Using the Internet for PKU Information and Support

As an adult with PKU I am always looking to the internet for interesting and useful information on PKU. I have compiled a summary of websites and groups that I have found of value in recent months. I hope you will find it helpful in working your way through the many online resources now available.

I am so grateful to have access to these resources and to this community that spans across nations! Though there are many useful internet opportunities available, however, it is important to remember that they shouldn’t take away from other services like newsletters such as National PKU News, and pen pals or other forms of media. Newsletters have many ways to serve us that the internet cannot. I personally love to get my National PKU News newsletter for the stories and updates, to have paper copies of the latest recipes and for the photos and pen pal information. Internet sources are not always reliable or up- to- date. Sometimes they can have technical difficulties and be unavailable for hours at a time. Even though I take full advantage of these resources I make sure not to fully rely on them and stay connected to the community in all ways possible.

--Amanda Cosburn, President of PKU Tri-Unity and creator of http://www.freewebs.com/pku-tri-unity, Member, Canadian PKU & Allied Disorders Inc., Victoria BC Canada, Summer 2009

Internet PKU Listserv Group

Of all the internet resources available, one of the simplest and most used is the international PKU Listserv. To find what you seek or to have your voice heard, the Listserve never disappoints. With more than 1500 members, the listserv group is an international emailing forum that is very close to instant. All you need to use it is a computer and an email address. When you have a question, need information, are looking for a phe amount, a recipe or advice, just write an email message and sent it to the email Listserve. Because of the large number of people who are members, you will always have a range of responses to your postings. Share your thoughts, concerns, advice and join in debates from treatment and Kuvan to needs of young children and diet. On the list serve you can interact with PKU'ers and their families from all over the world. Just be sure to send a "sign off email" when you go on a holiday or you will be flooded with hundreds of emails when you return!

To join the Listserv group:

Sign up with your email address. IT’S FREE!! All you have to do is send an email requesting to be added to the Mailing List. Be sure to include: Your first name, last name and your email address. To sign onto the listserv: Send an email to listserv@listserv.cc.emory.edu. In the text part, type: subscribe pku-support-l followed by your full name.

To sign off of the Listserv group:

Send an email to listserv@listserv.cc.emory.edu. In the text part, type: signoff pku-support-l When signing off, please remember to send the command from the email address under which you are registered. If you have any problems signing up or signing off, e-mail the Listserv Coordinator at macpku@verizon.net.

To send a message out to the forum:

once you are registered send out your first as well as all your emails to: pku-support-l@listserv.cc.emory.edu (either upper or lower case letters work) don’t forget to add the email address to your contact list so your mail from the group does not go to your Junk mail box! Group members typically sign their first name, city/state, and age of child(ren) with PKU or their age if an adult with PKU, and indicate whether they are "CPKU" (classic PKU) or "hyperphe."

PKU on Facebook

On Facebook there are close to 50 PKU groups I have found, as well as 2 "cause applications" and 4 fan pages. Groups are a place to meet with others, post photos, join discussions, and wall post your ideas and thoughts. If anyone else in the group is online at the same time that you are, you can each see the updates in real time. To chat with other members of the group instantly or privately you may want to "add them as a friend."

"Cause applications" are pages to advertise your cause or fundraiser. It’s much like a group except that you have the option to raise money for your "cause."

Fan pages are pages for your group or cause much like a Facebook profile. If you are already a Facebook member and have your own profile, all you need to do is log on and go to your group’s page, the enter "pku" in the "search groups." Can’t find what you are looking for? Create your own group! If you are not a Facebook member and would like to access these groups it’s just as simple to register--and its free. All you do is go to www.facebook.com and click on "sign up." Once you are registered and have your own profile page you can browse the groups by clicking on the group’s button on the lower left hand side of your screen. Or again simply typing "PKU" in the Facebook search.

Some PKU-Related Groups on Facebook (as of spring 2009):

1. Support children with PKU (1,022 members)
2. PKU (452 members)
3. PKandU (225 members)
4. Can you Say Phenylketonuria? I Can! (167 members)
5. Living with PKU (132 members)
6. SHS PKU Community (109 members)
7. Canadian PKU & Allied Disorders INC. (96 Members)
8. Phenylketonuria UK & Ireland (68 members)
9. PKU Kids in Canada ( 64 members)
10. PKU Awareness-online in Australia (55 members)
11. I have PKU (43 members)
12. My PKU Life-A New Nnovel (37 members)
13. New England PKU Group (33 members)
14. Phenylalanine: Twenty First Century Poison (33 members)
15. PKU Tri-Unity Committee (30 members)
16. PKU in Britain (30 members)
17. PKU : Weakness or Strength You Decide (28 members)
18. PKU Parents-New to PKU (28 members)
19. Parents of children with PKU (21 members)
20. PKU Girls are naughty (21 members)
21. PKU Weight loss support (17 members)
22. PKU World (14 members)
23. I have PKU and I am proud of it! (13 members)
24. PKU Teen-Adult conference Chicago 2008 (9 members)
25. PKU Pregnancy support (6 members)
26. Parents of kids with PKU (2 members)
27. PKU Australia (38 members)
28. Cook for Love- low protein cooking for the PKU Community (36 members)
29. Living with PKU (13 memebers)
30 : ) PKU Diet Support Group for Women ( 22 members)
31:) PKU Kids in Canada ( 67 members)


Cause Applications
Phenylketonuria (PKU) (863 members)
(PKU) Phenylketonuira (544 members)

Fan Pages
National PKU Alliance
PKU Tri-Unity
PKU Awareness Month

Message Forums

There are many PKU message forums on the internet but the three most popular are:
www.PKUBoard.info
www.PKU.com
www.myspecialdiet.com
www.shs-nutrition.com/lowproteinliving


Note: PKU Board. info is an international and very active board and is in partnership with many other boards from around the world. It has the option of use in many different languages.

To join any of these forums you may register on the site to become a member. All you need is an email address and to select a password.

Websites

There are way too many informative and supportive websites available for PKU to list, but some of my favorites are listed here:

http://www.pkunews.org
http://www.freewebs.com/pku-tri-unity/
http://www.canPKU.org
http://www.MAPAC.com
http://pku-living.ning.com/
http://www.nspku.org/what_is_PKU.htm
http://www.pkunetwork.org/
http://www.pkuil.org/
http://www.npkua.org/
http://www.michigan-pku.org/
http://www.indianapku.org/
http://www.pkunsw.org.au/
http://www.iowapkufoundation.com/
http://www.pkuworldlink.org/

Low Protein Food Companies

There are many companies that now produce and/or sell low protein products. You can order these on-line typically, and have the items shipped to your home. Most of the companies listed only distribute in the Continental US or Canada. Inquire about foreign delivery.

Low protein foods range from pastas and baking mixes to pre- made breads and pastries. Even the ever- popular hamburger and hot dog substitutes are available. Here are a few links for some low protein food distributers.

http://www.cambrookefoods.com
http://www.dietspec.com
http://www.ener-g.com
http://www.med-diet.com
http://www.medicalfood.com
http://www.myspecialdiet.com/
http://www.pkuperspectives.com
http://www.tasteconnections.com
http://www.shs-nutrition.com/
https://www.sickkids.on.ca/sfs/default.aspx
http://search.phsa.ca/