October 11, 2010

To The Rett Syndrome Community: October Rett Syndrome Awareness Month (ORSAM) is Here

October was kicked off with our press release on the recent awarding of $1.5 million in research grants! Monday, October 4th was the 11th anniversary of the discovery of the Rett syndrome gene, IRSF issued a press release on a study that shows recovery of breathing function in Rett syndrome mice. The study was funded by IRSF and the investigator has just received follow-on funding in the recent grant cycle.

• October 1st, IRESF received official word from Pepsi that our projects, Turn Research into Reality for Thousands of Girls with Rett Syndrome, is officially a finalists from the month of September voting, meaning that as long as the review process does not raise any flags, Rett syndrome will be the official recipient of a $250K Grant from the Pepsi Refresh Project! Winners will officially be announced on October 23rd on the Refresh Site.
• Friday, October 4th, parents assembled to be part of the Today Show audience in NYC; Tony Horton was in attendance as were many Tri-State Area Rett supporters. This event was organized by Maggie Wurm, the IRSF Regional Representative of Connecticut. The audience heard a Rett syndrome mom describe Rett syndrome and IRSF, announce the winning of the Pepsi Refresh Challenge and how to access our website. While at the Today Show, Ariane McMahan, wife of Board Member Christian McMahan was selected for a makeover on the Today Show later in the morning program! This link will access a great clip.
• KC Byers, a RTT dad from Florida, is bike riding across the southern U.S. on a “Ride Across America” to raise awareness of Rett syndrome. Text the message "RETTRIDE" to the number 90210 to have updates sent to your phone.
• The first weekend in October, six strollathons were held, the largest, the Stroll across Texas, was Chaired by Board Member, Kenna Seiler. Among ORSAM highlights were a Clint Black concert benefiting IRSF in Houston. KC Byers stopped in along his Rett Ride Across America.
• The 10th annual Boston Festival of Food and Wine is being held October 21st. The event is Chaired by Board Members Mike Joyce and Christian McMahon and former Executive Director Chuck Curley. Please wish them well and lend your support to this signature event.
• The first Annual South Florida Stroll-a-thon is being held October 30th, Board Member Barry Reinhart and Henry Perez organized the event.
• A national letter writing campaign supported by Board Member Karen Nussle and led by FAB Advocacy Chair Shawn Mansfield, will start the third week of October. The campaign is focused on asking the House Appropriations Committee to support the HHS Subcommittee on Appropriations recommendation, which includes the $180,000 earmark for IRSF paid through the CDC.

Additional items of interest:

• An updated, lay version of the translational research white paper is attached, your comments are encouraged and welcome.
• Our Chief Scientific Officer spoke at the European Rett Syndrome Congress.
• IRSF’s Landscape Analysis is noted in an upcoming report on developing therapies for rare disease, which is being issued by the Institute of Medicine (IOM). The IOM is the health arm of the National Academy of Sciences.

In closing, it is October Rett Syndrome Awareness Month! Please do everything you can to ask friends, colleagues, staff in your company, family and neighbors to generate awareness for this rare and devastating disorder that effects the lives of our loved ones; all support is needed and important.

Best Wishes,

Stephen Bajardi
Executive Director
International Rett Syndrome Foundation

October Awareness Month

October marks 11 years since the landmark discovery, made in the laboratory of Dr. Huda Y. Zoghbi, that a single gene, MECP2, is responsible for the majority of cases of Rett syndrome.

October marks official Rett Syndrome Awareness month. Our time for action is now! 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. We need the world to embrace our children and help us Turn Research into Reality for thousands of angels with Rett syndrome. We would like to encourage you, with our support, to get out there and spread the news about Rett syndrome. This month is dedicated to helping you do your part in October to educate your family, friends and community about Rett syndrome and our shared fight for a cure.

IRSF hosted a conference call in honor of ORSAM in an effort to make families aware of all of the wonderful things they can do to gain awareness and raise funds for Rett syndrome during ORSAM. This call was geared towards showing families around the country how to make this October the best yet. Visit the ORSAM page to hear motivating stories, tips on getting started and to learn how IRSF is able to support you in the activity that best fits you and your family! Be as involved as you want! Simply take part in an already designed event or create your own with the help of IRSF staff!

Listen to the audio recordings of conference calls (approximately 1 hour each) from 2009 and 2010 to get ideas on how YOU can make this ORSAM amazing!

2010's audio recording
2009's audio recording

IRSF offers so many different ways for you to get involved. We are here to help you be successful! Read on to find out more, and thank you for your commitment. Each of you makes this community stronger.

