October Awareness Month – Raise Your Voice TODAY!

October is Rett Syndrome Awareness Month

Let’s raise our voices in October to bring a spotlight to Rett syndrome.  Our children deserve nothing less than to be heard and to be counted!  Check in with IRSF daily on Facebook www.facebook.com/RettSyndrome to see who’s doing what, and to pick up facts to share.

Click here for ideas and support materials tailored just for you!  Together we are making a difference.  We can’t wait to hear what you are doing to Raise October Rett Syndrome Awareness!  #ORSAM

Thank you,

Featured Angel with a Twist!

In honor of October Rett Syndrome Awareness Month, we are honoring some of the many beautiful faces of Rett syndrome that have graced our Featured Angels page over the years. Download this Facebook cover image, the post and share with your friends and family during the month of October to spear awareness far and wide in support of their Angel wish for treatments and a cure for Rett syndrome!

  • Click here to read up on all of our past Featured Angels
  • Click here to download the Featured Angel ORSAM Facebook Cover Image.
  • Click here to download the original ORSAM Facebook Cover Image

The Featured Angel’s intent is to give our Rett community an introduction to a few of the Rett angels for whom we are fighting to turn Research into Reality. We invite you to submit your Featured Angel story and picture to lgeglein@rettsyndrome.org.

New video to Share in October Raises Awareness of Links Between Rett Syndrome, MECP2 Duplication, and Other Disorders

Joseph Mendoza, father to Levon with MECP2 Duplication, has been busy once again bringing our story to life.  IRSF invites you to watch and Share his new 3-minute video that speaks to the important role that MECP2 plays in so many neuronal disorders; why funding research is critical right now; and weaves throughout the Hope of affected families everywhere. Thank you Joseph and family.  Your Help is Our Hope.


October brags of more Strollathons than any other month!  With a total of 9 Strollathons in October alone, families across the country are showing their commitment to finding treatments and a cure!  The Strollathon, IRSF’s signature event, is more than a hope-filled day with fun family entertainment, refreshments and mingling; it’s a chance to bring together all the families and friends affected by Rett syndrome coast to coast.  The Strollathon program raises over $1 Million each year to fund cutting edge research and has propelled IRSF to where we stand today: the global leader in the effort to finding treatments and a cure for Rett syndrome. 

Visit www.strollathon.org to find the event in your area and register to start fundraising today! Good luck to all of our upcoming strollathons including  Georgia (chaired by Ashley Alexander), Portland, OR (Chaired by Joey Razzano), Lakeland, FL (chaired by Charity Proffit), New Jersey (chaired by Leslie Greenfield), NorCal (chaired by Erica Robertson), SoCal (chaired by Sherri Brady), National Capital (co- chaired by Laura Gomez & Lisa Ruane), Coconut Creek, FL (chaired by Henry Perez) and Grapevine, TX (chaired by Vanessa Peace)!

Thank you to each and every one of you who have joined the Strollathon program! Your fundraising efforts make it possible for IRSF to continue to fund essential research grants, including the two  disease-modifying clinical trials

Please contact events@rettsyndrome.org for more information regarding the Strollathon program and bringing a Strollathon to your community. 

Rett Racers: 31st El Tour de Tuscon presented by Casino Del Sol Resort (El Tour)

The International Rett Syndrome Foundation will make its debut this year as a beneficiary of 31st El Tour de Tucson presented by Casino Del Sol Resort (El Tour) which takes place November 23 in Tucson, AZ. El Tour is a recreational cycling event attracting more than 9,000 individuals from across the nation and beyond.  Our goal is to recruit 30 individuals for the Rett syndrome cycling team. Participants can choose from a variety of distance rides to match their ability level:  42, 60, 85 or 111 miles.  All rides end in downtown Tucson at Armory Park. For more specifics on the routes, please visit Perimeter Cycling’s El Tour homepage.

November 23rd: Whether riding or not, there will be a host of things to do on the big day: visit exhibitor booths, try out tasty food and enjoy the live entertainment.

Registration and fundraising:

  • Your entry fee covers the cost of event expenses ($120). 
  • Riders from around the world take on two challenges: the stamina to complete a distance ride and raising the money needed to fund research for treatments and a cure for Rett syndrome.
  • We ask you to set a goal of raising $500 or more and we will help you reach your goal by providing you with a personal fundraising page on our web site. It’s easy and it’s fun.

