Home 
About RSRT Rett Syndrome Curing Rett MECP2 disorders News Blog
| RTT WATCH is an email bulletin for new information relevant to Rett Syndrome and MECP2-spectrum disorders. Knowledge is power. Forward this e-newsletter and give your family, friends and colleagues an opportunity to register for RTT Watch and stay apprised of critical research developments. 
Issue No. 15 -- March 29, 2010 RSRT News
RSRT NEWS Rett Syndrome Featured on the Charlie Rose Show CLICK ON IMAGE TO VIEW THE PROGRAM  On February 23rd RSRT scientific advisor, Huda Zoghbi joined a distinguished panel of scientists for a discussion with Charlie Rose on the "The Developing Brain." Dr. Zoghbi, who in 1999 discovered the genetic cause of Rett Syndrome, presented the disorder as an example of disrupted neurological development. What a pleasure to see Rett Syndrome discussed not only on a national program but at a sophisticated level. Congratulations to Dr. Zoghbi and thank you for helping to boost awareness! Give our Girls a Voice Video Wins $10,000 for RSRT in the "Extraordinary Measures" Inspirational Quilt Online Contest 
The video debuted at the RSRT fundraiser held at the Diane von Furstenberg Studio in Manhattan last October. Thank you to Rachel and Jason Rothschild for submitting the video to the Inspirational Quilt and for designating RSRT as the recipient of the $10,000 winnings graciously donated by CBS Films. The video not only won the sweepstakes but also received the most outright votes of any of the 300 submitted videos. Thank you to everyone who voted - you made a difference! VOTING OPPORTUNITY TO HELP RETT SYNDROME RESEARCH 
Now that you've witnessed the power of people taking action we are going to ask you to take action one more time. Rice Works is sponsoring the Show Us Your Goodness contest. RSRT has already made it to the top 33 finalists. Only one vote is required. Please vote today! Eva Fini Fund at RSRT 
The Eva Fini Fund was recently established by Aimee and Albert Fini to support the research efforts of RSRT in honor of their daughter. The inaugural event of the Eva Fini Fund, "An Eva-ning of Hope," will take place at the Fini home in Campbell Hall, NY on July 24th. Anyone interested in establishing a Fund in honor of their loved one please contact us. 
RSRT will be hosting its inaugural Reverse Rett Gala Boston on June 3rd. Join us along with Boston's own Billy Costa (KISS 108-FM & TV Diner) and help us significantly expand our research portfolio. Science suggests that reversing Rett is possible. Translating the dramatic reversal will take a focused and aggressive effort. We welcome your engagement. Please contact event co-chair Bonnie Budd. Save the date and sponsorship information is available on our website. For information on these upcoming events please click below:  Lindon, UT - May 1, 2010 Contact: Syndi Knowlton Second Annual Day for Dani Benefit Tappan, NY - May 2, 2010 Contact: Rose Marie Swoboda Purchase Invitations or Announcements - Support Rett Research 
Ed Markus is a Canadian father of an adult daughter with Rett Syndrome. In thinking about novel ways to support Rett research he turned to his profession - printing. Ed has generously offered to donate 100% of all revenues from orders of invitations and announcements received from the Rett community. Anyone interested in taking Ed up on his gracious offer can contact him directly. 
The work of RSRT is sustained through the generosity of our donors. Today we would like to recognize one of our earliest and most committed supporters - Tax Free World Association and their charitable arm, TFWA Care. To date TFWA Care has donated $123,000 to RSRT's research effort. Founded in 1984, TFWA is the world's biggest duty free and travel retail association, providing high-quality exhibitions, acclaimed conferences and workshops, and in-depth market research to the industry. TFWA's commitment to the duty free and travel retail industry is summarized by its motto: By the trade, for the trade. As a non-profit-making organization - and with a membership of over 400 companies, including some of the world's best-known brands and suppliers of premium goods. TFWA's range of products and services are focused purely on delivering value to the industry. RSRT is honored to be among the charities that TFWA Care supports and extends our gratitude to the members of TWFA and TWFA Care. "As a non-profit making organization TFWA reinvests the surplus generated by its conferences and exhibitions in activities which benefit the duty free and travel retail industry. However, we are delighted to be able to also support a small number of charities and through them hopefully to make a difference to many lives," shares Erik Juul-Mortensen, the President of TFWA. 