See what events are happening near YOU!

GIANT Progress in New Jersey!

New Jersey Regional Representative, Leslie Greenfield, received word from the Senate Presidents office in Trenton that New Jersey’s Rett angels are invited to the Senate's last session on Monday, October 18th, to receive a Senate proclamation on the Senate floor!

BE A PART OF THE ACTION! Start rounding up your girls because we have a BIG day coming!

NEW - Investigator Spotlight: John M. Bissonnette, MD of Oregon Health and Science University

By Jim Keller

Note: The IRSF Spotlight’s intent is to give our Rett syndrome communities an idea of who IRSF’s funded investigators are both as a person and a scientist working to make Research a Reality.

Last week IRSF reported on a study published in the journal, Proceedings of the National Academy of Sciences, which focused on how a team of researchers based in the U.S. and UK revealed that they were able to halt the potentially lethal, breath holding episodes associated with Rett syndrome. These investigators were none other than Dr. John M. Bissonnette and his collaborator Dr. Julian FR Paton of the University of Bristol, co-Principal Investigators (co-PIs) on the recently announced IRSF Research Grant, titled “Pharmacological treatment of respiratory disorders in a mouse model of Rett syndrome.” In addition, Dr. Bissonnette was also the recipient of one of the first IRSF Help Accelerate Rett Therapeutics (HeART) Awards, titled “Serotonin and small molecule treatment of respiratory disorders in a mouse model of Rett syndrome,” and is a member of IRSF’s Scientific Review Board (SRB). With his numerous contributions to the Rett community, we thought it was time to introduce Dr. Bissonnette who was kind enough to answer a few questions on the eve of Rett syndrome Awareness Month.

Dr. Bissonnette studied medicine at McGill University in Montreal, Canada, during which he spent a month in a basic research lab as a first year student. He was assigned to a group working on encephalitis, which served as his introduction to the central nervous system. As a resident he again had basic research exposure examining acid-base regulation in rhesus monkey fetuses. Following a post-residency fellowship, Dr. Bissonnette established a laboratory that studied control of respiration in fetal sheep until 1997, when the lab redirected to work with mice to take advantage of mouse genetics. RTT mice are unique in that they have a high incidence of spontaneous apneas and may lead to a greater understanding of a broad range of respiratory control disorders.

Click here to read the full interview.

Research Becomes a Reality for Rett Syndrome through New Funding

Cincinnati, (OH) - The International Rett Syndrome Foundation (IRSF) announced today that it will award an additional $1.5M in research grants, bringing the 2010 total to $2.15 million for innovative basic and translational research that moves treatments for Rett syndrome a step closer to the clinic. IRSF is the world’s largest private source of Rett syndrome research funding and with the addition of these awards the Foundation has cumulatively provided $23 million for Rett syndrome research.

Rett syndrome is an Autism Spectrum Disorder (ASD), characterized by distinguishing symptoms which begin to manifest in early childhood resulting in seriously debilitating neurological impairments in those affected. October 4th 2010 will mark 11 years since the landmark discovery, made in the laboratory of Dr. Huda Y. Zoghbi, that a single gene, MECP2, is responsible for the majority of cases of Rett syndrome. Since that time the pace of research has been rapid, resulting in recent work demonstrating genetic reversibility of the disease in mice. This year, regular research grant awards will be provided to the following exceptional scientific programs to further advance our understanding of the underlying causes of Rett syndrome:

• "Pharmacological treatment of respiratory disorders in a mouse model of Rett syndrome," John M. Bissonnette, MD and Julian FR Paton, PhD, Oregon Health & Science University and the University of Bristol UK
• "Epigenetic regulation of gene expression by MeCP2 in the mouse brain," Natalie G. Bérubé, PhD, University of Western Ontario
• "Disruption of experience-dependent dendritic spine plasticity in MeCP2 mutant mice," Wen Biao Gan, PhD, New York University, School of Medicine
• "Elucidation of Epigenetic Mechanisms in Rett Syndrome," Lisa Monteggia, PhD, University of Texas Southwestern Medical Center
• "Using ChIA-PET to unravel high order chromatin regulatory functions of MeCP2"," Yijun Ruan, PhD, The Genome Institute of Singapore, the National University of Singapore
• "MHC Class I molecules and receptors as therapy for Rett Syndrome?" Carla J. Shatz, PhD, Stanford University
• "MeCP2 in Cognitive Function in the Adult Nervous System," David J. Sweatt, PhD, University of Alabama at Birmingham
• "The study of Rett syndrome with Mecp2 T158A knockin mice," Zhaolan Zhou, PhD, University of Pennsylvania

