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Connections: Letters to and from the Editor
(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 |
Parent asks for information on special programs to finance low protein purchases |
|
SS |
1989 |
1 |
1 |
Parent asks if it is reasonable for PKU child to eat a balanced diet |
|
SS |
1989 |
1 |
1 |
Editor discusses first issue of newsletter and future participation needs |
|
F |
1989 |
1 |
2 |
Editor's reflections on first issue of newsletter parents' response letters |
|
W |
1990 |
1 |
3 |
Time Saving Tips |
|
W |
1990 |
1 |
3 |
Parents request information on "the challenge" as daughter turns 3 years old |
|
SS |
1990 |
2 |
1 |
Editor reflects on first year anniversary of National PKU News |
|
F |
1990 |
2 |
2 |
Discussion of diet policies of various U.S. PKU treatment programs |
|
W |
1991 |
2 |
3 |
Editor encourages participation in National PKU News fundraising events |
|
SS |
1991 |
3 |
1 |
Japanese PKU family looking for host family for PKU son |
|
F |
1991 |
3 |
2 |
Editor provides thoughts on transition to living abroad in England for the year |
|
F |
1991 |
3 |
2 |
Researcher Dr. Savio Woo discusses concerns about gene therapy |
|
W |
1992 |
3 |
3 |
Parent's discussion about teenager's concern: Maternal PKU Study |
|
W |
1992 |
3 |
3 |
Greeting from Editor: from England |
|
W |
1992 |
3 |
3 |
A doctor discusses limitations: Maternal PKU Study |
|
SS |
1992 |
4 |
1 |
Editor discusses 4th year operations and hopes for the future |
|
SS |
1992 |
4 |
1 |
Discussion of parent's frustrations over expensive low protein foods |
|
F |
1992 |
4 |
2 |
A letter from a professor in Croatia: donations to Croatian families |
|
F |
1992 |
4 |
2 |
Newsletter editor adjusting to being back to United States |
|
W |
1993 |
4 |
3 |
Emergency assistance through Children's PKU Network |
W |
1993 |
4 |
3 |
Parent's letter: daughter's research program makes them aware of Diet for Life policy |
SS |
1993 |
5 |
1 |
Family from Norway with 15 year-old son wanting to visit U.S. |
SS |
1993 |
5 |
1 |
A parent wants a communication network with families of late treated persons |
SS |
1993 |
5 |
1 |
National PKU News celebrates its fourth anniversary |
SS |
1993 |
5 |
1 |
A 29 year old discusses desire to return to diet and moving adventures |
F |
1993 |
5 |
2 |
Parents express thanks to newsletter for information on British PKU guidelines |
F |
1993 |
5 |
2 |
American Academy of Pediatrics to review subject of PKU management |
W |
1994 |
5 |
3 |
Letter writing campaign: Health Securities Act |
W |
1994 |
5 |
3 |
Germany: annual review report (Jahresspiegel) |
W |
1994 |
5 |
3 |
Keeping track of phe: great ideas form parents |
W |
1994 |
5 |
3 |
Parent's concern about incorrect use of words "normal" and "regular" |
SS |
1994 |
6 |
1 |
- Parent expresses sentiments
about returning child to diet |
|
SS |
1994 |
6 |
1 |
Editor discusses fifth anniversary of newsletter and PKU Health Care Reform |
|
F |
1994 |
6 |
2 |
A late treated child shows significant advances with PKU treatment |
|
F |
1994 |
6 |
2 |
An off-diet woman with PKU becomes schizophrenic |
F |
1994 |
6 |
2 |
Prodigy Computer Bulletin Board (Medical Support BB) |
W |
1995 |
6 |
3 |
A couple's adventure in the British Isles |
W |
1995 |
6 |
3 |
A letter from Jennifer Burkel: off-diet at an early age and her return to diet |
W |
1995 |
6 |
3 |
Tanja Gress: German PKU teen wanting pen pals |
W |
