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National PKU Alliance (NPKUA)
PKU Community Creates the First and Only National PKU Alliance
The National PKU Alliance is the only non-profit organization dedicated to unifying PKU community through research, education, support and advocacy.
FAIRFAX, VA – June 24, 2008 – The PKU community has joined together to form the first and only National PKU Alliance (NPKUA), a national non-profit organization created to support individuals, families and loved ones affected by Phenylketonuria, or PKU, a lifelong genetic disorder. The first Board of Directors Meeting on Sunday, June 22, 2008, marked the organization’s official launch. Members of the Board, representing nine regional PKU organizations, met to create an internal infrastructure to ensure the organization is aligned to achieve its mission and purposes.
As part of the Board Meeting, several NPKUA officers were elected including Dick Michaux as President, Judy Griffith as Vice-President, Rob Kerr as Treasurer, and Kelly McDonald as Secretary.
“The creation of the National PKU Alliance represents a significant, necessary and important milestone for the PKU community, which until now, has not had any national advocate representation,” said Dick Michaux, President of the NPKUA and Founder of the Michaux Family Foundation, a non-profit PKU organization.
“This Alliance unites the many local activists to create an ‘organization of organizations’ – a national advocacy group made up of local PKU groups and other community members committed to raising PKU awareness on a national level while supporting each other’s local efforts,” said Judy Griffith, Vice-President of the NPKUA and a Founder of the Mid-Atlantic Connection for PKU and Allied Disorders (MACPAD), a non-profit PKU and related metabolic disorders organization.
The NPKUA was created to bring together the grass roots efforts of the 16 active local PKU organizations, 100 metabolic clinics, national and worldwide research institutions, low-Phe food and formula manufacturers and pharmaceutical companies as one national voice dedicated to raising PKU awareness and driving advocacy and education, while ultimately seeking a cure for PKU. For the first time the PKU community will be able to direct research fundraising to research proposals which have been peer reviewed by an independent panel of scientists, doctors and clinicians. The NPKUA will sponsor national conferences to bring PKU families and community leaders together to exchange best practices and to learn the current state of research proposals.
The initial members of the NPKUA who participated in the Board Meeting include The Michaux Family Foundation for PKU, the Mid-Atlantic Connection for PKU and Allied Disorders, Maryland Alliance of PKU Families, Children’s PKU Network, Indiana PKU and Allied Disorders Association, North Texas PKU Association, New England Connection for PKU and Allied Disorders, Ryan’s PKU Foundation and the Minnesota PKU Foundation.
PKU, or phenylketonuria (pronounced fen-il-Key-to-New-ree-uh) is a lifelong genetic disorder where a deficient enzyme prevents the body from metabolizing an essential amino acid, called Phenylalanine, or Phe, which is found in most foods, including meat, bread, eggs, dairy, nuts and some fruit and vegetables. When left untreated, PKU patients who consume too much Phe are at risk for severe neurological complications, including IQ loss, memory loss, concentration problems, mood disorders, and in some cases, severe mental retardation. PKU affects approximately 13,000 people in the U.S. and 50,000 people world-wide.
To manage their disorder, PKU patients must reduce their blood Phe levels in order to avoid associated neurological complications. Blood Phe levels can be reduced through a Phe-restricted diet, which requires patients to monitor their daily intake to a prescribed amount of Phe. A Phe-restricted diet is supplemented with medical foods and specially produced low-protein foods.
About the National PKU Alliance
The NPKUA is an alliance of the many local, state, and regional organizations that support PKU families. The National PKU Alliance is dedicated to improving the lives of individuals and families associated with PKU, through research, education, support and advocacy, while ultimately seeking a cure. Visit www.npkua.org to learn more.
Contacts for NPKUA:
Dick Michaux, President: (970) 471-1417
WeissComm Partners (for media requests)
Tricia Larson: (206) 789-8986