Dr. Huda Zoghbi whose lab discovered the gene responsible for Rett syndrome commented on the caliber of this year’s awardees saying, "I am thrilled to learn that Dr. Carla Shatz will examine visual system plasticity in a mouse model of Rett syndrome. It is important to test this hypothesis given the role of MHC Class I proteins in activity-dependent plasticity during critical developmental periods. Beyond testing this hypothesis, bringing Carla into the Rett field is a huge boost to the neurobiological studies on this disorder." Dr. Shatz was formerly President of the prestigious Society for Neuroscience. This award is made in honor of Grace Reddington.

IRSF also awarded several post-doctoral fellowship training awards that will provide support for outstanding young investigators for the following important scientific projects:

Elena Amendola, PhD, European Molecular Biology Laboratory, "Model of CDKL5 Rett syndrome"
Supported in partnership with the International Foundation for CDKL5 Research

Jing Han, PhD, Baylor College of Medicine, "Investigating the Role of the Neuroendocrine-Hypothalamic System in Rett Syndrome"

Keerthi Krishnan, PhD, Cold Spring Harbor Laboratory, "Role of MeCP2 in the maturation of neocortical GABA interneurons and critical period of plasticity"

Miriam Kron, PhD, Case Western Reserve University School of Medicine, "Synaptic mechanisms of apnea in Rett syndrome"

Dr. Katheryn Elibri-Frame President of the newly launched International Foundation for CDKL5 Research (IFCR) commented on the partnership award to Dr. Amendola saying, "Our shared goals and research endeavors will benefit children affected by both CDKL5 and Rett syndrome and we are proud to partner with IRSF in co-funding this project. Finding a cure is our top priority and this is a critical step forward."

New Translational Research Awards Announced

In addition to the regular research awards, IRSF recently launched "Research to Reality" an aggressive fundraising campaign spearheaded by IRSF’s HeART and ANGEL grant awards which provide funding for drug discovery, development and testing. The first HeART grant awards will provide seed funding for the following early stage drug discovery programs:

• "Serotonin and small molecule treatment of respiratory disorders in a mouse model of Rett syndrome," John M. Bissonnette, Oregon Health & Science University
• "Novel screening methods for quantitative, homeostatic regulation of MeCP2," Rajiv Ratan, MD, PhD, Burke Medical Research Institute, Weill Medical College of Cornell University
• "A high throughput small molecule screening platform for potential Rett syndrome MBD mutation therapeutics," Yi Eve Sun, MD, PhD, University of California, Los Angeles
• "Evaluating carbonic anhydrase inhibitors as potential treatments for Rett syndrome," Liang Zhang, MD, PhD, University Health Network, Toronto Western Hospital

Earlier this year, IRSF announced funding of the first ANGEL award totaling $446,000 to support a program testing new treatments for breathing dysfunction in Rett syndrome to David Katz PhD, Case Western Reserve University.

Dr. Antony Horton IRSF Chief Scientific Officer commented, "Together these new basic and translational research awards are beginning to fulfill the promise of our ‘Research to Reality’ campaign which seeks to move discoveries out of the lab and translate them into new medicines for Rett syndrome." Dr. Horton added "In addition to this announcement IRSF expects to fund further meritorious research in December of this year".

All grants recommended for funding have been subjected to a rigorous peer-review process and support IRSF’s solid commitment to fund high-quality research programs.

About Rett Syndrome Rett syndrome (RTT): Rett syndrome is a developmental neurological disorder, occurs almost exclusively in females. RTT results in severe movement and communication problems following apparently normal development for the first six to 18 months of life. Characteristic features of the disease include loss of speech and purposeful hand use, repetitive hand movements, abnormal walking, abnormal breathing, slowing in the rate of head growth and increased risk of seizures. Current treatment for girls with RTT includes physical and occupational therapy, speech therapy, and medication for seizures. There is no known cure for RTT. In 2007, researchers heralded a major breakthrough by reversing RTT symptoms in mouse models. RTT is considered a "Rosetta Stone" that is helping scientists understand multiple developmental neurological disorders, and shares genetic links with other conditions such as autism and schizophrenia.

