UPDATE: Successful Rett Syndrome inaugural gala to help fund clinical trial

Plan Ahead Events will be coordinating the event to ensure the quality and success of the gala.

by J. Werner
Jun 18, 2014

UPDATE: 

Turn out the lights, the gala's over, but what an event it was! The inaugural gala to benefit Rett Syndrome featured country superstar, Collin Raye, in an intimate setting that allowed attendees to see this legend of country music, up close and personal. 

U. S. Congressman Kevin Brady did the honors as the evening's emcee, and auctioneer, Ray Burgess, enertained the audience with his lively auctioneering skills, peppered with his quick wit and one-liners. The extensive silent auction ensured that no one went home empty-handed.

Highlights of the evening included"

Dr. Jeffrey Neul, Associate Professor of the Department of Pediatrics, Section of Neurology at Baylor College of Medicine, and Petrello Scholar at the Duncan Neurological Research Institute at Texas Children's Hospital in Houston, Texas. Dr. Neul is also the Medical Co-Director of the Blue Bird Circle Rett Center.

A video about Rett Syndrome provided by PSC Video Service, so that those in attendance could gain a better understanding of this dreaded affliction.

And a bevy of autographed items too many to mention, but which included autographed guitars by Clint Black and Merle Haggard,  trips, and sports ticket packages. Father Tom Rafferty, pastor of St. Anthony of Padua Catholich Church, was the lucky winner of the 'heads or tails' game, winning two tickets provided by United Airlines.  

The clinical trial will take place in Houston at Texas Children's Hospital. It's hopeful that it will improve the quality of life for daughters suffering from Rett Syndrome, and provide the findings neccessary to bring the cure to fruition. For those who were unable to attend, but who wish to contribute to the clinical trial to improve the quality of daughters afflicted with Rett Syndrome, click on the link provided. Any amount will be greatly appreciated by the International Rett Syndrome Foundation.

 

ORIGINAL STORY:

THE WOODLANDS, Texas -- Picture this, a gala to benefit one of the rarest syndromes known to medical science: Rett syndrome. The inaugural ‘Picture a Cure’ Gala will fund a promising clinical research trial here in the Greater Houston area. The gala will be held at The Woodlands Waterway Marriott, Saturday, July 12, from 6:30 - 11 p.m.

Those in attendance will be entertained by country superstar, Collin Raye, and will also enjoy a seated dinner, a silent auction, a live auction orchestrated by Live Auctioneer, Ray Burgess, and special guest appearances. U.S. Congressman Kevin Brady will honor the occasion by emceeing the event.

This fundraiser is no promissory note devoid of accountability. The International RETT Syndrome Foundation has grasped the big picture with a thorough understanding of the root cause of this malady that affects female offspring. Animal studies have demonstrated the possibility of reversing the disorder, and human clinical trials are taking place right now. The proceeds of the ‘Picture a Cure’ Gala will go towards funding the next phase of this new FDA-approved clinical research trial that will take place at Texas Children’s Hospital at the Jan and Dan Duncan Neurological Research Institute, as well as fund other clinical trials, and drug therapy research.

The evolution of the research and its findings prompted Kenna Seiler to spearhead the fundraising gala. Seiler’s own daughter was diagnosed with Rett syndrome eight years ago. Seiler was instrumental in establishing the Rett Syndrome Strollathon fundraiser in Montgomery County starting in 2009.

“The research is progressing at lightning speed and we need the funds to match the science,” said Seiler. “While The Woodlands and Montgomery County have been incredibly generous in our efforts to fund the research that finds a cure for Rett syndrome through our Strollathons and golf tournaments, we must accelerate our fundraising to get to that final step. We have seen the science go from basic research, where the researchers are just trying to figure out what is going on, to being well into clinical trials. That isn’t happening in a lot of disorders. Eight years ago, I think they were twenty-percent there. I think they are now at eighty percent. We have the research. We have the science. It is now just about accelerating the cure,” added Seiler.

Rett syndrome is a neurodevelopmental disorder that affects girls almost exclusively. It is characterized by a slowing of development within the first six to 18 months. Its debilitating properties include the inability to effectively use hands, the inability to speak, difficulty in eating, swallowing and digesting food, and seizures which are experienced by 80% of those affected. In at least 50% of the cases, the individuals cannot walk. To date, there are approximately 4,000 cases of Rett syndrome that have been diagnosed in the United States, but the disorder is genetically linked to more widespread neurological disorders such as autism. The research isn’t just benefiting a small percentage of the population; it’s being leveraged for other neurological disorders.

Rett syndrome is caused by mutations in a gene located on the female X chromosome (the MECP2 gene). In at least 95% of Rett syndrome cases, the cause is a de novo mutation in the child; it is not inherited from either parent. It’s uncertain why the mutation occurs, but any female offspring could be affected. To bring this to the attention of the masses, the International Rett Syndrome Foundation was created 30 years ago to raise public awareness, and to form a support group for families with a Rett syndrome child. Its core mission today is to fund research for treatments that will improve the overall quality of life for those living with this debilitating disorder, and to expedite the cure. Seiler is sure that the cure is forthcoming.

"I know that we will find a cure during my lifetime; I am on a mission to make sure that it happens during Rachael’s lifetime."

Kenna and Michael Seiler’s daughter, Rachael, is now ten years old. She cannot walk or talk. She has no use of her arms and hands, and she now has seizures. Rachael can no longer sit around and wait for a cure. The next phase of the clinical trial is essential for Rachael and Rett syndrome daughters for a better quality of life. Heed Kenna Seiler’s plea to ‘save our daughters,’ by being a part of the evolution of the cure for Rett Syndrome. 

Plan Ahead Events, a full-service meeting and event management company, will be coordinating the fundraiser to ensure the quality and success of the gala. Plan Ahead Events oversees the hugely successful Artist Expo held annually in The Woodlands, the Energy Expo, and orchestrated last year’s inaugural women’s WISE Conference, and will do so again this year.

“We not only want to ensure the success of this inaugural gala, but bring this devastating disorder to the forefront in the community,” said Glenda Minshew of Plan Ahead Events. “It’s heartbreaking to see what these families go through. I just feel like we have to help them with this effort to find a cure.”

For more information about the gala, sponsorships, auction donations, and tickets, visit the Rett syndrome website for the event, Rett Syndrome ‘Picture a Cure’ Gala. To learn more about Rett syndrome and the IRSF, and how you can help, visit the link provided.


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