- Posted Monday October 14, 2013
Phoenix-based clinic seeks diagnoses for children and families in search of answers
PHOENIX, Ariz. - Oct. 14, 2013 - The
Translational Genomics Research Institute (TGen)
this week celebrates the opening of a new clinic to treat children
with rare disorders that TGen's advanced technology could help
The TGen Center for Rare Childhood Disorders (the Center) will harness the latest technology for genome sequencing to pinpoint the causes of rare childhood disorders that largely remain a mystery to modern medicine.
The Center holds a ribbon cutting for the grand opening of its new clinic at 10:30 a.m. Tuesday, Oct. 15, at 3330 N. 2nd Street, Suite 402.
Among the confirmed guests are: keynote speaker Dr. Richard Carmona, 17th Surgeon General of the United States; Karie Dozer, KTAR radio host and mother of a child with a rare disorder; Scott Smith, Chief of Staff to Arizona Gov. Jan Brewer; Arizona House Speaker Rep. Andy Tobin; and Phoenix Mayor Greg Stanton.
"The opening of this clinic is a remarkable milestone in the evolution of TGen, and one that makes a significant difference in the lives of countless children and families, not only in Arizona, but across the nation," said Dr. Jeffrey Trent, TGen President and Research Director.
One of the foremost examples of how genomic technology can dramatically improve the quality of life for children with rare disorders is 13-year-old Shelby Valint, a Phoenix girl who was confined to a wheelchair for most of her life. After years of inconclusive medical tests, TGen's advanced DNA analysis revealed her body's inability to produce dopamine, a natural brain chemical needed for muscle control and balance. With proper medication, Shelby is now able to walk, talk, even run and dance.
"Shelby's case is just the tip of the iceberg. We hope to be able to assist many more children with rare, often undiagnosed, disorders," said Dr. Vinodh Narayanan, Medical Director of the Center and manager of the new rare disorders clinic.
TGen already collaborates with local hospitals in clinical trails devoted to cancer. This new clinic will enable TGen to use its genomic technology to focus on helping children with multiple and varied undiagnosed conditions.
Quotes from those attending tomorrow's celebration of TGen's new clinic:
• "As parents, we are too often left with nowhere to turn. Our children are often simply prescribed medications, such as anti-seizure drugs, that only address the symptoms," said Dozer, who also is Chair of the Center's Parent Advisory Committee (PAC). "Many of these children have a collection of symptoms with no name for their conditions."
• "At TGen, we now have the tools to sequence the entire genome of these children, in a relatively short time and at ever-lower costs. Through this examination of the billions of chemical letters that spell out each human being's unique genome, and analyzing all the potential genetic changes, or mutations, we now have the ability to potentially identify the root cause of each child's condition," said Dr. David Craig, TGen's Deputy Director of Bioinformatics and Co-Director of the Center.
• "We want to use genetic information to understand more about particular disorders, and develop novel approaches to treatment," said Dr. Matt Huentelman, Associate Professor in TGen's Neurogenomics Division and Co-Director of the Center. "That is what is going to differentiate us from other services - complete integration of the clinical center and the genomic research lab."
• Phoenix Mayor Stanton: "This new clinic will give children who are struggling with rare and devastating illnesses an opportunity they may not otherwise have to get better," said Mayor Greg Stanton. "Life-changing science is taking place right in our downtown, reminding us every day of why bioscience investment is so important for our community."
• "Modern scientific advances are uncovering the nature and causes of disease like no other point in history," said Dr. Carmona. "I am honored to be invited to help guide TGen's development of this unique Center - focused on children - that uses the latest DNA technology to understand and diagnose rare disorders at the molecular level and to develop treatments for patients who previously had few, if any, options for care."
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Translational Genomics Research Institute (TGen) is a Phoenix, Arizona-based non-profit organization dedicated to conducting groundbreaking research with life changing results. TGen is focused on helping patients with cancer, neurological disorders and diabetes, through cutting edge translational research (the process of rapidly moving research towards patient benefit). TGen physicians and scientists work to unravel the genetic components of both common and rare complex diseases in adults and children. Working with collaborators in the scientific and medical communities literally worldwide, TGen makes a substantial contribution to help our patients through efficiency and effectiveness of the translational process. For more information, visit:www.tgen.org.
TGen Senior Science Writer