About the International Rett Syndrome Foundation: IRSF is the world’s leading private funder of basic, translational and clinical Rett syndrome research, funding over $23M in high-quality, peer-reviewed research grants and programs to date. Annually, IRSF hosts the world’s largest gathering of global Rett researchers and clinicians to establish research direction and priorities while exchanging ideas and the most recent information. IRSF is the most comprehensive non-profit organization dedicated to providing thorough and accurate information about Rett syndrome, offering informational and emotional family support, and stimulating research aimed at accelerating treatments and a cure for Rett syndrome and related disorders. IRSF has earned Charity Navigator’s most prestigious 4 star rating. To learn more about IRSF and Rett syndrome, visit www.rettsyndrome.org or call IRSF at 1-800-818-RETT (7388).

About the International Foundation for CDKL5 Research: The International Foundation for CDKL5 Research (IFCR) was incorporated as a non-profit entity in September of 2009. The idea culminated from a group of dedicated parents of CDKL5 children, who dared to dream of something life changing for their children - a cure. The parents realized there was a desperate need for education and research, and this could not be completed without funding. They decided to combine their talents and resources to establish a non-profit foundation to help meet these financial needs. IFCR is committed to collaborating with leading scientists and researchers from around the world who are dedicated to finding a cure for CDKL5.

The majority of funding for IRSF research grants comes from private donors such as you, your family members and friends. Every dollar counts. Every dollar makes a difference in the lab of a qualified researcher.

If you or someone you know is hosting an event in honor of a special Rett angel please let us know – we can advertise it on our website calendar and flashes! We can also help you design and send out your invitations, save the dates, email blasts and so much more. Or, take part in our Care and Cure Café or our Phantom Tea fundraisers. These are great ways to get personal with raising money for the cause. Please email all event details to Jenni Grammer at jgrammer@rettsyndrome.org. IRSF can offer plenty of support for your event – call the office or email us for more details!

2010 Phantom Tea
	For those of you that have participated in the past, you know the drill! Send us your orders and we’ll send you your Phantom Tea invitations! For those of you who are new to this IRSF fundraiser, Phantom Tea is a virtual tea party for you, your friends and family to hold in honor of the Rett angel in your life! It’s a great way to hold your own fundraiser without the hustle and bustle of hosting an actual event. Each tea packet comes with tea invitations/envelopes, contribution cards/reply envelopes, donor reply postcards, thank you cards/ envelopes and of course…tea bags! Each kit has 10 sets. You can order as many as you wish! Spread the word and order your 2010 Phantom Tea materials by filling out the attached order form and mail in or email it to jgrammer@rettsyndrome.org.
The IRSF Care and Cure Café
	Many of you have asked for the ability to host an online fundraiser so responded by creating the IRSF Online Café! We have made it even easier for you to give something special to the Rett angel who has touched your life. Families from all over the world have created Care and Cure Café pages for their Rett angels. The toasts that family and friends have made are so touching and each "drink" purchased has helped us get one step closer to finding treatments and a cure for this devastating disorder. Join us as we share stories and pictures of the beautiful girls and women that have become a part of the IRSF family. Please contact jgrammer@rettsyndrome.org for details.

Merchandise Sale

October Awareness Month is a great time to purchase some new Rett syndrome awareness gear for you, your family and your friends! Starting October 1st, use the coupon code, "ORSAM" to receive a 20% discount off certain IRSF merchandise! An IRSF favorite, the "I love someone with Rett syndrome" T-shirt, is back in stock! Get 20% Hats, Magnets, Lapel Pins, the Love Someone T-shirt and the IRSF National T-shirt! Be sure to get yours before the sell out AGAIN. Don’t wait! Use the coupon code "ORSAM" to receive your 20% discount during October Awareness Month!

Governor Proclamations

In support of October Awareness Month, Governors in several states honor our efforts by signing proclamations declaring October to be Rett Syndrome Awareness Month in their states. The Advocacy and Awareness Committee of IRSF’s Family Advisory Board has made it their goal to increase the number of states whose governors declare October to be Rett Syndrome Awareness Month. Heroic efforts have been made in an attempt to obtain these proclamations, and some are already in hand. Proclamations are meant to be used to raise awareness within a state, facilitate news media coverage and to support local fundraisers and education efforts. IRSF encourages you to incorporate them when appropriate into your advocacy efforts. We are supporting and tracking the efforts to procure proclamations in each state. Contact the office at 1-800-818-7388 for more details!

The Combined Federal Campaign

IRSF received over $47,000 in pledges in the 2010 CFC campaign and the 2011 campaign continues thru November. Please share our CFC Code Number: 11046 with family and friends. If you know of a CFC Fair in your area or workplace and are able to secure table space, the foundation has lots of materials for you to distribute. Please call the office at 1-800-818-7388 if you need any materials.

