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ISSUE |
YR |
VOL |
NO |
TITLE |
| W | 1989 | 1 | 2 | Behavior of Children with PKU: Is it Different? |
| SS | 1989 | 1 | 1 | PKU and Other Metabolic Diseases in the
U.S.
- Part 1: The PKU Population |
| SS | 1989 | 1 | 1 | PKU and DNA - Part 1: A Foundation of Knowledge About PKU |
| SS | 1989 | 1 | 1 | Effect of Diet Control on Intelligence in
PKU: Results of Two Long Term Studies
- Table: IQ of Kids 6-12 Related To Loss of Diet Control |
| SS | 1989 | 1 | 1 | PKU in Poland |
| SS | 1989 | 1 | 1 | Hyperphenylalaninemia and Reproduction: What is the Outlook for Young Men and Young Women? |
| F | 1989 | 1 | 2 | Diet Policies of U.S. PKU Treatment Programs: An Historical Perspective |
| F | 1989 | 1 | 2 | PKU and DNA
- Part 2: Diagnostic Uses |
| F | 1989 | 1 | 2 | PKU in Brazil |
| W | 1990 | 1 | 3 | PKU in the Kingdom of Saudi Arabia |
| W | 1990 | 1 | 3 | Gene Therapy for PKU: Is it on the Horizon? |
| W | 1990 | 1 | 3 | PKU and Other Metabolic Diseases in the
U.S.
- Part 3: Newborn Screening and Funding of Special Formulas |
| W | 1990 | 1 | 3 | Mendelian Hyperphenylalaninemia |
| W | 1990 | 1 | 3 | The Hyperphenylalaninemias: the Metabolic Basis of Inherited Disease |
| W | 1990 | 1 | 3 | Maternal Phenylketonuria: Transplacental Effects on Fetal Health |
| W | 1990 | 1 | 3 | Topics in Clinical Nutrition |
| SS | 1990 | 2 | 1 | Can Women with PKU have Normal Babies? The Maternal PKU Collaborative Study |
| SS | 1990 | 2 | 1 | Are "Organoids" in our Future? |
| SS | 1990 | 2 | 1 | Neurological Deterioration in Adult Phenylketonuria |
| F | 1990 | 2 | 2 | Intelligence and Quality of Dietary Treatment of Phenylketonuria |
| F | 1990 | 2 | 2 | "Enzyme Reactor": Another Possible
Treatment for PKU?
- The realities of research for PKU treatment - Parents can influence PKU research |
| F | 1990 | 2 | 2 | "PKU Mouse" Brings Hope for Progress in Understanding and Treating PKU |
| F | 1990 | 2 | 2 | Maternal PKU Collaborative Study centers / contact persons: corrections |
| F | 1990 | 2 | 2 | National Survey of Treatment Programs for PKU: corrections |
| W | 1991 | 2 | 3 | Progress Toward Gene Therapy for PKU |
| W | 1991 | 2 | 3 | Orphan Drug Act Reauthorization Vetoed |
| W | 1991 | 2 | 3 | How Much Does the PKU Diet Cost? More
Results of the Survey
- Reported Yearly Costs for PKU Medical Foods - Who Pays for Medical Foods? - Reported Yearly Costs of Low Protein Products - Perceived Cost Burden of the PKU Diet - Insurance Coverage for PKU-Related Expenses |
| SS | 1991 | 3 | 1 | A Different Approach to Gene Therapy: Direct Gene Transfer Into Body Cells, Indirect Viral Gene Therapy |
| SS | 1991 | 3 | 1 | Maternal PKU Study: A Preliminary Report of Abnormalities |
| SS | 1991 | 3 | 1 | Diurnal variations of Serum Phenylalanine in Phenylketonuric Children on Low Protein Diets |
| F | 1991 | 3 | 2 | Educational Achievement of PKU Teens and Young Adults In Maryland |
| F | 1991 | 3 | 2 | Oregon Study Looks at a New Taste for PKU Medical Foods |
| F | 1991 | 3 | 2 | Maternal PKU Collaborative Study Highlights
