National PKU News Index

Special Features (Updated Through Volume 18, Number 1, Spring/Summer 2006)

To order back issues of National PKU News, use this order form.

ISSUE

YR

VOL

NO

TITLE

SS

1989

1

1

Dining Out at the University

SS

1989

1

1

Reflections of a Parent: Dining Out at the University

F

1989

1

2

A special feature story on Jenny Weland: Maryland PKU adult

F

1989

1

2

"Desserting" the Traditional PKU Clinic

W

1990

1

3

Cooperative Efforts Result in Laws Favorable to Coverage of PKU Formulas
- Wisconsin
- Washington
- Texas
- Montana

SS

1990

2

1

A Grandparent's Point of View: various tips for grandparents

F

1990

2

2

Orphan Drug Act Reauthorization 1990

F

1990

2

2

PKU Medical Foods and Insurance: Results of Questionnaire

W

1991

2

3

Coping with Painful Procedures: PKU and Blood Draws

SS

1991

3

1

Tips for Dealing with Blood Draws at Different Ages & Tips from Those Who Have "Been There"

F

1991

3

2

Sale of Low Protein Foods at the Local Grocery Store? (North Carolina)

W

1992

3

3

Self-Management Skills: The Key to Successful PKU Treatment
Part I: First Steps - Teaching your Young Child the Basics

W

1992

3

3

A Comparison of Five Blood Drawing Devices

SS

1992

4

1

Self-Management Skills: The Key to Successful PKU Treatment
Part II: Moving Ahead and Walking Strong - Promoting Self-Management for the School Aged Child
- Goals for cooking with younger children
- Role playing: younger children
- Role playing: older children

F

1992

4

2

Self-Management Skills: The Key to Successful PKU Treatment
Part III: Standing on Your Own Two Feet - The Adolescent Years and Beyond
- Tasks of Psychosocial Development for Adolescents & Young Adults
- PKU Management Tasks for Adolescents & Young Adults

W

1993

4

3

Seeking Legal Advice For PKU-Related Insurance Disputes
- The role of your insurance policy
- Importance of the "conditions"
- Mandated coverage
- Act quickly if you have a dispute
- Arbitration vs. traditional law suits
- Selecting experts to help you
- Types of claims available to you
- Hiring an attorney

SS

1993

5

1

Highlights of the E.S.PKU Conference in Poland
- "Diet for Life" and Recommended Phe Levels
- The First Child Treated for PKU
- PKU Research in Poland
- PKU and Adolescence: "Diet for Life"
- PKU in Poland and Croatia

F

1993

5

2

Living with PKU: Dealing with Formula Battles
- Troubles Start at Weaning
- Later Troubles

W

1994

5

3

Living with PKU: Dealing with Food Stealing and Teasing

SS

1994

6

1

The Antonacci Family from Argentina

SS

1994

6

1

The Prodromou Family from Cyprus

F

1994

6

2

Answers to Your Questions About PKU Medical Food (Formulas)
- Why can't the formula be made to smell and taste better?
- Why can't the formula be put into a pill form?
- Why are the formulas so expensive?
- Why is there more than one supplier - production of foods is so expensive?
- Why couldn't there be a ready-to-use formula?

W

1995

6

3

Answers to Your Questions about Low Protein Foods
- Why are the foods so much more expensive than regular foods?
- Why can't there be a bigger variety of prepared low protein foods?
- Why can't the low protein foods be made to taste better?
- Why can't a low protein substitute for meat or cheese be developed?
- Why can't the low protein foods be made available in grocery stores?

SS

1995

7

1

Feeding Problems in PKU and Tips for Prevention
- Preventing Feeding Problems
- Drinking the Protein Substitute

F

1995

7

2

Self-Management Skills: The Key to Successful PKU Treatment
- Food Habits Develop Early
- Benefits of Involving Your Child in Food Preparation
- PKU Role Playing Activities
- Parents as Effective Managers
- Tasks of Adolescents
- Table: Self Management Tasks for Children

W

1996

7

3

Improving Diet Compliance
- Don't be overindulgent
- Avoid Power Struggles
- Coordinate teamwork
- Consider a reward System
- Table: Recommendations for Improving Diet Compliance

SS

1996

8

1

The Einarsdottir Family from Iceland

SS

1996

8

1

The Zhuikov Family from Russia

F

1996

8

2

The Cardoselli Family from Italy

F

1996

8

2

The Kanbur Family from Turkey

W

1997

8

3

Treating PKU in Adulthood
- For Professionals: Starting an Adult Clinic
- Meeting Adult Needs
- For Young Adults: Reviving PKU Treatment
- A Real Life Story of Change

W

1997

8

3

Stages of Change: Returning to PKU Treatment

SS

1997

9

1

Twenty-Five Years of PKU: Looking Back, Virginia Schuett's experiences
- PKU in Its Infancy
- The Early Diet
- Stopping Treatment: The Divisive Issue
- Outcome of Early Treatment

F

1997

9

2

E-Mail Q & A
- PKU & ADD/ADHD
- PKU, Depression & Anorexia
- Treating Older Adults
- PKU & Behavior Problems
- Computer Diet Program
- PKU & Diabetes
- PKU "Pill"?
- Phenylase Research

W

1998

9

3

The Presterud-Kavli Family from Norway; The Sivakumar Family from India

SS

1998

10

1

The 1998 Robert Guthrie Merit Awards:
Profiles of Jason Abbott, Daniel Brandl, Blythe Milbury-Steen, Chris Pierson, Sanna Icks

W

1999

10

2

Stories from Families of Guthrie Scholarship Winners
- The Brandl's Story
- The Milbury-Steen's Story

