| Join the Search Press Release |
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Parents, Physicians and the American Public Urged to
“Join the Search” for Children with Overlooked Genetic Diseases
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Emerging research and available treatments fuel need for prompt diagnosis
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New York, NY, February 24, 2006 – In an effort to increase awareness and diagnosis of a group of seven genetic diseases whose symptoms may be subtle and often unrecognized, the National MPS Society today announced Join the Search for Patients with MPS, a nationwide pursuit to identify children with Mucopolysaccharidoses (mew-ko-poly-sak-a-ride-dos-es). Commonly referred to as MPS, these diseases are caused by enzyme deficiencies that prevent the body from breaking down and recycling materials in cells which can result in stunted growth, stiff joints, speech and hearing impairment, breathing problems, mental retardation and a dramatically shortened life span.
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Join the Search for MPS Patients kicks off today in conjunction with National MPS Awareness Day. To commemorate this nationwide call for attention and diagnosis, patients, families and genetic experts from across the country will convene in New York City to unveil a unique photo exhibit featuring individuals with MPS and preside over the closing bell ceremony at the NASDAQ Stock Market. |
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| “Early diagnosis and intervention are critical for improved outcomes, yet there often is significant delay in proper care because initial symptoms, such as recurrent ear infections, delayed growth or respiratory problems may be simply disregarded as common childhood medical problems,” said Dr. Gregory M. Pastores, Director, Neurogenetics Unit at New York University School of Medicine. “With emerging research underway and treatments currently available for some forms of MPS, early diagnosis can help minimize potentially life-threatening complications and improve patients’ quality of life.” |
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| To expedite the search, the National MPS Society has created a patient photo exhibit and website to put a face on all seven forms of the disease, and to celebrate the individuality of those affected by MPS and related diseases. The photo exhibit will travel across the country to various public venues, starting with NYU. |
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| “MPS is not defined by the number of people it affects, but by each individual who triumphs over its many challenges,” said Barbara Wedehase, MSW, CGC, Executive Director, National MPS Society. “We hope our photo exhibit serves as a visual and personal reminder of the varying degrees of clinical presentation and severity that make MPS unique and, in some cases, challenging to recognize.” |
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| Because each individual’s disease progresses at varying rates, it may take years and numerous visits to a broad range of specialists before MPS is recognized and an appropriate diagnosis by a geneticist is made. |
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| As such, the Society is asking physicians involved in caring for children during their path to diagnosis to take a pledge to search for these patients and encourage their colleagues to do so as well. A physician’s pledge to join the search can include learning more about MPS by requesting or downloading educational materials, committing to promptly refer suspected MPS patients to a geneticist or metabolic specialist or educating colleagues about signs and symptoms in an effort to encourage greater awareness that will hopefully lead to earlier diagnosis. Physicians, parents and the public can get more information and join the search for patients with MPS by logging on to www.jointhesearch.org. |
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| Last week the U.S. Senate passed a unanimous resolution designating February 25th as “National MPS Awareness Day” in an effort to raise public awareness and encourage increased public and private sector research for early diagnosis and treatments of MPS disorders. The US House of Representatives is also considering a Resolution for National MPS Day. |
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| “I have met with MPS children and their families and am touched by the extraordinary hope and heart they exhibit despite the trials of this difficult disorder,” stated Congressman Ron Kind (D-WI) who introduced H. Res. 85, supporting the goals and ideals of National MPS Day. “I am proud to join MPS patients, their families and advocates, and all members of the National MPS Society in recognizing the severity of this disorder and in honoring those dedicated to raising awareness and finding a cure.” |
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About the National MPS Society
The National MPS Society is a non-profit organization whose mission is to find cures for MPS and related diseases, and to provide hope and support for affected individuals and their families through research, advocacy and awareness of these devastating diseases. Mucopolysaccharidoses (MPS) are genetic diseases that cause cells to perform improperly, resulting in progressive damage throughout the body. The diseases are rarely apparent at birth, but the signs and symptoms develop with age as more cells become damaged. As the damaged cells accumulate in the body, the body shuts down, eventually leading to a premature death. At this time there is no cure. Additional information is available online at http://www.mpssociety.org.
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| The Join the Search campaign is made possible by support from BioMarin Pharmaceutical Inc, Genzyme Corporation and Shire Human Genetic Therapies.
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Contacts:
Barbara Wedehase, National MPS Society
207-947-1445
Barbara@mpssociety.org
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Emily Faucette, WeissComm Partners
415-595-9407
Emily@weisscommpartners.com
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