- Findings Related to Pregnancies of Women with PKU - One Woman's Experience with MPKU - Studies with the PKU Mouse - Gene Therapy for PKU |
| W | 1992 | 3 | 3 | Highlights of the 5th Meeting of the
European Society for PKU
- Phenylalanine Levels and I.Q - German Collaborative Study - "Adult PKU" Workshop |
| W | 1992 | 3 | 3 | A New Look at Growth: Results of the U.S. Collaborative Study of Children Treated with PKU |
| W | 1992 | 3 | 3 | Children of Fathers with Phenylketonuria: An International Survey |
| SS | 1992 | 4 | 1 | Clues to the Cause of Mental Retardation in
Untreated PKU: Implications for Treatment
- Description of the process that leads to mental retardation |
| SS | 1992 | 4 | 1 | Detection on Phenylalanine in the Human Brain by Nuclear Magnetic Resonance Spectroscopy |
| SS | 1992 | 4 | 1 | The Discovery of PKU |
| F | 1992 | 4 | 2 | Newborn Screening for PKU: A Personal
History
- A discussion of how the Guthrie Test came about |
| F | 1992 | 4 | 2 | A Tribute to Dr. Robert Warner |
| F | 1992 | 4 | 2 | Neuropsychology of Early-Treated Phenylketonuria: Specific Executive Function Deficits |
| W | 1993 | 4 | 3 | Magnetic Resonance Imaging in PKU: Changes in Brain White Matter |
| W | 1993 | 4 | 3 | PAH Genotype Research in Progress |
| W | 1993 | 4 | 3 | 14th PKU Parents' Conference Draws Families from Nine States |
| SS | 1993 | 5 | 1 | A Time for PKU Treatment Guidelines and
Standards
- A first step toward developing U.S. PKU treatment guidelines |
| SS | 1993 | 5 | 1 | New British Recommendations for the Management of PKU |
| SS | 1993 | 5 | 1 | Phenylketonuria due to Phenylalanine Hydroxylase Deficiency: An Unfolding Story |
| SS | 1993 | 5 | 1 | Agoraphobia in Phenylketonuria |
| F | 1993 | 5 | 2 | Parents Help Push New York Insurance Bill Into Law |
| F | 1993 | 5 | 2 | First New England PKU Parent's Conference
Draws Families from Sixteen States
- The Evolution of PKU - The Importance of Diet for Life - Effect of PKU on Non-PKU Siblings - Panel Discussion - Maternal PKU - Gene Therapy - Expanded View of PKU Care - Professional Panel |
| W | 1994 | 5 | 3 | American Academy of Pediatrics Begins Task of Evaluating PKU Treatment |
| W | 1994 | 5 | 3 | Highlights of the 7th Meeting of the European Society for PKU |
| W | 1994 | 5 | 3 | Psychological and Social Findings in Adolescents with PKU |
| W | 1994 | 5 | 3 | Malnutrition with Early Treatment of Phenylketonuria |
| SS | 1994 | 6 | 1 | Cognitive Deficits Found in Children with Mildly Elevated Phe Levels |
| SS | 1994 | 6 | 1 | New Massachusetts Law Sets National Precedent for Insurance Coverage of PKU Formula and Low Protein Foods; Strategies that led to success |
| F | 1994 | 6 | 2 | Letter Writing Campaign for Health Care Reform: Working Together Makes a Difference |
| F | 1994 | 6 | 2 | Progress on Assessment of U.S. PKU Treatment |
| F | 1994 | 6 | 2 | International Conference Celebrates
Sixtieth Anniversary of PKU Discovery
- An Historical View of PKU - PKU Gene Mutations - Effects of High Phe Levels - Improving Diet Control - Maternal PKU - Gene Therapy for PKU |