1995 |
6 |
3 |
Children's PKU Network scholarships |
SS |
1995 |
7 |
1 |
Bo Bear Phe Counting Board |
SS |
1995 |
7 |
1 |
Other states wanting to pursue legislation similar to new Connecticut law |
F |
1995 |
7 |
2 |
Discussion of new Low Protein Food List for PKU and corrections to list |
F |
1995 |
7 |
2 |
Calling all grandparents to submit stories of grandchildren |
F |
1995 |
7 |
2 |
Reflections by the Editor on Dr. Guthrie |
W |
1996 |
7 |
3 |
Editor discusses second
printing of Low Protein Food List for PKU |
W |
1996 |
7 |
3 |
New England Metabolic
Conference Expo 3/23/96 |
SS |
1996 |
8 |
1 |
Plans for fall fund raising event |
SS |
1996 |
8 |
1 |
Western NY PKU Association First Parent's Conference 8/10/96 |
SS |
1996 |
8 |
1 |
Editor discusses new look of newsletter |
SS |
1996 |
8 |
1 |
Case manager needs information on 35 year-old PKU adult |
SS |
1996 |
8 |
1 |
Discussion of parents pursuing PKU-favorable legislation |
SS |
1996 |
8 |
1 |
Excitement about new World Wide Web site |
F |
1996 |
8 |
2 |
Central Florida store stocks PKU products, and restaurants to visit |
F |
1996 |
8 |
2 |
Editor reflects on new design of newsletter, upcoming events and the World Wide Web |
F |
1996 |
8 |
2 |
New phone number for Children's PKU Network |
F |
1996 |
8 |
2 |
New Zealand contributors donates money to PKU scholarship in memory of Dr. Guthrie |
F |
1996 |
8 |
2 |
State of Louisiana has Rich's Richwhip Topping available in Schwegmann's store |
W |
1997 |
8 |
3 |
Reader after 20 years off diet returns to diet and writes in for newsletter subscription |
W |
1997 |
8 |
3 |
Reader sends in for subscription for 25 year old PKU adult off diet since age six |
W |
1997 |
8 |
3 |
Parent wants to know how to encourage 19 year old daughter to return to diet |
W |
1997 |
8 |
3 |
Editor expresses feeling regarding return-to-diet issues |
SS |
1997 |
9 |
1 |
Editor summarizes other comments about Winter 1997 Issue |
SS |
1997 |
9 |
1 |
Editor express thanks for responses to Winter 1997 Issue |
SS |
1997 |
9 |
1 |
Professionals talk about return-to-diet experiences |
F |
1997 |
9 |
2 |
Tips for Internet access using your local library |
F |
1997 |
9 |
2 |
Ashley Sullivan, a 13 Year-old responds to a father's questions about dealing with the diet. |
F |
1997 |
9 |
2 |
New National PKU News Web Site address & E-mail address |
F |
1997 |
9 |
2 |
Applications ready for the first Robert Guthrie PKU Scholarship |
F |
1997 |
9 |
2 |
29 year old from Netherlands discusses resolve about diet for adults |
W |
1998 |
9 |
3 |
Announcement of new PKU research study in Massachusetts, looking for volunteers |
W |
1998 |
9 |
3 |
Announcement of new adult support group, The Adult PKU Connection, in California |
W |
1998 |
9 |
3 |
Announcement of letter writing campaign to the First Lady, Hilary Clinton, re: PKU issues |
|
SS |
1998 |
10 |
1 |
Request for stories from grandparents about their grandkids |
SS |
1998 |
10 |
1 |
Request for summaries of events from the past year for the Fall newsletter |
SS |
1998 |
10 |
1 |
Boston research study needs participants |
SS |
1998 |
10 |
1 |
Twenty-seven year old goes back on diet: story on Web site (Sarah Foster) |
SS |
1998 |
10 |
1 |
Thirty-seven year old adult describes terrible problems off-diet and improvements after returning to diet |
W |
1999 |
10 |
2 |
Editor announces the upcoming 10th anniversary of National PKU News |
W |
1999 |
10 |
2 |