United Way

United Way campaigns continue through the fall as well – While we don’t have a United Way code, many UWs will accept donor directed donations. Just write our EIN – 31-1682518 on the donor designation line –it never hurts to add our name and address if there is room – and in many cases the UW will accept the donation and direct it to IRSF.

Sunday’s Angel

Sunday’s Angel is a new feature where IRSF spotlights a Rett angel once a week on the IRSF Facebook as well as on this page! If you would like IRSF to spotlight your Rett angel, email Lisa Hayden @ lhayden@rettsyndrome.org! This page is dedicated to showing off these amazing girls that have taught us so much.

Meet Riley Steventon (October 2, 2010):

Hi, my name is Riley Steventon and I am four years old and I have Rett syndrome. Some days Rett syndrome has me too, but I am determined to not let those days out way the days that I have it. My mommy and daddy help me with that a lot. Before they even knew my diagnosis, they had me in therapies to help. Since then I have learned how to walk, how to use my communication devices, and much more. I attend school and am even in an inclusion classroom. Mommy volunteers in the class at least once a month (I honestly think it helps her feel more comfortable with me gone all the time). Daddy does as much with me as possible too. Sometimes it’s harder than others though because my daddy is in the army and has to go away for more than a year at a time (like when I got my diagnosis, he was gone then, and he is gone again right now). People always say to mommy and daddy that it must be hard to deal with the diagnosis and all that it encompasses, but they always tell everyone that this is just how I am and since I am an only child, that they don’t know what it’s like to raise a typical child. They think that seems harder! Besides, I am their little angel and they love me just the way that I am. They are always telling people about me, face to face, newspapers, and even magazines. I know that they are proud of me, and will always continue to educate people on Rett syndrome and me, because like I said, I am their little angel and they love me!

Sign Up and Take Action to have your voice heard in Washington; Become a Rett Syndrome Advocate!

Become a Rett Syndrome Advocate!

October Rett Syndrome Awareness Month is our time to rally the community to raise awareness and funds for the Rett syndrome cause. We are going to take advantage of our recent success to increase our advocacy efforts and keep our cause foremost in the minds of our elected federal representatives. Your voice has power and influence! We were all “In It to Win It” for the Pepsi Challenge, and we are using that energy to help IRSF secure the Rett syndrome advocacy agenda in Washington DC.

In the coming week, IRSF will begin a letter writing campaign to encourage Congress to approve the House HHS subcommittee on appropriations budget recommendation which includes our much needed CDC earmark for Rett syndrome and the National Institutes of Health (NIH) budget. With the coming election there will be new faces in Congress. Through letters, calls and visits the Rett syndrome community will make new friends, engage old friends and make sure we are known to elected officials who make decisions affecting Rett syndrome.

The first step in this process is to sign up and join our advocacy network. Just do this one step today! It’s really very easy– and there’s no need to enter a password to reach this section of the website. Just click on the link below to get started. After entering your name and contact information the website will automatically and instantly tell you the name of your state’s US Senators, your district’s US Congressman, the governor of your state and your local State House Senator and Representative. You will have taken your first step to becoming a Rett Syndrome Advocate! Monday, October 18 we will launch the letter writing campaign to Congress.

Today, we are asking everyone to sign up!

Currently we have 200 people registered on the Advocacy website. Our goal during October – Rett Syndrome Awareness month - is to register an additional 1000 people before the end of the month. This announcement goes to over 8,000 email addresses and in a short time, we need 2000 of you to subscribe. That is our first step to making Congress more aware of Rett syndrome. With your help, you took action and won the Pepsi Challenge, we can certainly win this challenge too!

www.rettsyndromeadvocacy.com/register.aspx?Page=MyProfile

Please call or write Cara Leighton or Mary Joyce Griffin if you have any questions. 1-800-818-7388.
cleighton@rettsyndrome.org
mgriffin@rettsyndome.org

EDUCATE YOURSELF – IRSF Family Conference

ANNOUNCING! IRSF 2011 FAMILY EDUCATION AND AWARENESS CONFERENCE

The IRSF annual education conference is the only one of its kind where parents and professionals of girls and women with Rett syndrome come together from all over the world, under one roof, to learn the most current recommended care and advocacy strategies for every stage of life, and hear first-hand the latest in research and clinical trials. Experts, exhibitors, and entertainment make this the most anticipated family event of the year.

Save the Date and Start Planning Your Travel Now for the 27th annual conference! Registration and Program details will become available January 2011.