| W | 1995 | 6 | 3 | Parents Gather for PKU Meetings in Illinois
and California
- Illinois - California - 16th Annual PKU Parents' Conference - A discussion with Miriam Keller, age 27 - Cognitive Deficits in Children with Mildly Elevated Phe Levels |
| W | 1995 | 6 | 3 | Connecticut Follows in Massachusetts' Footsteps: New Law Mandates Coverage of Low Protein Foods |
| W | 1995 | 6 | 3 | Early-Treated Phenylketonuria: Adult Neuropsychological Outcome |
| SS | 1995 | 7 | 1 | Low Vitamin B12 Levels Found in Some Off-Diet Adolescents and Young Adults with PKU |
| SS | 1995 | 7 | 1 | The Discovery of PKU by Dr. Asjborn
Folling: Norway, 1934 (story by his son)
- The Discovery - Further Elucidation - Perspectives - Honors - Knowledge Leads to Humility |
| F | 1995 | 7 | 2 | New England PKU Conference Draws People
from Fifteen States and Canada
- PKU Mutations and the Progress of Gene Therapy - Formula Differences - Achieving "Ideal" Phe Control - Effects of High Phe Levels - Young Adults Speak Out |
| F | 1995 | 7 | 2 | Robert Guthrie PKU Scholarship Fund |
| F | 1995 | 7 | 2 | We Mourn the Death of Dr. Robert Guthrie |
| W | 1996 | 7 | 3 | Progress Being Made Toward Development of U.S. PKU Treatment Guidelines |
| W | 1996 | 7 | 3 | Three More States Pass PKU-Favorable
Legislation
- Maryland - New Hampshire - Florida |
| SS | 1996 | 8 | 1 | PKU: The Challenge Ahead - A Symposium to
Honor Dr. Richard Koch
- Diet Policies of PKU Clinics - Diet in Teenage Years - Tyrosine Supplementation - Gene Therapy for PKU - Maternal PKU Collaborative Study |
| SS | 1996 | 8 | 1 | Drinking the Formula Once, Twice or Three Times a Day: Does it Make a Difference? |
| SS | 1996 | 8 | 1 | Young People in the News
- Justin Amen - National Merit Scholarship Honors - "Brother, Sister Try to Qualify for Regionals" - Ice Dancing |
| SS | 1996 | 8 | 1 | Maternal Mild Hyperphenylalaninemia: An International Survey of Offspring Outcome |
| F | 1996 | 8 | 2 | Can PKU Treatment Be Improved?
- Nutritional Concerns - Nutrient Data - Off-Diet Effects & Restarting the Diet - Adult Health Care Model - Teen Non-Compliance - PKU Treatment Guidelines - A New Approach to the Diet - PKU Legislation |
| F | 1996 | 8 | 2 | Dr. Harvey Levy Receives First Guthrie Award |
| F | 1996 | 8 | 2 | Congenital Cardiac Malformations in Offspring of Mothers with Phenylketonuria and Hyperphenylalaninemia, Understanding Phenylketonuria |
| W | 1997 | 8 | 3 | Off-Diet Young Adults with PKU: Lives in
Danger
- The Study Group - Reaching Off-Diet Persons |
| SS | 1997 | 9 | 1 | Winter Issue Stirs Emotion and Action: Re
Off Diet Young Adults with PKU: Lives in Danger
- Responses from Young Adults - Responses from Families |
| F | 1997 | 9 | 2 | New England Meeting Focuses on Important PKU
Issues
|
| F | 1997 | 9 | 2 | Internet Connects PKU Community |
| F | 1997 | 9 | 2 | The Scott C. Foster Metabolic Research Fund |
| F | 1997 | 9 | 2 | PKU Treatment in Ireland |
| W | 1998 | 9 | 3 | Legislative Victories in Ten States! North Dakota, Nebraska, Connecticut, Kansas, New York, Oregon, Pennsylvania, Maine, Tennessee all passed PKU-favorable legislation since 1996. Table given. |
