PKU Organization of Illinois

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Palatine, IL
PKU Organization of Illinois

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A nonprofit organization and resource for local & worldwide families dealing with Phenylketonuria

10/29/2026

📣 SAVE THE DATE! 💙💚

We’re going VIRTUAL this year! 💻✨

Join the PKU Organization of Illinois & Allied Disorders for our Annual Meeting!

📅 Saturday, November 7, 2026
⏰ 10:00 AM CST
📍 Virtual — Join us from anywhere!

Our organization is built on the strength of our incredible PKU and allied disorders community. 💙

We invite you to connect with us, hear what’s happening within our organization, and learn how we can continue supporting and strengthening our community together.

Whether you’ve been involved for years or are just getting to know us, we’d love to have you join!

💚 Mark your calendars — we hope to see you there!

Registration is optional but appreciated to help us plan for attendance!

📌 Link to register

https://lp.constantcontactpages.com/ev/reg/z8tmryu/lp/482d1245-0418-4b8d-beca-7f70c8b4324d?source_id=e05aed7a-78a8-40fe-a6e9-43a1a4c599a6&source_type=em&c=QJVVudHhjYbwt3Ye_9DE5bSVhF6Xsja61Ji7DVc6n9dpz-5ipNoT_A==

💻Link to meeting

https://meet.google.com/fqm-dfxk-edy?hs=224

10/16/2026

🌟 THANK YOU!! 🌟

A very heartfelt thank you to everyone who made our inaugural golf fundraiser a huge success!! Whether you hit the course, joined us for dinner, procured or donated auction items, bid or won auction items, donated to the organization, or supported us in any way we are incredibly grateful. A very special thank you to the talented musicians who shared their beautiful talents with us during dinner, Village Links for hosting our event and helping us through all the details, and a very very heartfelt thank you to our incredible sponsors who generously support our community!!

Listen to the end of the video for a special thank you message ☺️⛳️🏌🏼‍♀️🏌🏻‍♂️❤️

10/14/2026

Please consider participating in this research study examining how Social Determinants of Health (such as transportation, finances, location, insurance, and other life circumstances) may affect access to medical foods and formula for children with Inborn Errors of Metabolism (IEM).

Jessica Kopesky, a registered metabolic dietitian in the Genetics Department at Children’s Wisconsin, is serving as the principal investigator for this project.

The study is open to caregivers of children under 18 who have been diagnosed with an inborn error of protein metabolism that requires dietary treatment, such as metabolic formula and/or modified low-protein foods.

QR code link below

https://mcwisc.co1.qualtrics.com/jfe/form/SV_ebLKNstQJrS8EJw?Q_CHL=qr

09/22/2026

One of the most exciting parts of our inaugural From Tee to Table: PKU & Allied Disorders Golf Benefit & Evening is the silent auction, and trust us... you’re going to want to take a look.

Here are just a few of the incredible items that are available for bidding TODAY! You do not need to be present to win and we can arrange for local pickup in Chicago. Spread the link and get bidding on these awesome experiences - all bidding will end Saturday evening during the dinner portion of our fundraiser.

🌟 Lunch with Dr. Barbara Burton
A truly priceless experience.
Enjoy lunch for you and a guest with Dr. Barbara Burton, one of the most respected leaders in the PKU community.
Choose: ✅ A Chicago lunch outing on October 10
✅ A future lunch in Sarasota, Florida
✅ A virtual lunch experience at a mutually convenient time
This is an incredible opportunity for families, advocates, and supporters to connect one-on-one with a world-renowned PKU expert.

⛳ Dormie Network Stay & Play Package
Estimated Value: $5,500
Experience one of the most exclusive golf opportunities available.
Package includes:
🏌️ Golf for up to four guests
🏡 One-night stay in a private cottage
⛳ Two rounds of golf
🍽 Access to member-level club dining and facilities
Eligible destinations include:
• Victoria National (Indiana)
• Ballyhack (Virginia)
• ArborLinks (Nebraska)
• Briggs Ranch (Texas)
• Hidden Creek (New Jersey)
and other exclusive Dormie Network destinations.

