2020 Online Events

Put these dates on your calendar! Look for detailed announcements ahead of each event via our newsletter, or check back on the event pages linked to below for more information.

September 12, 2020

Sarah Marshall, “Life Lessons from Living with PKU”

September 26, 2020

Dr. Barbara Burton, “PKU Research Updates”

October 10, 2020

New Parent Cafe

October 24, 2020

Dr. Shawn Christ, “PKU and the Brain”

All events will take place 10:30 – 11:30 AM Central Time

2020 Annual Scholarship

The PKU Organization of Illinois is continuing to accept applications for its annual Andrew Craig Memorial Scholarship!

Eligible students must submit a complete application by August 31, 2020 and meet the following guidelines:

  • Show proof that he/she will be enrolled in classes during the current school year (i.e., copy of class schedule)
  • Have been diagnosed with PKU or an Allied Disorder
  • Show proof of primary residence in Illinois (i.e., copy of Driver’s License or school ID)
  • Submit a short essay including responses to the questions indicated
  • Will apply awarded scholarship funds to college/university/vocational school expenses (i.e., course fees, textbooks, room & board)

For more information, and to download an application, click here.

2020 Events Cancellation

Hello to all-

I hope this finds you and your families safe and healthy. I wish I were here to tell you some good news, alas I am not. I am writing to let you know we are cancelling all in person events this year. This includes Family Fund Day, Family Camp, The Wine Tasting and silent auction, the Annual Meeting, and the Cookie Exchange. I know this is not news you want to hear. I do want to let you know we did not make this decision in a vacuum. We spoke with NPKUA who is in regular contact with the CDC as well as a few other patient organizations in our network. The organizations we spoke with have cancelled their in-person events as well. 

We will be having a new parent café as a virtual event this year. We are actively reaching out to vendors and clinicians to pick a date with an eye on a Saturday morning in June.

If anyone is wondering why we chose not to make the annual meeting a virtual event, let me explain our rationale: The board felt 90% of the reason for having an annual meeting is to get people together, to have children get together, to try new foods, and to talk/ reunite. This kind of human interaction cannot be replicated in a virtual event. The keynote is great, but not the reason most people attend.We are looking to see if there are any other virtual events we can organize in the coming months and would love your feedback. If you have an idea for a virtual event, please email us: pkuillinois@gmail.com and we will look into the feasibility of organizing.

Although we currently do not have any dedicated fundraising events planned, we will still have annual scholarships available and will notify everyone when scholarship applications are being accepted.

NPKUA is having some virtual seminars over the course of the year and we will let people know when they are available via email and social media posts.If anyone has any questions, comments, thoughts, or concerns, please email us and I will reply personally. We appreciate your understanding and look forward to the time when we can all meet again.Regards,

Grant Smith

President, PKU Illinois

2019 Silent Auction is only a month away!

Our annual silent auction and wine/cocktail party is only a month away – register today! There will be several great items to bid on and all the proceeds go to support our organization’s mission. Stay tuned for a special sneak preview of what to expect in this year’s silent auction. Don’t forget – register as a couple to save $25!

Register here or click the Event link below for more information on location and time.