In This Issue

HELP IRSF WIN $500,000 FROM CHASE!

IRSF has the chance to win $500,000 from the Chase Community Giving Competition AND WE NEED YOUR HELP! Thanks to you, IRSF won $25K in Round 1! As a finalist in the top 100 charities in Round 1, IRSF has advanced to Round 2 (the final round) for a chance to win up to $500,000 – that’s in addition to the $25K awarded in Round 1!

CAST YOUR ONE TIME VOTE FOR IRSF ON FACEBOOK BETWEEN MAY 19-25th!
*Please note that you will have to “like” the Chase Community Giving Page and “allow” the app to access your profile in order to vote.

Chase Community Giving is a program that allows users to vote for local charities that matter most to them. By participating, users will help Chase direct corporate philanthropy dollars to eligible organizations. Round 2 voting will last one week, beginning on May 19, 2011 and ending at 11:59 PM EST on May 25, 2011. Each person has 5 votes to cast for the Top 100 winners from Round 1. You can see how many votes you have remaining at the top of each page. Also, the Advisory Board will be granting an additional $500,000 to select charities in the Top 100 (see below).

HOW CAN I HELP VOTE RAISE FOR THIS COMPETITION?

1. Add this to your Email signature!
   • Help IRSF Win up to $500,000!
     Cast your one-time Facebook vote
     between May 19th—25th, 2011.
     Vote & Share TODAY!


2. Repost or "share" IRSF's daily reminder Facebook posts to your own FB and Twitter pages.


3. Email your contacts:
   • Help IRSF Win up to $500,000 from Chase!
     Cast your one-time Facebook vote for IRSF between May 19th-25th!
     Vote & Share TODAY!
     
     HELP IRSF WIN $500,000 FROM CHASE!IRSF has the chance to win $500,000 from the Chase Community Giving Competition AND WE NEED YOUR HELP! Thanks to you, IRSF won $25K in Round 1! As a finalist of Round 1, IRSF has advanced to Round 2 (the final round) for a chance to win up to $500,000 for Rett syndrome!
     
     The Chase Community Giving program allows users to vote for charities. Voters will help Chase direct corporate philanthropy dollars to eligible organizations. Round 2 voting will last one week, beginning May 19 & ending at 11:59 PM EST on May 25, 2011.
     
     Cast your 1-time vote for IRSF Today!
     
     Please Note: This voting competition is hosted solely on Facebook. In order to vote, you must have a Facebook Profile, must “like” Chase Community Giving and allow the “app” to access your profile.
     
     Thank you for your support!
     Call 1-800-818-7388 for questions


4. Pass out flyers and/or awareness cards (attached). at: school; your workplace; at social, recreational, sporting events; stores and local places of business and more!
   • Download flyers
     Download pass around awareness cards


5. Carry your iPad or wireless laptop the week of May 19-25 and encourage people to vote and share on Facebook in real-time. EVERY VOTE COUNTS!!

CAN I VOTE IF I AM NOT A U.S. CITIZEN OR UNDER 18 YRS OF AGE?
Yes, voting is open to all those who have Liked Chase Community Giving and who follow the Official Rules Spring 2011.

Want to Know More...

IRSF Boston Conference: 1 Week Away

There’s still plenty of time, it’s not too late to register and make travel plans for IRSF’s annual education and awareness conference in Boston May 27-30, 2011. Don’t miss out on this unique opportunity to attend almost 40 unique sessions on specific Rett-related care, treatments, and research. With expert speakers, exhibitors and attendees from all over the world, you can’t afford to miss this one-of-a-kind event. Learn more at www.rettsyndrome.org/conference.

Can’t attend in person? Sign up for the Saturday webcast sessions!

Your webcast registration offers you real-time virtual attendance to the Saturday sessions, plus continuous on-demand replay for 90 days after the event, all for only $125 USD. Sign up here!

One webcast attendee made an event out of it last year, and you can too! Organize your event for Saturday May 27th, or if the time zone doesn’t work for you, host your gathering a week or so after the conference on your own time schedule. Here’s what one parent said of last year’s webcast:

"The response was great! We got together at my church, I provided lunch, dinner, and childcare. Parents, a school PT, a teacher, an aide, a behavioral specialist and the children. People were educated, relationships developed and girls and their families have a roadmap!" - Kara D

This year’s webcast program is as follows:

Research

Investigator Spotlight: Dr. Monica Justice, Baylor College of Medicine

Dr. Justice from Baylor College of Medicine received IRSF’s second ANGEL Grant Award last year for her project titled "Developing new therapeutic targets for amelioration of Rett Syndrome from the identification of genetic suppressors in mice." This project is backed by strong scientific evidence that suggests that Dr. Justice’s discoveries will have applications for identifying therapeutic targets. This year Dr. Justice will Co-Chair a Session at IRSF’s 12th Annual Rett Syndrome Symposium in Leesburg, VA.

