NYC Picture a Cure Benefit Raises Over $425,000 for Rett Syndrome Research

The annual New York City Picture a Cure Benefit was held at Sotheby’s on June 16th. The event was another huge success raising over $425,000 for Rett Syndrome research. The 400+ guests in attendance enjoyed a memorable evening that included live entertainment, wonderful food, silent and live auctions and a program highlighted by Dr. Huda Zoghbi of Baylor College of Medicine. Dr. Zoghbi’s spirited remarks focused on the most recent developments in Rett research and the role that RSRF has played in moving the research forward.

RSRF would like to thank Event Chairs, Steve and Maura Gallucci, as well as the wonderful and generous supporters who served as Event Co-Chairs and Benefit Committee members. The dedication and willingness of this group to give of their time and effort is greatly appreciated. RSRF would also like to thank Sotheby’s for hosting the event. As always, they did a fantastic job and should be commended for their continued support of the NYC Benefit. Lastly, we would like to thank Dr. Huda Zoghbi for taking time out of her extremely busy schedule to join us. As always, her words left us hopeful, inspired and motivated.

More information on this event will be available in the next edition of the RSRFlash, due out at the end of August. If you would like to view photos of the event, click here.

ACCA Golf Tournament Supports Local Family and Rett Research

The Carmel Mountain Ranch Country Club in San Diego played host to the second annual American Commercial Claims Administrators (ACCA) Charity Golf Classic. John Anderson, an employee of ACCA, and his wife Kami, have two beautiful daughters, Emily and Taylor, that are affected by Rett Syndrome.

On July 8th, ACCA employees, along with their associates and number of their business vendors, took to the course to show their support for the Anderson's and Rett Syndrome research. The results were astounding! Over $43,000 was raised, an almost 50% increase over the inaugural event. Congratulations to everyone who made this event another enormous success. Our sincere thanks go out to ACCA, Frasco Investigative Services (who co-hosted the event), the Community Relations Committee, the participating vendors, the Anderson family and the number of other local families who are affected by Rett Syndrome. To see photos of the event, please click here.

Inaugural Cape Cod, MA Strollathon a Huge Success

RSRF's signature fundraising event, the Strollathon, debuted in Cape Cod, MA on June 4th. To say the least, this inaugural event was an overwhelming success. Spearheaded by Event Chairs, Justin and Jennifer Endres and their daughter Jillian, who was diagnosed with Rett Syndrome last year, the event raised over $130,000 for Rett Syndrome research. In addition to raising critical research dollars, the event raised an enormous amount of awareness in the Cape section of Massachusetts. Over 500 people attended the event and made the 3-mile trek.

RSRF would like to thank the Endres' and all of their family and friends. Special thanks also go out to the twenty local companies who sponsored the event and the 50+ teams that participated. Congratulations to all on a fantastic event. To view photos of the event, click here.

Teeing It Up For a Cure in Michigan

Over 80 golfers in the Grand Rapids, MI area got together on June 10th to raise much needed research dollars and awareness for Rett Syndrome. The First Annual West Michigan Rett Syndrome Charity Golf Tournament, held at North Kent Golf Course in Rockford, MI, was a great success raising nearly $17,000 for research.

RSRF would like to thank Tournament Director, Scott Novitsky, for all of his hard work and effort. Scott and his wife, Kristin, have a two-year old daughter (Maiya) who is affected by Rett Syndrome. We would also like to thank the Klein family for all of their support of the event. To view photos of the event, click here.

Summary of 6th Annual Rett Syndrome Symposium Available Online

On June 27-29, 2005, RSRF hosted the 6th Annual Rett Syndrome Symposium, the premiere scientific meeting devoted to this disorder. Scientists from around the world gathered to exchange the latest information and discuss future research directions. To read a summary of the presentations please click here.

Summary of Dr. Jeffrey Neul’s Research Update Now Available

On Sunday, June 26th, RSRF hosted a Research Update at the Eaglewood Resort and Spa located outside of Chicago. Featured speaker was Dr. Jeffrey Neul, a physician-scientist at the Baylor College of Medicine who is in the unique position of conducting both clinical and basic science research. Dr. Neul sees patients at The Blue Bird Rett Center where he is involved in patient care and clinical trials. He also conducts basic research in the laboratory of one of the world’s leading scientists, Dr. Huda Zoghbi. To read a summary of his presentation please click here.

Survey on ketogenic diet and VNS

RSRF is conducting surveys to gather information on the efficacy of the ketogenic diet and Vagal Nerve Stimualtion (VNS) for children and adults with Rett Syndrome who suffer from intractable seizures. If your child has tried the ketogenic diet please participate in our survey by clicking here. If your child has a VNS please click here. Data compiled from this survey will be shared with you via the RSRFNewsAlert, website and quarterly newsletter. The data will also be made available to the research community. We thank you in advance for your help.

Prompt Seizure Therapy May Have No Long-term Benefit

NEW YORK (Reuters Health) - After a seizure, early intervention with anticonvulsant drugs appears to have little effect on the long-term prognosis of epilepsy, British researchers report in the June 11th issue of The Lancet. "When to begin treatment with antiepileptic drugs in patients with few or infrequent seizures is a difficult decision," study co-author Dr. David Chadwick, from the University of Liverpool, and his associates note. Doctors and patients must weigh the risk of seizure recurrence against the risk of medication side effects. To continue reading please click here.

FDA Approves New Indication for Topomax (topiramate) as Initial Monotherapy for Adults and Children with Epilepsy

The FDA yesterday approved a new use for Topomax as initial monotherapy in patients under 10 years of age and older with partial-onset or primary generalized tonic-clonic seizures. To read please click here.

Study Reveals Better Drug Option for Emergency Treatment Of Seizures in Children

Administering a drug called midazolam via the mouth cavity is more effective then rectal diazepam for the emergency treatment of seizures in children, concludes a study published in this week’s issue of The Lancet. To continue reading please click here.

FDA Approves UCB's Keppra(R) for Use in Childhood Epilepsy

UCB Pharma, Inc. announced today that the U.S. Food and Drug Administration (FDA) has approved the company's anti-epilepsy drug Keppra® (levetiracetam) as add-on therapy in the treatment of partial-onset seizures in children four years of age and older with epilepsy. The FDA approved this new pediatric indication for Keppra® under a six-month priority review. To read more please click here.