Summer 2000 Articles
Letter from the Officers
Cooking School
Northern Illinois Picnic
Bi-state Picnic
Central Picnic a Splashing Success
Book Review: Eating the Alphabet: Fruits & Vegetables
from A to Z
TO DO, TO DO for a great TA DA!!!
Board Members and Committees
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It is an exciting time of the year and our events are in full swing. We have just finished our organization’s s summer picnics and cooking school, are busy planning for the annual family camp September 30 and October 1, and our annual meeting November 11. There are articles about many of these events in this issue of the press.
This year we are happy to say that we provided financial assistance to the St. Louis area picnic. We have not always been able to provide an event for the southern Illinois families and hope that some were able to attend this event.
We want to express our thanks to each and every member of the board for the work that they do. Each one has many other things in their life to occupy their time, and yet they find a way to contribute to our organization to keep it alive. We have been short a couple of board members the past couple of years and the extra effort that each person has given is appreciated. So, THANK YOU for all that you do.
We have been fortunate to have non-board members volunteer to host events. MK, KG, and KU have each contributed in this way. Without this type of help, we would not be able to have as many events as we are able to have each year.
You receive an informative Press periodically during the year because AE & CE contribute many hours as editors--reviewing the articles that are submitted, providing helpful edits, selecting photographs or artwork to complement the articles, etc. JE & TE "go postal" three or four times a year assisting us with large mailings. They fold, staple, label and mail the Press, the Directory and other letters to you so that you are kept up-to-date on our activities. Kudos to each of you!
We receive the assistance of our dieticians and clinical social workers to help make our events successful and to let us know how we as an Organization can address PKU treatment issues that come to light through clinic visits. And, our doctors give time throughout the year advising us about genetic or medical aspects of PKU treatment so that we can provide accurate information to you.
Have a great fall and we hope to see you at one or both of our final two events of the year.
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Article coming soon.......
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The Northern Illinois Picnic was hosted by MK on June 10 at the Water Works in Schaumburg, IL. This is an indoor waterpark with Water Slides, Rapid Water Channel, Diving Pool, Lap Pool, and Gradual Beachlike Entry Pool. A separate room at the facility was set up for the PKU food for the picnic. Although the water park was indoors (you can't be too careful in Chicago!) it was still a beautiful day. About 25 people attended.
The kids were too excited about the water park to stop and eat but when they did they were able to sample: lo pro vegetable pizza, the new Dietary Specialties sliced lo pro cheese, fresh fruits and dip, lo pro bread, rocky road bars, banana muffins, rice krispie treats and a variety to colorful and tasty pasta salads. Parents who weren't game enough for the pool enjoyed the opportunity to share ideas with each other.
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by Nancy Brody, MS, RD Cardinal Glennon Children's Hospital, St. Louis, MO
Laurie Sprietsma, RD Washington University School of Medicine, St. Louis, MO
Keiko Ueda, MPH, RD Washington University School of Medicine, St. Louis, MO
On July 22, 2000 the Bistate (Southern IL/Eastern MO) area families and children with metabolic disorders had their Fourth annual picnic. We gathered at Shaw Park in Clayton, MO. The weather was perfect, and it was our best turnout ever.
The families couldn't believe there were two tables full of great low protein foods that they could sample and eat. Many companies donated some food and supplies for the day. Several families won drawing prizes such as a copy of Pearl S. Buck's "The Child Who Never Grew", Jean Holt Koch's "Robert Guthrie-The PKU Story" and a snow cone maker.
The children enjoyed activities such as face painting, croquet, crafts, games, and swimming. Everyone had a great time eating, learning, and meeting other families in the region. We swapped recipes and stories. The picnic was a success...everyone was excited, anticipating next year's picnic ...we hope to do it again. We are grateful to all those contributing to the picnic and to all the families who participated to make it such a fun event!
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Central Picnic a Splashing Success
Six families numbering 17 strong joined together on July 16 at the K’s house in Bloomington, IL for the Central Illinois PKU picnic. It was an afternoon filled with swimming, playing in the yard, music, food, and catching up with what each family has been doing since we last met. We were very glad that one of our dieticians and family took the time to drive downstate from Chicago for the event.
The kids were the first ones in the pool and many of the adults broke down and took the plunge after the picnic lunch. Meghan won the prize for staying in the pool the longest and was barely able to get out long enough to eat. There were prizes for all of the kids to end up the afternoon of fun.