🎟 Additional Auction Highlights
🏈 Chicago Bears vs. New England Patriots Tickets (October 22)
🎻 Four Tickets to the Chicago Symphony Orchestra
🍷 Premium W**e & Spirits Packages
🎁 Additional experiences, entertainment, golf, dining, and specialty items..and more!

https://www.zeffy.com/en-US/ticketing/from-tee-to-table-silent-auction

09/19/2026

Don’t let this rainy day fool you! ☀️Sunny skies and 70 degrees are in the forecast next Saturday - a picture perfect day for a round of golf!! ⛳️ ☀️

Join us at our first golf benefit benefiting the Illinois PKU & Allied Disorders communities!

We have golf only, dinner only, or golf + dinner packages available. We also have a very exciting lineup of auction items we’ll be sharing tomorrow!

Don’t wait - register today!!

09/17/2026

⛳ Golf Outing FAQs
We’ve received some great questions about our inaugural From Tee to Table: PKU & Allied Disorders Golf Benefit & Evening. Here are the answers to some of the most frequently asked questions!

🏌️ Do I need to bring my own clubs?
We recommend bringing your own clubs if you have them. A limited number of rental clubs will be available, and we’ll cover half the rental cost, but availability is limited.

👨‍👩‍👧 Are children allowed?
While we love seeing families, this event is designed as an adult fundraiser. The golf outing is physically demanding, runs on a tight schedule, and alcohol will be served. Consider making it a fun night out and enjoy the event while the kids enjoy an evening with a babysitter.

👕 Is there a dress code?
Not really! The only restrictions are: • No tank tops • No flip flops
Golf attire is encouraged, but T-shirts and tennis shoes are completely acceptable.

🕐 When does registration begin?
Registration opens at 12:30 PM.
You’ll have time to warm up and visit the driving range before the 2:00 PM sh***un start.
Please plan to arrive no later than 1:45 PM.

🍺 Will food and drinks be available before dinner?
Yes!
✅ Beverage cart available during golf
✅ Village Links Halfway House at Hole #9
✅ Lunch items available for purchase before dinner

🍝 What is being served for dinner?
Our buffet-style Italian dinner includes:
• Char-Grilled Italian Sausage with Roasted Red Peppers (GF)
• Chicken Piccata with Lemon Butter Caper Sauce (GF)
• Green Beans with Red Peppers (GF)
• Freshly Baked Bread
• Mixed Greens Salad
• Italian Pasta Salad
• Penne Pasta with Marinara Sauce
• Chocolate Cake
• Low-protein pasta available upon request
☕ Coffee, tea, and soft drinks included
🎟 One complimentary drink ticket included with dinner
🍸 Cash bar available

We can’t wait to see everyone at our very first golf benefit and evening!

📅 September 26, 2026
📍 Village Links of Glen Ellyn
⛳ Registration: 12:30 PM
🏌️ Sh***un Start: 2:00 PM
🍝 Dinner & Silent Auction: 7:30 PM

09/09/2026

The PKU Organization of Illinois & Allied Disorders invites you to join us in our 1st annual golf fundraiser!

Join us for an unforgettable day of golf, contests, prizes, community and impact. Whether you’re golfing, sponsoring, dining, bidding in the auction or just coming for the fun, you’ll be part of something that truly makes a difference.

Your participation supports the PKU Organization of Illinois, helping provide resources, education, and community for families navigating these rare disorders.

Mark your calendar, grab your foursome, and get ready to swing for a cause!

** Link to register in bio or save the graphic and use your phone QR code reader or visit our website 🎟️ **

🏌🏽‍♀️⛳️🏌🏿‍♂️

07/07/2026

Thank you Let’s Roam for your generous in-kind donation and supporting our mission to help those affected by PKU and Allied Disorders. If your nonprofit is looking for an in-kind donation, visit www.letsroam.com/donations

Address

Palatine, IL
60078

Website

http://www.pkuil.org/

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