| W | 1998 | 9 | 3 | Honors for Special People: Second Guthrie Award for Advances in Biomedical and Molecular Genetics (Dr. Hugo Moser) and March of Dimes Goodwill Ambassador for WalkAmerica (Erika Krow, age 5) |
| SS | 1998 | 10 | 1 | First Robert Guthrie Awards Honor Seven
Outstanding Young People - John Engstrom receives first Guthrie Scholarship; 6 other merit award winners |
| SS | 1998 | 10 | 1 | More Legislative Victories: Nevada, New Jersey, Utah |
| SS | 1998 | 10 | 1 | European Society for PKU Meeting
Highlights:
- Guidelines for PKU Management - Adults Living with PKU - Home Monitoring for PKU-Possibly on the Horizon - Maternal PKU |
| W | 1999 | 10 | 2 | A New Approach to PKU Diet Treatment |
| W | 1999 | 10 | 2 | Gamma Zein: A New High Protein Phe-Free Diet Supplement Under Development |
| W | 1999 | 10 | 2 | Alpha-Lac: Another Diet Supplement on the Horizon |
| W | 1999 | 10 | 2 | 24-Hour Fluctuations in Blood Phe Levels |
| SS | 1999 | 11 | 1 | Celebrating a Decade of National PKU News. Reflections by the editor, Virginia Schuett, on the first ten years of National PKU News |
| SS | 1999 | 11 | 1 | Who's Who at National PKU News. Brief descriptions of the major people who were involved in National PKU News during the first ten years (Dr. Richard Kronmal; Dr, Robert Guthrie, Board member, now deceased; parent Donna Jahn, Board member; Cristine Trahms, Board member and newsletter contributor; parent Trish Mullaley; parents Marsha and B.J. Magol; Dr. Eleanor Brown, Research Review writer, now deceased; Susan Aldworth, graphic artist.) |
| SS | 1999 | 11 | 1 | What National PKU News Has Meant To Us: Subscribers Reflect. Brief quotes from many subscribers about the value of the newsletter to them over the past ten years |
| F | 1999 | 11 | 2 | Gene Repair for Inborn Errors of Metabolism: What is it and when might it become available? By Dr. R. Michael Blaese, M.D., Head of Kimeragen Molecular Pharmaceuticals |
| F | 1999 | 11 | 2 | Update on Phenylase Research, By Paul Baehr, CEO IBEX Technologies |
| F | 1999 | 11 | 2 | Recent Legislative Victories: - Revoking the "Sunset Clause" in North Dakota - Saving the Washington PKU Clinic - Novel Legislation in Arkansas Provides Food & Formula |
| F | 1999 | 11 | 2 | Tribute to Eleanor Brown, former writer for National PKU News |
| W | 2000 | 11 | 3 | PKU Community Rallies Around Jordanian Families |
| W | 2000 | 11 | 3 | Study Shows Long-Term Beneficial Affects of the PKU Diet Even For Late-Diagnosed Persons |
| W | 2000 | 11 | 3 | Recent Legislative Victories: - California Bill Finally Passes - Montana "Gets it all" |
| SS | 2000 | 12 | 1 | Government-Sponsored Conference to Develop PKU Treatment Guidelines |
| SS | 2000 | 12 | 1 | Paper Reviews PKU Treatment Practices |
| F | 2000 | 12 | 2 | Death of Teenager Raises Questions for Future Gene Therapy Research |
| F | 2000 | 12 | 2 | Glycomacropeptide: A Dairy Protein for PKU Diets |
| F | 2000 | 12 | 2 | Does PKU Protect Against Cancer? |
| W | 2001 | 12 | 3 | Government-Sponsored Conference Sets U.S.