Memorial Day Weekend, May 27-30, 2011*
The Boston Park Plaza Hotel
Boston, MA
www.bostonparkplaza.com

*Popular demand for one annual conference, coupled with greatly negotiated rates over Memorial Day weekend, and partnership with Boston Children’s are enabling IRSF to invite you to join us in one of the countries most loved cities, at the grand historic Boston Park Plaza hotel, with no year-over-year registration fee increase! See you there!

"Mental Retardation" Will No Longer Be a Part of Any Federal Rule or Law

Tuesday, October 5, 2010, President Obama signed S. 2781, Rosa's Law. Although this new law does not change any services for person's with disabilities, it still represents a historic change for national disability policy.

From now on, the phrase "mental retardation" will no longer be a part of any federal rule or law, whether it is related to education, health or labor. It will be replaced with the phrase "intellectual disabilities" everywhere it currently appears.

This bill was originally introduced by Sen. Barbara Mikulski (D-MD). She named the bill "Rosa's Law" after a young woman in her state that successfully advocated for the elimination of the phrase "mentally retarded" in Maryland state law.

White House Press Secretary: see S.2781

You can read the full text of this new law at the Library of Congress website.

There is also a statement on Senator Mikulski's web site.

This is an important milestone on the road to inclusion and acceptance for Americans with disabilities. Please join us in celebrating this moment, and feel free to share this message with others in your community.

It's STROLLATHON SEASON! Find an event near you!

As we get into the heart of fall with October Awareness Month approaching, many families across the country are gearing up for the Strollathon happening in or around their community! IRSF and dedicated volunteers all over have increased the number of Strollathons from 15 last year to over 20! The Strollathon, IRSF’s signature event is a not only a hope-filled day with fun family entertainment, refreshments and mingling, it’s a chance to bring together all the families affected by Rett syndrome coast to coast. The Strollathon program has raised over $2 Million each year to fund cutting edge research and has propelled IRSF to where we stand today – so close to finding treatments and a cure for Rett syndrome.

You may have participated before or maybe this is your first year, either way, this is the year to get involved! We can’t do this alone – we need you, your family and your community to join us in our fight to find a cure for all the girls and women battling Rett syndrome. We are challenging families from all to create a Strollathon Team or Teams for their Rett angels, plan a smaller event in your area or just participate virtually by hosting an online fundraiser at www.firstgiving.com/rettsyndrome! If each family and their teams of friends, family and neighbors committed to raising at least $2,000 can you imagine the difference we could make?!

Why Fundraise? Why the Strollathon? See what IRSF Family Advisory Board Member Mickie McCool says Fundraising for IRSF means to her!

Want to participate, but cannot attend a Strollathon? For those families not able to attend a Strollathon in your state, you could consider participating virtually through our First Giving Strollathon Pages – to find the link for the event near you go to www.rettsyndrome.org and click on "Strollathon Donate Now". You can also participate by creating a smaller "wrap around event." Wrap around events are crucial in helping to increase revenue for Strollathons. IRSF can provide you with a list of wrap around event ideas that will be easy, fun and lucrative!

Here is a testimonial from a mom in Ohio who hosts a smaller wrap-around event each year to support the Cincinnati Tri-State Strollathon:

"Last year was the first year of our 'mini-stroll.' We had come to the Cincinnati stroll for a couple of years and thought maybe we could do something closer to home to help raise awareness and money. Our Allie was 7 then, and we had lots of people who supported us and wanted to be involved, but Cincinnati is 3 hours away for us and not easy for our friends and family to get there.

Our church decided that they wanted to put it together, so we had lots of help, but it was very easy to do. We decided on a date and secured a shelter at our local park. Jenni Grammer was so great about sending pamphlets to pass out and banners to hang for the event. Church members volunteered to make cookies and donate water bottles and punch. We made posters that each had a fact about RS and put them on stakes. Jenni also sent collection envelopes so that people could collect donations before the event.

The day of the stroll, we put up the posters along the route we would be walking and set up a table for cookies and drinks. We had a place for donations and collection envelopes with someone in charge of that area. Everyone met at the shelter and our pastor offered a prayer before we began our walk. We had over 100 people there and raised just over $5,000.00!! We even had another little RS girl attend! It was such a great event we are definitely doing it again this year!"

- Traci, Columbus, OH

Every Strollathon across the country is for everyone fighting Rett syndrome. We can fight this TOGETHER; TOGETHER WE ARE BETTER, but we need your help to expand the scope and awareness of these very important events.

Your help is our hope. It is up to you to decide how you wish to participate. Think about what best fits your life right now. We hope this will be the year you will become involved—or take part again! We have won many battles up to this point, but there is still one very important one we must conquer. Won’t you join the fight?

