| On November 13, 1999, about 100 of our members gathered at Rush-Presbyterian-St. Luke's Medical Center for our Annual Meeting. This year's theme was chosen to commemorate the past years of service from our members, to acknowledge the more than 30 years of progress we have seen in PKU diagnosis, treatment, management and research, and to build upon this foundation as we begin a new millennium. The theme of the Annual Meeting was captured in the artwork of Maggie's submission from our logo contest. It was a beautiful introduction to our meeting program. Maggie truly has seen our theme in action--both of her parents are past board members who shining examples of the service and dedication of our members. |  |
After a short welcoming reception for our members to socialize (and make some last minute purchases of raffle tickets), we introduced one of our speakers, Dr. Hainline. We were very fortunate as an Organization to hear first-hand from Dr. Hainline about his research into modifying foods to lower the phe levels without removing all of the protein. This promising research can be applied to modify high-protein, high-phe foods, such as corn, which are strictly limited in the current PKU dietary regimen. If the phe is removed without eliminating the protein entirely from the food, individuals with PKU can increase the variety of foods in their diets and reduce the amount of formula or medical food drink they must consume. Using corn as an example, we learned how these modified foods can be consumed as is (a corn on the cob) or become the ingredient in other foods (cornmeal for breads). By increasing the variety in the PKU diet to include foods found in a typical diet, compliance with Diet for Life becomes more achievable. This promising research has moved well beyond the theoretical stage. Dr. Hainline has successfully applied his research using plants. Before this is research is broadly applied, Dr. Hainline must complete clinical trials, which involve tests with animals and humans. As an organization, we will continue to follow Dr. Hainline's research and report on any developments we learn of. We also encourage you to use the Internet to monitor progress with this research and other topics of interest.
After looking into the future of diet management, we turned our attention to the present. In one of the more popular features of our Annual Meeting, two of our own doctors provided us with a clinical update. Dr. Burton, who has assumed responsibility for the Children's clinic, discussed the importance of the dual commitment of the PKU families and the clinical staff to maintaining the diet. Dr. Burton stressed the importance of consistently monitoring and maintaining appropriate phe levels and emphasized that the clinics--dieticians, social workers and physicians--are allies of their patients in this effort.
Linda Gleason reported on Dr. Hoganson's Bone Mineralization in PKU study. The Organization achieved a long-term goal to support PKU-related research when Dr. Hoganson approached us about providing partial funding for this research. We are fortunate to have such accomplished physicians working with our families and this Organization. We also got a report on a Followup to the Naltional Collaborative Study on Children with PKU, Resource Mothers study, field test sites for an education cirriculum, and the Maternal PKU Study which will be completed in April 2000.
Dr. Hoganson discussed current and future treatment of PKU. There are two current possible treatments.
Possible future treatments lie in 4 areas.
These are promising treatments, but timewise, they are aways away. We continue to hope for their continued development and promise for the future.
Another popular feature of our meetings is the series of workshops we host in the afternoon session. This year we featured some hands-on interactive workshops, which built on the Organization's efforts in recent years to provide practical advice on the tools we need to manage the diet for life and to increase access to information through the Internet. To that end, Dee hosted "Spice It Up," a workshop that tantalized our taste buds, and Linda Gleason and Rhoda Papanastassiou, discussed various ways of keeping track of the phe's in our foods. Dee provided workshop attendees with a number of handouts discussing spices that can be used to flavor PKU foods. Dee also discussed how we can make substitutions to lessen the phe count of traditional recipes. By learning how to add spices or substitute ingredients, we can borrow from mainstream cookbooks (especially those that rely on vegetarian recipes) to add variety to the PKU diet. Dee topped off her presentation with recipe and ingredient sample that attendees could take with them to make later.
Linda and Rhoda's presentation on how to keep track of phe counts when we experiment is summarized in the "Teaching Kids How To Keep Track of Phe's" article.. As many attendees of the "Spice It Up" workshop learned, Dee relies heavily on recipes she obtains from the Internet.
In the "Nothing But Net" workshop, Bruce and Ruben conducted an interactive demonstration of our website and the other resources available through the Internet. As you can see, our workshops built upon one another and were designed to provide our members with practical tools for keeping current on PKU-related topics.
Our organization also benefited from the hard work of some of our younger members during the course of the meeting. Traditionally, when you arrive at our meeting, to sign in, get your meeting packet and turn in your raffle tickets, you are greeted by one of the Board members. This year, in addition to the usual greeting committee, Ian, age 7, ably assisted in the collection of raffle tickets and sale proceeds. Ian helped remove staples from the ticket stubs (even with staple removers, it's a big job) and helped sort and count the raffle proceeds (about $6,500). Ian was most impressed by those of you who arrived with cash. Ian's job wasn't done just yet. Ian recruited a few others, including his older sister Amanda, and Daren and Derrick H. to mix up the raffle stubs and draw out the winners. We look forward to having you all back to help us out this November.
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