A parent announces that Genuardi's supermarket in Glenn Mills, Pennsylvania, now carries a variety of low protein foods. E-mail: PKUParents@aol.com |
W |
1999 |
10 |
2 |
Dr. Mendel Tuchman from University of Minnesota Hospitals and Clinics announces a new and accurate blood phe monitoring service for anyone in the world (e-mail: tuchm001@maroon.tc.umn.edu) |
W |
1999 |
10 |
2 |
Dr. Richard Koch from L.A. Children's Hospital announces a new law in California mandating testing by Tandem Mass Spectrometry (which will test for over 30 metabolic disorders). |
W |
1999 |
10 |
2 |
A parent announces that Vermont has recently passed legislation mandating unlimited PKU formula coverage through insurance and at least $2500 per year per person for low protein foods. |
SS |
1999 |
11 |
1 |
Thanks from the editor to all subscribers who shared their thoughts about National PKU News on the occasion of its tenth anniversary. |
SS |
1999 |
11 |
1 |
Notice about fee increases and late fee. |
SS |
1999 |
11 |
1 |
Letter about Angel Flight, a service offering free flights for medical attention for needy families. |
SS |
1999 |
11 |
1 |
Nutritionist describes a grocery store in MO that carries some low protein foods. |
F |
1999 |
11 |
2 |
Editor discusses recent award from SERGG on the occasion of the tenth anniversary of National PKU News. |
F |
1999 |
11 |
2 |
Plea for donations to R. Guthrie Scholarship Fund. |
F |
1999 |
11 |
2 |
Reminders about new newsletter subscription renewal system. |
F |
1999 |
11 |
2 |
Parent Trish Mullaley discusses formation of new national organization for PKU and allied disorders. |
F |
1999 |
11 |
2 |
Dr. Mendel Tuchman announces laboratory move, but retention of services to people worldwide for analyzing serum phe. |
F |
1999 |
11 |
2 |
PKU adults Tracy Beck and Sarah Foster announce they are working on a book about young adults with PKU and want input from others. |
F |
1999 |
11 |
2 |
The Leas Research Product Company in CT announces a new study of VIL as a possible adjunct treatment for PKU and is looking for study participants. |
W |
2000 |
11 |
3 |
43-year-old with late-diagnosed PKU who returned to diet one year ago with positive results: mother wants to know why she was not contacted by clinic to return to diet earlier. |
W |
2000 |
11 |
3 |
34-year-old with early-diagnosed PKU wants to know why he and his late-diagnosed older brother were not contacted by clinic to return to diet. |
W |
2000 |
11 |
3 |
Announcement of new program to benefit National PKU News: On-line shopping through Greatergood.com (5% of all sales through on-line stores in the "shopping village" go to National PKU News). |
SS |
2000 |
12 |
1 |
Guthrie Scholarship donors listed |
SS |
2000 |
12 |
1 |
New contact information for New England Connection for PKU and Children’s PKU Network |
SS |
2000 |
12 |
1 |
Announcement of legislative victory in Hawaii |
F |
2000 |
12 |
2 |
Announcement about Greatergood.com program to benefit National PKU News |
F |
2000 |
12 |
2 |
Announcement of the new National Coalition for PKU and Allied Disorders and meeting for spring in Ohio |
F |
2000 |
12 |
2 |
Announcement of new PKU-favorable legislation in Kentucky, Arizona, Delaware |
W |
2001 |
12 |
3 |
Discussion of new national PKU guidelines |
W |
2001 |
12 |
3 |
Letter from Dr. Mark Etzel re: glycomacropeptide for the PKU diet (follow-up to Fall 2000 story) |
SS |
2001 |
13 |
1 |