PKU Screening & Treatment Guidelines - Summary of the PKU Consensus Statement - Meeting Controversies |
| SS | 2001 | 13 | 1 | Young adults with PKU: preliminary report of a follow-up study by Dr. Richard Koch |
| SS | 2001 | 13 | 1 | Meta-Analysis Looks at PKU Treatment Outcome by Dr. Marilyn Welsh |
| F | 2001 | 13 | 2 | Ohio Conference Draws People from 30 States
and Seven Other Countries - Brain Phe and PKU - Phenylketonuria: The Irish Experience - ADHD and PKU |
| SS | 2002 | 14 | 1 | Two Utah Groups Work on Home Monitoring Device (Aciont and Univ. of Utah's ChemChip Project) |
| SS | 2002 | 14 | 1 | Glycomacropeptide (GMP) Update |
| SS | 2002 | 14 | 1 | BH4 May Help Hyperphe |
| F | 2002 | 14 | 2 | Results from the International Maternal PKU
Study - A Brief History of MPKU - Organization of the Study - Treatment Plan - Study Results |
| F | 2002 | 14 | 2 | Large Neutral Amino Acids Can Block Phenylalanine Transport into Brain Tissue in Patients with PKU: An Alternative Approach to Treatment? |
| W | 2003 | 14 | 3 | International Meeting in Denmark Considers
Present Knowledge of PKU and Future Challenges
- PKU in the Twenty-First Century - PAH Enzyme Structural Studies - Investigation of Phe Transport into the Human Brain |
| W | 2003 | 14 | 3 | Researchers Collaborate to Produce Natural High Protein Diet for PKU |
| SS | 2003 | 15 | 1 | Will Tetrahydrobiopterin Have a Role in PKU treatment? |
| SS | 2003 | 15 | 1 | Treating Previously Untreated PKU Adults |
| SS | 2003 | 15 | 1 | Sixth Annual Guthrie Scholarships & Awards: Kelly Dubois, Georgia-Leigh Hearn, Steven Kaverman, Tracy Olson, Kasey Cote, Nicholas Crimarco, Karen Weishuhn |
| F | 2003 | 15 | 2 | Collaborative Study Shows Why Adults Need to Remain on the PKU Diet |
| F | 2003 | 15 | 2 | How PAH Gene Mutations Cause PKU, And Why Mechanism Matters: A Drama in Four Acts |
| W | 2004 | 15 | 3 | First International Conference for PKU Adults and Teens Draws People from Eight Countries |
| W | 2004 | 15 | 3 | Research on Alternate PKU Treatment: PreKUnil, PAL or Phenylase, BH4 |
| SS | 2004 | 16 | 1 | BioMarin Forges Ahead with Research on PKU Diet Alternatives |
| SS | 2004 | 16 | 1 | How Much Protein is Needed in PKU Treatment? |
| SS | 2004 | 16 | 1 | Fatty Acid Status of Metabolic Patients: To Supplement or Not to Supplement? |
| F | 2004 | 16 | 2 | Recent Advances in Cell and Gene Therapy for PKU |
| W | 2005 | 16 | 3 | One Enchanted Evening Nets $300,000 for PKU Research! |
| W | 2005 | 16 | 3 | Working Passionately to Find PKU Treatment Options |
| W | 2005 | 16 | 3 | BioMarin Continues to Investigate Two New Pku Treatments |
| SS | 2005 | 17 | 1 | International Group Meets to Consider Emerging Role of Tetrahydrobiopterin in PKU Treatment |
| SS | 2005 | 17 | 1 | Transgenic Soybeans Produce the First Phe-Free Protein |
| F | 2005 | 17 | 2 | New PKU Home-Monitoring Device Undergoes FDA Review |
| F | 2005 | 17 | 2 | The Phenylalanine Ammonia Lyase Project: A Couple of Pals Working on PAL |
| W | 2005 | 17 | 3 | National PKU Awareness Month in May Will Promote Research |
| W | 2005 | 17 | 3 | Update on PKU Research at the Scripps Institute |
| W | 2005 | 17 | 3 | Pioneering Therapeutics for PKU: A Report on BioMarin’s Progress |
| SS | 2006 | 18 | 1 | Celebrating National PKU Awareness Month: Research That Will Benefit from National PKU Awareness Month’s Fund-Raising (Treatment of PKU Using Large Neutral Amino Acids with Dr. Reuben Matalon; Enzyme Replacement Therapy/BH4 Response Evaluation with Dr. Raymond Stevens; Development of a Phe-Free Protein for Enhancing the Diet with Dr. Harold Trick) |
| SS | 2006 | 18 | 1 | Potential New PKU Therapy is One Step Closer |
| SS | 2006 | 18 | 1 | Helping Women with PKU Have Healthy Babies: The "Resource Mothers" Program |