The master chef’s in the group brought a nice selection of Low Protein PKU foods including: Pizzelles, PB&J Sandwiches, Vanilla pudding graham cracker dessert with chocolate topping, pasta salad, green bean casserole, frozen marshmallow strawberry dessert, and fruit salad.
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Jack Jett’s Book Review:
Eating the Alphabet: Fruits & Vegetables
from A to Z by Lois Ehlert
This is a scrumptious board book filled with colorful pictures of many of the fruits and vegetables that are staples of a healthy diet, including the PKU diet. It has apples and asparagus (a favorite of mine), zucchinis, and everything in between. There are foods like fig, jicama, mango, potato, radich, swiss chard and watermelon. There’s a pretty picture depicting all the featured foods and there’s at least one food for each letter of the alphabet. It’s a book that reminds my whole family of the foods to eat for a healthy diet – whether you’re eating a regular diet like me or eating the PKU diet like my Uncle Matt and Aunts Theresa and Jackie. My mom says the book is filled with food my aunts and uncle can eat – we just have to make sure to look up how many phes each serving has in the Low Protein Food List so we can help them keep track. And, while we’re keeping track of phes, I also am learning my ABCs.
Note to parents: There are two versions of this book. The larger hardcover includes a glossary and is appropriate for children from 4 to 8. The smaller board book (review above) is appropriate for children from the age of 6 months to early primary grades. Other reviews of this book have noted that it is appropriate for vegetarian or vegan families as it contain no animal products.
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TO DO, TO DO for a great TA DA!!!
Our primary event of the year is our Annual Meeting, which will be held on Saturday, November 11th. While that seems a long way off, there are many to do’s to be done before we say “Ta Da” and unveil this wonderful event. We will feature a Who’s Who list of speakers (including our physicians, Drs. Hoganson, Wong and Burton, as well as other PKU clinicians such as Dr. & Mrs. Koch and Dr. Eisensmith), participants (such as our low protein food vendors), and attendees (that’s each of you!). We are also hoping to include some special features – like workshops or a holiday cookie exchange that focus on our younger members and their families.
We could use your help to make the 2000 Annual Meeting as spectacular as the past 30 have been. We have two large projects we complete for the Annual Meeting – preparing the invitations and raffle tickets for mailing and preparing the meeting folders. These projects can be done in 2 to 3 hours if we have a group of about 10 people to assist us. Many of our children have service hours to complete for school – this project would be a perfect service hour project. Others of us have church groups that might be willing to lend a hand. We will need your assistance in late August or early September for the invitation mailing and late October for the folder stuffing. If you think you would like to participate in such a group or if you have a group that could help us, please call the PKU voice mail or email us at info@pkuil.org. We can meet at an Oak Brook area location in Naperville (whichever is most convenient for the group). We’ll provide pizza (both the PKU and non-PKU variety) and refreshments for the group. So let us know if you can help.
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Board Members and Committees
This time of year, we often write to generate interest in being a board member or helping with a committee. We elect the board of directors for the following year at our annual meeting in November. This year we will need to elect six board members. I want to take this opportunity to define what the responsibilities are in order to give you a better idea of what kind of commitment we are asking for. The reality of it is that a board member can contribute as little or as much as they are able to. We are a group of people with a common interest and anything that someone can do to help with our organization is greatly appreciated. A group of people each having a little time to give is what makes this organization work. Also, you do not have to be a board member to help out with one of our committees. We can use your help with a committee without you serving on the board.
A board members responsibilities are defined as:
Organization Committees:
Legislative Work through state and local politicians to achieve mandatory insurance coverage of foods and formulas
Annual Meeting Plan and conduct the annual meeting
Hospitality Plan social events (coffees, picnics, camps, cookie exchanges, etc.) and assist in new member orientation upon diagnosis
Fundraising Plan and conduct fundraising events (raffle, shop-n-share, product sales, etc.) and coordinate fundraising appeals to members and donors
Communications Publish PKU Press, Parent Directory, brochure, maintain internet site, and coordinate other communications to organization members
Education Monitor, gather and disseminate information to members dealing with PKU, coordinate educational activities, handle maternal PKU related matters, and monitor PKU related research efforts Legal Ensure organization complies with legal and tax requirements, maintains insurance coverage, and protects member's interests in health care and insurance legislation
Nominating Present the slate of directors to the Voting Members of the Organization for election. Voting members of the Organization are all individuals in the state with PKU over the age of 16 and all members of their immediate families over the age of 16.
If being a board member or helping with one of the committees interests you, and you have a little time to give, please let us know.
Link back to PKU Press Summer 2000
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