Thank you for helping us in the fight to end Rett syndrome!
Click here to access the Waiver

The IRSF Rett Racers program continues to grow! Rett Racers with their own registration number sign up for the event of their choosing (half or full marathon, triathlon, bike event, obstacle course, and more) and then register atwww.rettracers.org to fundraise online for IRSF and to connect with other Rett Racers signed up for the same event. Tell everyone you know who likes to run and race about the Rett Racer program.  To qualify for Rett Racer tee shirts and other apparel from Nike refer to our incentive program

Help make the Rett Racer program the new signature event that supports research to develop a treatment for Rett syndrome.  Questions? We have the answers; contact events@rettsyndrome.org today or call 800-8187388!

Clint Black to Appear Exclusively on Chideo 
in Support of IRSF

Country music star and IRSF supporter, Clint Black, agreed to appear exclusively on Chideo to interact with his fans, while raising much needed funds for Rett syndrome. Chideo (Charity + Video) is a new dynamic social media platform created to help nonprofit organizations raise money by combining cutting-edge technology, the spirit of giving, and the power of entertainment. This groundbreaking “donate-to-watch” video platform will enable celebrities, industry- and thought-leaders to raise money for their selected charities by offering exclusive content to fans and followers who may, in turn, pose questions of their own, rally support, and donate to watch exclusive Chideo content. Chideo has launched in Beta on August 19 and is expected to fully roll out by November 2013.

Click here to watch Clint’s message and suggest questions for him to answer.

Click here to see the IRSF profile on Chideo.

The Combined Federal Campaign

The Combined Federal Campaign (CFC) is the government’s version of the United Way.  If you or someone who know works for the Federal Government, or is in the Armed Services either in the US or abroad please consider making a donation to IRSF thru your division’s Combined Federal Campaign.  You will find us under Rett Syndrome and our campaign code is 11046.  Please encourage friends and family to consider directing their CFC pledge to IRSF!

The United Way

If it’s October, it must be United Way appeal time. While we are not an “official” agency  with any of the 1,000+ United Way organizations in the country, many will accept donor directed gifts.  On the donor designation line, please write in our Employee Identification Number:  31-1682518.  If there is room to include our name and address, please include that as well, but they are able to identify us from our EIN.  Please encourage friends and family to consider directing their United Way donation to IRSF.


Investigator Spotlight: Beth Stevens, PhD, Boston Children’s Hospital

The first Investigator Spotlight of this fall is focused on Dr. Beth Stevens, an Assistant Professor in the FM Kirby Neurobiology Center at Boston Children’s Hospital.  As a new IRSF investigator, Dr. Stevens was recently awarded a 2012 Basic Research grant for the project titled “Role of Microglia at Synapses in Rett syndrome”.  The central goal of her research is to understand the role of glia in the brain and the mechanisms underlying neuron-glia communication in health and disease, and with this grant she will focus on what glial cells are doing or not doing in the brains of those affected by Rett syndrome.

Click here to read more.

Notable Honors:  Dr. Huda Zoghbi awarded the 2013 Pearl Meister Greengard Award

Congratulations to Dr. Huda Zoghbi, a long time champion for Rett syndrome research!  Dr. Zoghbi has been awarded the prestigious Pearl Meister Greengard Prize, awarded annually by The Rockefeller University.  As many of our Rett community knows, Dr. Zoghbi made a groundbreaking discovery for Rett syndrome in 1999, where she and her colleagues identified that mutations in the MECP2 gene caused Rett syndrome.  She is a professor in the Departments of Pediatrics, Molecular and Human Genetics, Neurology and Neuroscience at Baylor College of Medicine in Houston, Texas; director of the Jan and Dan Duncan Neurological Research Institute at Texas Children’s Hospital and an investigator with the Howard Hughes Medical Institute.

Dr. Zoghbi will be presented the Prize on the evening of Thursday December 5, 2013.  The Pearl Meister Greengard Prize was created through the vision and generosity of Nobel Laureate and Vincent Astor Professor Paul Greengard and his wife, the sculptor Ursula von Rydingsvard.  Dr. Greengard donated his monetary share of the 2000 Nobel Prize in Medicine to Rockefeller and, in partnership with generous supporters of the University, created this major international prize. The prize is named in memory of Dr. Greengard’s mother and provides recognition of the accomplishments of women in science and includes a $100,000 honorarium.

Click here to read the press release.

IRSF Family Support Board – Application deadlineOctober 25th

You walk the Rett syndrome road.  You know what a family needs to feel supported, hopeful and to become a true part of the momentous wave towards clinical trials, treatments and a cure.  If you want to be part of the magic that IRSF performs every day to support families and advance research, then we invite you to click here and apply now to be part of the 2014 IRSF Family Support Board.

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