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Authorized & Official Media Reps:
Beth Nguyen RN, President/Executive Director Bethnguyen@wstfcure.org (678) 977-6119 Emily Claxton, Vice-Chairperson Emilyclaxton@wstfcure.org Lisa Johnson RN, JD - Director of Counsel The LAJ Law Firm, LLC. Lisa A. Johnson Attorney at Law Lajlaw@comcast.net (770) 841-5104 |
Past Media Clippings
Worldwide Syringomyelia & Chiari Task Force Selected for Global Study!
Worldwide Syringomyelia& Chiari Task Force has been chosen by the National Organization for Rare Disorders to participate for the first-ever Worldwide Natural History Study and Registry for the disease Syringomyelia and Chiari that can be accessed and used worldwide!
For Immediate Release:
April 19, 2016
NORD, the leading, independent nonprofit organization committed to helping people and families affected by rare diseases, today announced the 20 patient groups that will be given the opportunity to develop a natural history study, funded in part by the cooperative agreement, through NORD’s Natural History Study research platform. The Worldwide Syringomyelia & Chiari Task Force has been chosen by the NORD to participate for the study for the disease Syringomyelia and Chiari. http://rarediseases.org/nord-announces-20-rare-disease-patient-groups-selected-to-develop-natural-history-studies-as-part-of-fda-cooperative-agreement/
"We were chosen to be a part of a bigger natural history study project that involves a total of 20
organizations with NORD. This is a crucial “first” for patients with Syringomyelia and Chiari and we are honored to be a part of this to help save lives! The natural history study registry and the data collected will open doors of opportunity and hope for thousands of patients all over the
world! We would like to thank NORD and the FDA for providing this amazing opportunity to expand and offer hope and answer unmet needs for men, women, and children all over the world," said Beth Nguyen, R.N. and CEO of the Worldwide Syringomyelia & Chiari Task Force.
Syringomyelia is a disease that is identified when cysts also termed a syrinx form inside the spinal cord and expand. They are identified by a diagnostic test called an MRI. The presence and/or expansion of the cysts can cause spinal cord and spinal nerve damage that can lead to widespread symptomology, complications, and moderate to severe pain. Defined by the NIH " Chiari malformations are structural defects in the cerebellum, the part of the brain that controls balance. When the indented space at the lower rear of the skull is smaller than normal, the cerebellum and brain stem can be pushed downward. The pressure that is placed on the cerebellum can block the flow of cerebrospinal fluid (the liquid that surrounds and protects the brain and spinal cord)."
According to the official news release distributed today by NORD,“Our goal is for the 1 in 10 Americans with rare diseases, most of whom are children, to have a treatment and cure, and we developed NORD’s Natural History Study platform to eliminate challenges standing in the way of that target,” said NORD President and CEO Peter L. Saltonstall. “We thank the FDA for its support of NORD and ongoing commitment to rare diseases.”
Members of the media are invited to speak with Beth Nguyen, R.N. by utilizing the contact information below. Mrs. Nguyen started the Worldwide Syringomyelia & Chiari Task Force because of the struggles she encountered in her own journey. No longer able to deliver care at the bedside due to illness, Beth was determined to use her 15 years of nursing experience to advocate for men, women, and children suffering from a disease that is still not well recognized in the medical community.
Worldwide Syringomyelia& Chiari Task Force has been chosen by the National Organization for Rare Disorders to participate for the first-ever Worldwide Natural History Study and Registry for the disease Syringomyelia and Chiari that can be accessed and used worldwide!
For Immediate Release:
April 19, 2016
NORD, the leading, independent nonprofit organization committed to helping people and families affected by rare diseases, today announced the 20 patient groups that will be given the opportunity to develop a natural history study, funded in part by the cooperative agreement, through NORD’s Natural History Study research platform. The Worldwide Syringomyelia & Chiari Task Force has been chosen by the NORD to participate for the study for the disease Syringomyelia and Chiari. http://rarediseases.org/nord-announces-20-rare-disease-patient-groups-selected-to-develop-natural-history-studies-as-part-of-fda-cooperative-agreement/
"We were chosen to be a part of a bigger natural history study project that involves a total of 20
organizations with NORD. This is a crucial “first” for patients with Syringomyelia and Chiari and we are honored to be a part of this to help save lives! The natural history study registry and the data collected will open doors of opportunity and hope for thousands of patients all over the
world! We would like to thank NORD and the FDA for providing this amazing opportunity to expand and offer hope and answer unmet needs for men, women, and children all over the world," said Beth Nguyen, R.N. and CEO of the Worldwide Syringomyelia & Chiari Task Force.
Syringomyelia is a disease that is identified when cysts also termed a syrinx form inside the spinal cord and expand. They are identified by a diagnostic test called an MRI. The presence and/or expansion of the cysts can cause spinal cord and spinal nerve damage that can lead to widespread symptomology, complications, and moderate to severe pain. Defined by the NIH " Chiari malformations are structural defects in the cerebellum, the part of the brain that controls balance. When the indented space at the lower rear of the skull is smaller than normal, the cerebellum and brain stem can be pushed downward. The pressure that is placed on the cerebellum can block the flow of cerebrospinal fluid (the liquid that surrounds and protects the brain and spinal cord)."
According to the official news release distributed today by NORD,“Our goal is for the 1 in 10 Americans with rare diseases, most of whom are children, to have a treatment and cure, and we developed NORD’s Natural History Study platform to eliminate challenges standing in the way of that target,” said NORD President and CEO Peter L. Saltonstall. “We thank the FDA for its support of NORD and ongoing commitment to rare diseases.”
Members of the media are invited to speak with Beth Nguyen, R.N. by utilizing the contact information below. Mrs. Nguyen started the Worldwide Syringomyelia & Chiari Task Force because of the struggles she encountered in her own journey. No longer able to deliver care at the bedside due to illness, Beth was determined to use her 15 years of nursing experience to advocate for men, women, and children suffering from a disease that is still not well recognized in the medical community.