Pepsi Refresh Project

Support Rett syndrome's 2 NEW projects

Visit www.rettsyndrome.org/pepsi to learn more.

1. Vote with your Pepsi Refresh account.

2. Vote with your Facebook account! Vote For Rett Clinics Vote CDKL5 Research

3. Vote via Text: Text 103134 to 73774 for Rett Clinics; Text 102973 to 73774 for Cure CDKL5 Note: Standard text messaging rates apply

Support K.C. Byers in His Rett Ride Across America

Hi, I am K. C. Byers, a 54 year old cancer survivor. After having 7 stints placed in my heart in June 2009 due to Coronary Artery Disease, I decided to get into shape through cycling. I am the father of 5 children, my 16 yr old step-daughter Katelyn is my "silent angel." She has a debilitating genetic disorder called Rett Syndrome.

This crippling developmental disorder primarily affects girls who progress normally until 6 to 12 months of age. Then they begin to lose acquired motor skills and the ability to communicate. By the age of three years, girls with Rett Syndrome face many lifelong disabilities. Due to their severe apraxia, they are frustrated by the will and desire to move but have great difficulty doing so. Additionally, many must deal with seizures, scoliosis, breathing issues, complications with swallowing and chewing. They all require complete and total care 24 hrs a day. They are literally trapped within their bodies…………. This would frustrate anyone beyond belief! It is out of this frustration that I decided I needed to do something about it.

In November of 2009, I began to plan and train to ride my bicycle across the United States to raise awareness and funds for the thousands of Rett girls. I will depart Jacksonville, Florida on Sept. 25th and ride 100 miles per day across the southern portion of the country for approximately 30 days, with hopes of arriving in Santa Monica, California no later than October 31st, which is National Rett Syndrome Awareness Month. Please help me and my team raise the money that will fund the needed research to identify a treatment or cure for these very special silent angels.

Get Updates Sent to your phone! Text the message "RETTRIDE" to the number 90210.

Learn More at www.RettRideAcrossAmerica.com

Attention Texas Families

Join Us to Celebrate October As Rett Syndrome Awareness Month!!

LOCATION:
6701 Fannin Street, Houston, Texas
Clinical Care Center Building
Auxiliary Bridge-3rd Floor Crosswalk Area
Texas Children’s Hospital

DATE and TIME:
Thursday, October 14, 2010
11:00 a.m. until 1:00 p.m.
(Information provided about Rett Syndrome, Rett Team of professionals available for questions and answers, Kevin Black provide entertainment. Cookies and bottles of water provided.)

For Further Information:
Call The Blue Bird Circle Rett Center
832-822-7388 or toll-free at 1-888-430-7388

A Cookbook to Benefit Rett Syndrome

In the spirit of giving back, a book club decided to put together recipes for a great cookbook to sell in which the proceeds would be donated to The International Rett Syndrome Foundation in support of funding research for Rett syndrome to help one of its members, Robin Diamond’s daughter Abby, who suffers from Rett syndrome, and thousands of girls like her. It is our hope that fundraising efforts such as ours will contribute to one day finding a way to reverse the symptoms of this devastating illness.

Please feel free to go on line to look over their "masterpiece." Much time and energy has been put into creating something special. You can view it at www.blurb.com/bookstore/detail/16142251. If you go to the bottom right corner of the link you will be able to increase the size of the page and read pages of the book. These recipes are truly awesome for those of you who entertain.

Holidays are right around the corner – what a perfect gift for someone who loves someone with Rett syndrome and loves to cook!

Regional Representative Program - serving families across the country

Have you gotten to know your Regional Rep? Click here to view the current list of Regional Reps around the country. This team of dedicated and compassionate people is ready to assist you in many ways—emotional support, information on programs and services, advice on how to get involved in your community or if you simply wish to talk…they are waiting to hear from you!

Interested in becoming a Regional Rep? The following states are currently vacant and waiting for the right person to step in—Indiana, Kentucky, Maryland, Minnesota, North Carolina, North Dakota, Tennessee and Wyoming. Learn more about the program and consider applying today!

Please contact Jennifer Endres if you have questions about the Regional Representative Program! jendres@rettsyndrome.org

Attention All Grandparents!

Have you joined the IRSF Grandparents Network? This Network consists of close to 200 sets of grandparents of girls and women diagnosed with Rett syndrome. It is a wonderful opportunity to get to know other grandparents, share stories, ask questions, learn more about Rett syndrome and feel part of a special and unique group of incredible people! The Network runs mainly through email with an occasional informational conference call that grandparents are welcome to dial into and listen in. Please register today!