Learn more about Dr. Justice and her research.

A $1.4M Award Shines a New Light on Rett Syndrome

IRSF funded researcher, Dr. Yi Eve Sun was recently awarded $1.4M for a study focusing on Rett Syndrome in stem cells.

Dr. Sun, a UCLA based Rett researcher who will co-chair IRSF’s 12th Annual Rett Syndrome Symposium was awarded the $1.4M grant as part of a program designed to help move stem cell research from the laboratory bench into the clinic. Dr. Sun's new project will develop new ways to monitor the connectivity and function of neurons by engineering two types of neurons from normal stem cells, and a stem cell model of Rett syndrome. Her team is currently developing a novel cellular model of Rett that can be controlled by a light-dependent switch. They aim to study the fate of these cells by transplanting them into mice to better understand neural communication – comparing normal and diseased human neurons. This model will provide another tool for researchers to find ways to correct neural dysfunction with new treatments.

Dr. Sun is Associate professor of psychiatry and biobehavioral sciences at the Semel Institute for Neuroscience and Human Behavior at UCLA, and of molecular and medical pharmacology at the David Geffen School of Medicine at UCLA.

For more on this story click here.

IRSF's 12th Annual Rett Syndrome Symposium to take place Sunday, June 26th – Tuesday, June 28th 2011 in Leesburg, Virginia is at full capacity!

We’re excited to report that we have experienced a record interest in attending this year's meeting--especially from the international community.

Next year IRSF will host the 7th World Congress on Rett Syndrome to take place June 24th - June 28th, 2012 in New Orleans, Louisiana. This very important, global meeting will bring together speakers and luminaries in the field of Rett syndrome together with families, IRSF staff and a host of other colleagues and professionals. Please lookout for further communication on this meeting as the details become available.

Read more...

Happenings

Featured Angel: Victoria Calabrese

Hello, my name is Victoria Francesca Calabrese. I was born November 11, 2004. My friends call me Tori and my Mom calls me her angel.

When I was 7 months old, doctors were concerned with my low gross motor skills and referred me to the Infants and Toddlers program. Physical Therapy was started and by 9 months old I still was not making significant progress with my gross motor milestones, so I was referred for further treatment and testing.

Learn more about Tori and her family...

Fundraising and Hope Raising...

Over the years, IRSF volunteers, parents, caregivers and advocates have used fundraising to do more than raise crucial research funding – it has helped instill hope in the community, and has helped those with loved ones suffering from Rett syndrome to heal. As a volunteer-driven Foundation, IRSF prides itself in supplying their dedicated volunteers with the skills, materials and support they need to make their fundraising successful.

Over the last 10 years the momentum being built in the community is unmatched. The evolution of the IRSF fundraising program is proof that hope does drive many and getting involved is contagious. THIS IS THE YEAR TO TAKE ACTION! Many of you already have planned fundraising events – are they listed on the IRSF calendar? If not, please fill out this form and email to Jenni Grammer at This e-mail address is being protected from spam bots, you need JavaScript enabled to view it . Also check the website calendar for events in your neck of the woods! IRSF events are growing and growing. Do you have an idea for an event and need help getting started? That’s what the IRSF Staff is here for! Reach out to us, let us help you. Contact the IRSF office at 1800-818-7388 (RETT) to ask questions, get information and answers or if you just need help brainstorming.

Your help is our hope. Get involved!

Autism Speaks Announces New Science Funding

Autism Speaks is pleased to announce its first research grants of 2011 totaling more than $1.4 million. One of the projects, the result of a Suzanne and Bob Wright Trailblazer Award, is a cutting edge study on gastrointestinal issues, which affect many children and adolescents with autism. Read more about the other funded studies here.

-e-Speaks, April 15, 2011

By: Clifford Fry, Chairman, Family Advisory Board

The hands! They are so similar in spirit to the hands that are such a part of Rett syndrome. They are not clasped, for they are reaching to the sky for a nearby butterfly -- hands of hope and beauty. This is what one sees when entering Morgan’s Wonderland, which is the first amusement park in the USA, and I suppose the world, designed for the handicapped.

Read More...

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