PKU Support Information, PKU Provider and Service Information

This is a list of various resources mentioned in National PKU News. Note: Prices are approximate and may be out of date; they are not updated each time the list is updated. Please check with distributor for current price.

Internet Groups

Internet Listserv Group (for parents, affected persons and professionals)
To join, send an e-mail request to: listserv@listserv.cc.emory.edu In the body of your email, include: SUBSCRIBE PKU-SUPPORT-L [first name] [last name].

Internet Adult/Teen Listserv Group (for affected persons and their spouses/significant others)
To join, send an e-mail request to: pkuadult@aol.com . Include your name, age, city/state, country.

Internet Late-Treated Adults Listserv Group (for families and affected persons diagnosed with PKU after early infancy)
To join, send an e-mail request to: Coalition4pkuad@aol.com . Include your name, address, city, state, zip, country, age of late-daignosed family member and age of diagnosis. You will then be sent an invitation to join the group.

Sources for Low Protein Foods and Items Useful for PKU Diet Management

Applied Nutrition
273 Franklin Ave.
Randolph, NJ 07869
Contact: Maureen & Rick Finkel
Tel: (800) 605-0410 or (201) 361-7004
FAX: (201) 261-6707
Web site: www.medicalfood.com
Products: Phenylade medical food, Phenylade Amino Acid Bars, Amino Acid Blend, Protein-free confectionary bars (candy also can be used for coating/dipping), Chocolate covered raisins

Bickford Flavors 19007 St. Clair Ave.
Cleveland, OH 44117
Tel: (800) 283-8322 or (216) 531-6006
Products: Peanut butter flavoring, Cream cheese flavoring, plus approximately 150 other flavorings

Cambrooke Foods
2 Central St.
Framingham, MA 01701
Tel: 866-4-LOW PRO (866-456-9776)
Fax: 978-443-1318
E-mail: sales@cambrookefoods.com
Web site: www.cambrookefoods.com
Products: bagels, specialty breads, pastas, cheeses, baking products, snack foods and chocolates, etc.

Chicago Distribution Center
11030 Langley St.
Chicago, IL 60628
Tel: 1-800-621-2736 or (773) 568-1550
E-mail: kh@press.uchicago.edu
Products: Low Protein Cookery for PKU (3rd Edition, 1998, ISBN # 0-299-15384-3)
Price: $21.95 + shipping. See order form for information on shipping costs.

Children's PKU Network
1520 State Street, Suite 240
San Diego, CA 92101
Tel: 866-4-LOW-PRO (866-456-9776) toll free
Fax: (619) 233-0838
E-mail: PKUNETWORK@aol.com
Products: Polder gram scales (discount). Offers various PKU services & information, including emergency assistance for needy families(low protein products, scales, etc.

Dietary Specialties
10 Leslie Court
Whippany, NJ 07981
Orders: 888-640-2800
Fax: 973-895-3742
Web site: www.dietspec.com
Products: pastas, bagels, cheeses, cheese sauce mix, cookies, baking products, chocolates, etc.

Ener-G-Foods
P.O. Box 84487
Seattle, WA 98124-5787
Tel: (800) 331-5222 or (206) 767-6660
FAX: (206) 764-3398
E-mail: samiii@ener-g.com
Web site: www.ener-g.com
Products: Various low protein products, Low protein hard cheese (mozzarella, cheddar), Washington's Seasoning & Broth, Vance's DariFree Drink Mix.

HR, Glutino.com
1118 Berlier St.
Laval, Quebec, Canada H7L 3R9
Tel: 1-800-363-DIET (3438) or 450-629-7689
E-mail: info@glutino.com
Web site: www.glutino.com
Products: various low protein products.

Kingsmill Food Co., Ltd.
1399 Kennedy Road, Unit 17
Scarborough, Ontario
Canada, M1P 2L6
Tel: (416) 755-1124
FAX: (416) 755-4486
Web site: www.kingsmillfoods.com
Products: Various low protein products

Lil’s Dietary
2738 W. 111 St.
Chicago, IL 60655
Tel: 773-239-0355
FAX: 773-239-0357
Web site: www.lilsdietary.com
Products: wide range of low protein foods from many manufacturers

LoProfin Products
Scientific Hospital Supplies, Ltd. (SHS)
Contact: Mark Defries
P.O. Box 117
Gaithersburg, MD 20877
Tel: (888) LOPROGO (566-7646)
FAX: (301) 963-7026
Web site: www.shsna.com
Products: Complete line of pasta, baking mix, cookies

Mead Johnson
2400 W. Lloyd Expressway
Evansville, IN 47721-0001
Tel: (800) 457-3550 or (812) 429-6399
FAX: (812) 429-7189
Web site: www.meadjohnson.com/metabolics
Products: Medical foods: Lofenalac, Phenyl-Free, Phenyl-Free 2, and Phenyl-Free 2 HP

Med-Diet
3600 Holly Lane North
Plymouth, MN 55447
Tel: (800) MED-DIET (633-3438) or (612) 550-2020
FAX: (612) 550-2022
Web site: www.med-diet.com
Products: Various low protein products, Hunt's Lemon Snack Pack Pudding.