Remembering Dr. Horst Bickel, 1918-December 2000. Dr. Bickel helped develop the first diet for PKU treatment in the 1950's |
SS |
2001 |
13 |
1 |
Ross Products announces scholarship program through Children's PKU Network |
SS |
2001 |
13 |
1 |
Guthrie Scholarship donors listed |
F |
2001 |
13 |
2 |
Robert Guthrie Scholarship applications are available. |
F |
2001 |
13 |
2 |
LA passes new legislation for formula coverage by insurance. |
F |
2001 |
13 |
2 |
Tracy Beck, PKU adult, receives her doctorate degree in astronomy and is featured in the Genomic Revolution exhibit at New York's American Museum of Natural History. |
SS |
2002 |
14 |
1 |
Announcement of meeting in Orlando, FL Oct. 3, 2002 sponsored by the National Coalition for PKU and Allied Disorders. |
SS |
2002 |
14 |
1 |
Guthrie Scholarship donors list. |
F |
2002 |
14 |
2 |
Letter from teen with PKU about her positive experiences |
F |
2002 |
14 |
2 |
Letter re: Missouri has new legislation favorable to PKU |
W |
2003 |
14 |
3 |
Letter about one parent's success with low protein sausage recipe from Spring/Summer 2002 newsletter |
W |
2003 |
14 |
3 |
Letter re: new Amer. Medical Assoc. statement encouraging states to advocate for Medicaid funding for medical foods and low protein products |
W |
2003 |
14 |
3 |
Letter re: new legislation in Kentucky favorable to PKU |
SS |
2003 |
15 |
1 |
Announcement of first Internationl PKU Teen & Adult Conference July 25-26, 2003 |
SS |
2003 |
15 |
1 |
Announcement of Smithsonian exhibit entitled Genome: The Secret of How Life Works. |
SS |
2003 |
15 |
1 |
Letter from parents of late-treated PKU woman who maintained diet throughout her life and was just married |
SS |
2003 |
15 |
1 |
Comments from Editor on BH4 research |
F |
2003 |
15 |
2 |
Letter from head of Jordanian PKU Society thanking editor for coordinating the sending of 7000 lbs. of low protein ingredients for making bread by Jordanian families |
F |
2003 |
15 |
2 |
Summary of research study on psychological impact of being a carrier for PKU |
| W | 2004 | 15 | 3 | Announcement of PKU Family Camp at Wildhorse Canyon in Oregon June 4-6 |
| W | 2004 | 15 | 3 | Announcement of Metabolic Conference in Michigan June 25-26 |
| W | 2004 | 15 | 3 | Letter re: progress of research on BH4 by Dr. Reuben Matalon |
| W | 2004 | 15 | 3 | Letter re: mutation detection at McGill University in Montreal, Canada |
| SS | 2004 | 16 | 1 | Guthrie Scholarship donor's list |
| SS | 2004 | 16 | 1 | Letter re: mutation detection program at the J.F.K Institute in Denmark |
| F | 2004 | 16 | 2 | Letter re: outcome of Tuxes for Tia fundraiser; |
| F | 2004 | 16 | 2 | Letter re: new residential center for late-treated adults with PKU (Koch-Vagthol Metabolic Residential Center) |
| W | 2005 | 16 | 3 | Letter re: storing cord blood as a possible future treatment for PKU; |
| W | 2005 | 16 | 3 | Letter re: report of a "gestational carrier" (alternative to a woman with PKU bearing her own child) |
| SS | 2005 | 17 | 1 | Letters re: Phenoptin clinical trial, metabolic camp at Emory Univrsity, and genetic mutation analysis at Empory Genetics Laboratory. |
| F | 2005 | 17 | 2 | Letters re: National PKU Awareness Month, and several fundraisers for the month. Announcement of www.pkuboard.info, an international PKU message board. |
| W | 2006 | 17 | 3 | Letters re: National PKU Awareness Month’s fundraising activities |
| SS | 2006 | 18 | 1 | Guthrie Scholarship and Awards Donors list, tribute to Dr. Stanley Berlow |