 5:30 to 8:30 and then the regular conference sessions run from Wednesday through Friday at 12 noon.

Closing the Gap is offering a discounted parent registration rate of $275 and offering limited conference scholarships.

www.closingthegap.com

American Speech-Language Hearing Association Convention

Let your Speech Language Pathologists (SLPs) know to attend this first-ever session on Rett syndrome at the upcoming American Speech-Language-Hearing Association (ASHA) convention, on Saturday, November 17th, in Atlanta, GA, presented by Theresa E. Bartolotta, PhD, CCC-SLP, titled "Communication and Swallowing in Rett Syndrome: An Update for Clinicians."