All my life I have had what I call “PKU heros” People who have influenced the evolution of PKU. Who work to improve lives of people like me. Who have impacted treatments, research, and made a difference to daily life for us.

One of my long time hero’s or I guess the proper term is Heroines, is the influential and incredible Mrs. Virginia Schuett. Founder of the national PKU news , newsletter and website.

For as long as I can remember PKU news has been a fixture of comfort and my first source of knowledge,  my first sense of community, and my first connection to the PKU world.

My mom subscribed to it when I was younger, and later she gave me the newsletters. I always looked forward to receiving  mine. Before internet and before facebook it was my only way to feel connected to other with PKU. Like I have said before, I never met anyone else with PKU until I was 13. I looked forward to the stories of inspirational PKU kids who had won the Robert Guthrie scholarship. The pen pals and the recipes. I didn’t really care for the news section when I was younger but now I love it.

I have spoken to Virginia before and I have worked with her on articles before. She has also donated to a few of my events. Each time I have the thrill like im talking to a celebrity or a person of power. unlike with an authority figure where you are nervous and anxious. When I email back and forth with Virginia I am thrilled that she has taken the time out of her life to reach out into mine. I appreciate all that she does and really look up to her. Specially with her work on the PKU food list. That I call my PKU bible. Her hard work and dedication to the community is admirable.

I would really love to meet her one day.

Even in the day and age of social media, internet , emails , websites and blogs. There is nothing like the novelty of receiving a newsletter in the mail. Its always nice to get something other than a bill in the mail. I still look forward to my copy, and I still look forward to the scholarship stories, the recipes , pen pals but now I also like to know about community events, research, news and Virginia’s opinions on PKU topics.

I feel like the PKU newsletter connects us all. No matter where we are , PKU news reaches us all , in each country, there is something relevant to each of us and its a good way to keep up with current events in other countries , to prehaps use in your own campaigns for awareness, research and the progress of PKU!

Though it is with sadness that today I learnt that PKU news is celebrating its 25 years this year but are struggling to keep it going.

Not many people are willing to pay for the newsletter any more with all the free information readily available. I try my best to continue my subscription when I can as the funds go to so much of PKU news projects. Like funding the Robert Guthrie-Richard Koch scholarship, as well as to funding the PKU food list, Recipes and cook books , and all the hard work Virginia does for our community.

PKU news is a non-profit organization that relays on donations and the sales of the newsletter.

 

Here is what Virgina has to say about PKU news:

“it is dedicated to providing up-to-date, accurate news and information to families and professionals dealing with phenylketonuria.

 National PKU News now has over 2000 subscribers who receive the organization’s newsletter. Most subscribers are from the US, but an increasing number are from other countries including from Canada, Western and Eastern Europe, South America, East Asia, and the Middle East. . Subscribers include parents, young adults with PKU, professionals, grandparents, relatives, and anyone with a connection to PKU. 

in addition to publishing the newsletter three times a year, I also produce and publish educational materials for PKU such as the Low Protein Food List and various cookbooks, including Low Protein Cookery for PKU and Apples to Zucchini: A Collection of Favorite Low Protein Recipes. I also respond to thousands of questions and requests from subscribers via telephone, letters and e-mail messages.

Contrary to what many people think, however, I have always been and am still the only employee of the organization. At one time, we had a grandparent volunteer who assisted me in the office, but not for several years. That means when you contact the organization, you should not be surprised when I answer your call or letter —- there is no one else here! I also hope that knowing I am the only one here will help you to be patient in getting a response. I have a lot to do to keep National PKU News going, and an ever-increasing amount of correspondence.

 

National PKU News rents a small office in a privately owned building in Seattle. It is not connected to any university, hospital, or PKU treatment program. Running National PKU News is my full-time job; I no longer am involved in clinical practice ”

After reading Virginia’s email to the listerve today I decided to write a post in her honour in hope of generating interest amongst my readers and perhaps persuade  you into the donating to PKU news or subscribing to the newsletter.

Here is the email that went out to the listserver today from Virginia

I am writing to let you know that the spring/summer newsletter is now at the printers and will be available for distribution soon. If you are a subscriber already and due to renew, please do it right away so that you are on the mailing list (which will be generated on April 27). If you are not a subscriber, I strongly urge you to consider starting a subscription. Please go to this link to renew or start a subscription online: http://www.pkunews.org/forms/PKUNewsLetter.htm

Of course you can also just send me a check, made out to National PKU News and send to the address below. The cost is still only $18 for US, $22 US for Canadians and $28 US for other foreign residents. This price has not changed for 15 years!

This issue of the newsletter is very special, as it marks the 25^th anniversary of National PKU News!! I started the organization in March 1989 and have had the good fortune of being able to keep it going for all of these years. Unfortunately, the newsletter is struggling financially at this time for a variety of reasons, and so I want to urge everyone to help by renewing your subscription or starting a new one–and sending generous donations if you value the organization and what it has accomplished over these past decades.

The special anniversary issue is full of inspiring stories—from this year’s Guthrie-Koch Scholarship winners, all of whom are outstanding, and from 22  of the 300  subscribers who have been with me continuously for at least 20 years. Their children are all successful young adults now, and I think you will enjoy their stories. (I plan to feature more stories from long-time subscribers in other issues of the newsletter as there were too many for a single issue.) Of course, there is also much more in the issue—some great recipes, a fascinating research report giving guidelines for treatment for adults (for the first time based on concrete biochemical/physiological findings) and much more.

Best regards,

Virginia

 

Virginia Schuett

Director, National PKU News

6869 Woodlawn Ave. NE #116

Seattle, WA 98115

 

Tel: 206-525-8140

Website: www.pkunews.org

 

So please I urge you all, to show your support for this wonderful PKU heroine and all that she does for our community. I can strongly say you will enjoy and look forward to recieveing your newsletter in the mail. And your kids will enjoy the pen pal section too!

I really hope we can keep this alive, and not let it fall into the past much like letter writing, paper mail, pen pals and even books. With today’s technology its getting harder and harder to keep things like this around and I would love to see PKU news grow with us into the future .

Thank you for your attention and consideration. I hope you consider what I have presented to you!

 

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