SS

1999

11

1

Eight Outstanding Young People Receive Guthrie Awards
- Major winners: Justin Young, Daniel Wells
- Merit Award Winners: Michelle Hughes Blankenbaker, Eric Blundell, Dana Fleming, Erin LaMourie, Dianne Obert, Katie Reisig

F

1999

11

2

Planning Celebrations, by parent Marsha Magol
- Parallel Traditional Foods with Special Foods
- Start Your Own Traditions - Encourage Meaningful Non-Food Traditions

W

2000

11

3

Stories of Three Late-Diagnosed Adults
- Mickey’s Story
- Cathy’s Story
- Henry’s Story

SS

2000

12

1

Guthrie Awards Honor Nine Outstanding Young People with PKU:
- Co-Winners of the Third Guthrie Scholarship: Thomas (Nate) Frizzell, Andrew Pugsley
- Guthrie Merit Awards: Anna Allison, Jessica Frank, Katherine Goossens, Barta Levante, Megan Hamilton, Anthony Moccia, Amy Speichert

F

2000

12

2

 A Mother’s Story (about Guthrie Scholarship winner, Nathan Frizzell)

W

2001

12

3

 Organized Sports, Exercise, and Self-esteem

SS

2001

13

1

 Fourth Annual Guthrie Scholarship & Awards:
-Scholarship winners: Nina Bjerkebo, Siljan, Norway; Mary Della Brown, Cedar City, UT; James Mannenbach, Eagle Point, OR.
-Merit Award winners: Christine Cornelio, CAFB, SC; Gina Liscio, Ventnor, NJ; Natasha Hafez, Wilton, CT; Erin McGrath, Wilmington, MA; Samantha Ruppert, Winona, MN; Brian Unterborn, Kendall, NY.

F

2001

13

2

 Achieving Healthy Outcomes for Children with PKU, Part 1 (includes developmental achievement charts for early childhood, middle childhood and adolescence)

SS

2002

14

1

 Fifth Annual Guthrie Scholarship & Awards:
-Scholarship winners: Mark Brenneman, age 18, Portland, OR; Helen Johnson, age 17, Arden Hills, MN; John Kelly, age 18, Albuquerque, NM; Brittany Mitchell, age 18, Garland, TX.
-Merit Award winners: Michael Brewer, age 17, Bayside, NY; Mary Buchowski, age 35, Sterling Heights, MI; Martin Crummy, age 17, Newry, N. Ireland; Gabor Filotas, age 22, Tab, Hungary; Maria Jouikova, age 19, Toronto, Ontario, Canada; Susannah Leaver, age 28, Greenwood, IN; Leah Orwig, age 18, LaFayette, IL; Ashley Sullivan, age 18, Berkley, MA.

F

2002

14

2

 Mark's First Year (story by a parent with 6 recipes and other food ideas for toddlers)

W

2003

14

3

 Returning to Diet: Factors for Success (Social Support, Positive Attitudes, Manageability, Special Resources, References)
SS 2003 15 1 Feed Me, I'm Yours for Four Years (managing the diet in college)
F 2003 15 2 Food & Inspiration for the Winter Holidays: Many recipes and tips for less stressful holidays
W 2004 15 3 On Starting PreSchool and Turning Three
SS 2004 16 1 Seventh Annual Guthrie Scholarships and Awards
F 2004 16 2 Ask the Doctor:
- PKU and Autism;
- difference between hyperphe, mild PKU, and classical PKU;
- PKU and male fertility;
- PKU inheritance;
- determining a PKU carrier;
- incidence of PKU in other countries outside the US;
- PKU diet and hair falling out; PKU and aggression;
- PKU and arm twitching
W 2005 16 3 PKU and the Obesity Crisis (And Other Related Issues)
SS 2005 17 1 Eighth Annual Guthrie Scholarships & Awards
- Scholarship winners:
   Virginia Harrison, age 18, Flourtown, PA;
   Hannah Marcum, age 17, Clay City, KY;
   Ryan Michel, age 18, Clinton, IA;
   Jacob Rosetti, age 18, Pacific Palisades, CA

Merit Award winners:
   Makenzie Wesner, age 18, Lake Oswego, OR;
   Bradley Hughes, age 18, Lubbock, TX;
   Jamie Sullivan, age 18, Berkley, MA;
   Katlin Kormanik, age 18, Johnstown, PA;
   Kiera Nowacki, age 18, New Albany, OH;
   Jennifer Gaydos, age 18, Sanbornton, NH;
   Juan Curuchet, Buenos Aires, Argentina;
   Dinal Lier, age 22, Stuttgart, Germany
F 2005 17 2 Brothers, Sisters, and PKU: Lifelong Companions
W 2006 17 3 Acquired PKU: Making History at Age 65 (story of liver transplant patient in Ireland who acquired PKU through the transplant)
SS 2006 18 1 Ninth Annual Guthrie Scholarships & Awards
-Scholarship winners:
   Jacqueline Kellish, age 17, Manlius, NY;
   Jeron Mortenson, age 18, S.Jordan, UT;
   Alison Dietrich, age 22, Veneta, OR

Merit Award winners:
   Nicolas Louis, age 18, Manhasset, NY;
   Jeffry Bird, age 18, Hilton, NY;
   Will Schuldt, age 18, Tripoli, IA;
   Lucas O’Donnell, age 17, East Bridgewater, MA;
   Whitney Sisto, age 19, Duxbury, MA

 

Last update: August 2006
National PKU News: www.pkunews.org
E-mail: schuett@pkunews.org