Muffin Bakehouse
97 Dundale Ave.
Blockhouse Bay
Auckland, New Zealand
Products: Vegetable crackers (tasty, very low phe "normal" cracker)
Price: $18.22 for 12 packages, $59.62 for 48 packages.
Note: Accepts Foreign bank draft, Traveler's checks, cash. The price information here is very old.

National PKU News
Virgina Schuett, MS, RD, Editor
6869 Woodlawn Ave NE #116
Seattle, WA 98115-5469
Tel: (206) 525-8140
FAX: (206) 525-5023
E-mail: schuett@pkunews.org
Web site: www.pkunews.org
National PKU News (newsletter, 3 issues/year) See Order Form. 1 year: $18 US, $22 USD Canada, $28 USD Foreign
Administers Robert Guthrie PKU Scholarship (see separate entry for application and donations)

New England Connection for PKU and Allied Disorders
John Sullivan
New England Connection
5 Jones Lane
East Sandwich, MA 02537
Tel: (508) 888-2295
FAX: (508) 888-2295
E-mail: mcgrath.donna@comcast.net
Products: Polder gram scale, Ohaus gram scale, Breadman TR810 bread machine, Breadman TR560 Bread machine, Salton-Maxim Pizza Maker, Thundermixer hand mixer for formula, No-Mess Dough Board.

Nutricia North America
P.O. Box 117
Gaithersburg, MD 20877
Tel: (800) 365-7354 or (301) 840-0408
FAX: (301) 963-7026
Web site: www.shsna.com
Products: Medical foods (Periflex, Maxamaid, Maxamum, Phlexy 10 System), Flavor packets (for medical food), Phe free Santa Claus, Phe free Easter eggs, Various low protein products (Loprofin line). Also distributes Low Protein Bread Machine Baking for PKU, the Low Protein Food List for PKU and You and PKU.

PKU Perspectives
P.O. Box 696
Pleasant Grove, UT 84062
Tel: 1-866-PKU-FOOD or 801-785-0952
FAX: 801-785-0952
E-mail: Karen@pkuperspectives.com
Web site: www.pkuperspectives.com
Products: wide range of low protein foods from various manufacturers, including ice cream mix, burger mixes, and hot dog mix

Rich’s
127 Airport Rd.
St. Simons Island, GA 31522
Tel: (888) 732-725
E-mail: rsp-customer.relations@rich.com
Web site: www.Richwhip.com
Products: Rich’s Richwhip Topping (whipped and liquid), Rich’s CoffeeRich

Robert Guthrie PKU Scholarship Fund
Make donations to:
c/o National PKU News
Robert Guthrie PKU Scholarship Fund
6869 Woodlawn Ave. NE #116
Seattle, WA 98115-5469
Note: Scholarship applications available August 1 each year. Applications must be completed by November 1.

Abbott Nutrition
Abbott Nutrition
Abbott Laboratories
585 Cleveland Ave.
Columbus, OH 43216
Tel: (800) 227-5767 or (614) 624-7677
FAX: (800) 614-3453
Web site: www.rossmetabolics.com
Products: Provider of medical foods (Phenex I, Phenex 2 and medical foods for other metabolic diseases.)

Solace Nutrition
One Research Court Suite 450
Rockville, MD 20850
Tel: 1-888-8-SOLACE or 888-8-765223
FAX: 401-633-6066
Web site: www.solacenutrition.com
Products: LNAA products (PreKUnil and Neophe) and Sol-Omega essential fatty acid supplements suitable for the PKU diet

Specialty Food Shop
555 University Ave.
Toronto, Ontario, Canada M5G 1X8
Tel: 416-977-4360
Fax: 416-977-8394
E-mail: sfs@sickkids.on.ca
Web site: www.specialtyfoodshop.com
Products: various low protein products and medical foods.

Taste Connections
Tel: 310-371-8861 or 310-798-1935
E-mail: lowpro@webuniverse.net
Web site: www.tasteconnections.com
Products: variety of low protein foods all developed by Taste Connections, including baking mixes, decorated cookies and cookie mixes, muffins, popping tapioca (phe-free snack), brownie mix and bread mix.

Tastee Apple Co.
60810 CR 9
Newcomerstown, OH 43832
Tel: (800) 262-7753 or (614) 498-8316
FAX: (614) 498-6108
Web site: www.tasteeapple.com
Products: Tastee Apple Chips ($19.00 for 12 bags), Tastee Apple Fiber (used in some low protein breads and baked goods; adds nice flavor and texture).