Even if you are not yet officially registered as a member of the Grandparents Network, please consider taking part in a very EASY and FUN fundraiser! IRSF is requesting that all grandparents consider participating in the Phantom Tea during the fall in honor of their granddaughters and October Rett Syndrome Awareness Month. The Phantom Tea is a "virtual tea party" which you invite your family and friends to participate in. You will be sent everything you need to get started—invitations, donation forms, thank you notes and of course tea bags! The only things you need to do are come up with an invitation list and supply the stamps. The recipients will receive your invitation, which clearly explains the purpose, and will proudly be able to donate to IRSF, learn a little about Rett syndrome and sip a cup of tea in honor of your granddaughter! Please contact Jennifer Endres today to get started or if you have questions about the Grandparents Network! jendres@rettsyndrome.org

IRSF Networks are Expanding - join the Teachers and Therapists Network

If you are working with or have worked with a student with Rett syndrome, we want to hear from you! If you are the parent of a child with Rett syndrome, please let your child’s teachers and therapists know about this newly established network! Professionals will be able to communicate through various social media outlets as well as participate in informational and educational conference calls, custom planned depending on the needs and interests of those involved. Registered teachers and therapists can participate at the level that is right for them but can be assured there is a sounding board and others available for questions, brainstorming and sharing of ideas. Register today by emailing your name and information to jendres@rettsyndrome.org.

Join one of our many support networks today!

• The Parents of Males with MECP2 Mutations Network
• The Dads Network
• The Grandparents Network
• The Single Parents Network

Please contact Jennifer Endres if you have questions about any of our support networks! jendres@rettsyndrome.org

Your Online Vote can help our friends the Rocky Mountain Rett Association (RMRA)

Sears is giving away up to a BILLION reward points (value $1,000,000) to the winner of their online video contest. The Rocky Mountain Rett Association has submitted a video and will be awarded 75% of the prize with the help of your votes (the other 25% will go to St. Jude Children’s Research Hospital). The Sears competition is primarily for Sears points, but Sears will also payout 30% of the value of the points in cash. It is their intent to use the cash portion to help fund the start of a Rett Clinic in Colorado with pediatric neurologist Dr. Tim Benke, and use the balance of the points to purchase much needed items for the clinic and to support Rett families in need. “It is our intent to find the best use of these proceeds to help as many people in the Rett World as possible.”

How it works: Please follow the link below and vote for the video once per day through October 4th. The web site is a bit challenging; please persevere. They need to finish in the top 20 to get to the final voting stage. Once in the final voting stage, the finalists will compete for a win in October. Please support RMRA!

• The winner of the contest will get up to one billion reward points (worth one million dollars) divided as follows:
  • 1/4 to St. Jude Children’s Research Hospital (Sears’ corporate charity)
  • 1/4 to Rocky Mountain Rett Association
  • 1/2 to be donated to Rett Organizations through RMRA
  • The 1/2 will be grossed up by 30% to cover taxes; we intend this cash to be donated
• The total prize depends on the number of videos submitted. Right now this is approximately $540k.
• The top twenty videos as of Oct 5 will be entered in the final voting. This is our immediate objective.
• How to vote:
  • Go to the RMRA video at www.tinyurl.com/searsvideo
  • Enter your email address and the code displayed
  • The first time you vote, the system will send an email to confirm your address; you must respond to the link in the email to confirm your email and complete your first vote*
  • Subsequent voting is very simple. No login is required and you can go directly to the above link and input the email address and code. Each person / email can vote up to once per day

*Note: Please contact Todd Benjamin at webmaster@corett.org for any questions or assistance you may have regarding this competition.

* We have had some problems in getting the confirmation email. The system sometimes seems to ignore some addresses. We recommend using an alternative address. The confirmation email does not arrive immediately and may take up to 24 hours.

Event Calendar

Please Update Your Contact Information with IRSF

Please contact Lisa Hayden at lhayden@rettsyndrome.org or by calling 1-800-818-7388 to easily and quickly update your information.

Donations

Please remember when making a donation to find out if your company has a Matching Gift Program. These extra donations go a long way. Please send any matching gift forms to Cara Leighton at cleighton@rettsyndrome.org or by fax at 513-874-3020

Please send ALL DONATIONS to P.O. Box 706143 Cincinnati, OH 45270-6143.

Mail

Please send ALL MAIL to 4600 Devitt Drive Cincinnati, OH 45246.

“Fortune favors the brave.”

~ Publius Terence

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