Late last year Jeff and Sarah Canavan created The Kate Foundation to raise research funds in honor of their young daughter, Kate. They launched with a creative fundraiser - selling exclusive glass ornaments commissioned from Vermont glass artist Michael Trimpol. The ornaments were a smashing success and the Canavans presented RSRT with a $42,000 check. Jeff and Sarah share a few thoughts: "The 12 months surrounding Kate's diagnosis in March 2009 was a patchwork of anxious doctor's appointments, difficult news and confrontations with insurance companies. We wanted to do something positive to create some balance for our family, and we felt raising money for research was a great place to start. Autumn was already booked with several Rett syndrome dinners and galas, so we needed to find an alternate fundraising route if we were going to make an impact. During the summer, we were inspired by Kate's interest in the stained glass windows at Saint John the Baptist cathedral in Savannah and subsequently came up with the glass ornament idea. We introduced the ornaments to friends and family first and were encouraged by the brisk response. Initially, we expected to sell 300-400. By mid-November, the e-commerce website was active and friends and family started marketing the ornaments on their Facebook pages, as well as e-mailing friends and colleagues nationwide. It was equal parts inspiring and exciting to see the names of complete strangers from California and Iowa landing in our order inbox. The Vermont glass artists we'd commissioned to make the ornaments ramped up production and worked late nights and weekends to keep up with demand. In a period of about 8 weeks, we sold more than 1,600 ornaments and shipped them to over 30 states, as well as Canada and England. Friends and family helped pack ornament boxes for hours and volunteers hand-delivered many local orders in the middle of snowstorms. It was a moving experience for us to watch the force of friends, family and strangers collaborate to make the fundraiser a success. We are deeply appreciative to everyone who participated." The ornaments are still available for sale as they make a great gift for any occastion. We can hardly wait to see what novel fundraising idea the Kate Foundation undertakes next. Thank you for your passion and vision! For Parents and Caregivers of Children with Rett Syndrome Scoliosis in Rett Syndrome 
The latest RSRT blog post will deviate from our typical scientific pieces to focus on a clinical aspect of Rett: scoliosis. The thought of scoliosis surgery makes most parents weak in the knees. We hope to engage families and their network of doctors, therapists and educators in a dialogue about the potential treatment and – even better – the prevention of scoliosis in Rett Syndrome. Read excerpts from a conversation with Dr. Vishal Sarwahi, the Director of the Spine Deformity Service and a team member of the Rett Syndrome Center at Children’s Hospital at Montefiore, in the Bronx, NY, run by Dr. Sasha Djukic. A Spanish translation is available on the blog. Rett Syndrome Center Parent Gathering (Bronx, NY)  The next quarterly Parent Gathering at the Rett Syndrome Center at Children's Hospital at Montefiore will take place on Sunday, April 18, 2010 from 10am to 1pm. Fundoplication: Opinions on Efficacy  Stomach wrap operations may be more effective than acid suppression tablets in the treatment of severe acid reflux, according to a new Cochrane Systematic Review. The study shows a more pronounced improvement in symptoms shortly after surgery than with drug treatment. Gastro-oesophageal reflux disease (GORD) is a common chronic disease in which acid reflux causes heartburn, acid regurgitation, vomiting and difficulty swallowing. GORD can be treated by changes to diet and acid suppression tablets, but in the most severe cases a surgical operation called a fundoplication can be carried out. This involves wrapping part of the stomach around the lower part of the gullet. However, it is not certain whether this procedure is more effective than medication. The authors reviewed data from four trials, which together involved 1232 participants. Their conclusions relate to findings from follow-up up to one year after treatment. They found that fundoplication operations performed by keyhole surgery were more effective at reducing the symptoms of GORD over this timescale, but that there was little data available to indicate potential benefits over longer timescales. "There is evidence to suggest that, at least in the short to medium term, surgery is more effective than tablets for treatment of GORD," says lead researcher Samantha Wileman of the Health Services Research Unit at the University of Aberdeen in the UK. "But surgery does carry a risk and whether this is outweighed by the benefits in the long term is still not certain." "Previous research, prior to the development of keyhole surgery for GORD, has suggested that the benefits of surgery for GORD are not sustained over time, highlighting the importance for future keyhole fundoplication studies to include longer term follow-up," says Wileman. "We also need to know more about the clinical and cost implications of long term medication versus surgery." 
RSRT is on Facebook. Join us! 
RSRT is on Twitter. Follow us!
Rett Syndrome Research Trust |
