PKU Organization of Illinois

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Palatine, IL
PKU Organization of Illinois

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

05/26/2026

Family Fun Day is just 2 weeks away and a great way to kick off summer fun! And there’s still time to donate to our Move Your Pheet team!

Get your tickets today on our website 🎟️

04/29/2026

We have many exciting events coming up you don’t want to miss!

🐴🏕️ Registration is now open for Family Fun Day and Illinois Low Protein Family Camp. Both have been longstanding events and a wonderful opportunity to connect with low protein community members and families.

👟Also check out our team page “PKU Org of Illinois Phe Fighters” for the Move Your Pheet Fundraiser benefiting the NPKUA. What better way to celebrate PKU Awareness month than moving your pheet, making a pledge, and raising awareness for PKU! Please consider donating or joining our team and supporting this fun event that lasts all month long.

⛳️And grab your foursome, dust off the clubs and get swinging for our golf fundraiser and benefit evening on September 26th. Sponsorships available and if you are interested in volunteering for the fundraising committee and soliciting premium auction items please contact us to get involved!

We look forward to seeing our low protein community members this summer!

Registrations available on our website 🎟️

04/16/2026

Register today for our annual Family Fun Day at the beautiful BlackBerry Farm! Enjoy a picnic lunch, exploring the farm and activities, vendor samples, and meeting fellow low protein community members.

We will also be hosting our in-person event and a 50/50 raffle benefiting the NPKUA Move Your Pheet for PKU fundraiser. Family Fun Day registration proceeds will be directed to our Move Your Pheet team. Please also consider joining or donating to our team “PKU Org of IL Phe Fighters” and help us reach our $2,000 goal!

*Family Fun Day registration*
https://lp.constantcontactpages.com/ev/reg/xm6d4hm

*Move Your Pheet registration*
https://secure.qgiv.com/event/2026moveyourpheet/team/1030715

03/12/2026

We are reaching out today with an important update and a request for your support. The University of Illinois Chicago Metabolic Genetics Clinic is facing the possibility of closure. This notice has been abrupt and there are many unknown factors at this time. As many of you know, this clinic has provided specialized care throughout the entire state of Illinois; as well as collaboration and expertise for so many individuals and families in our community.

Every voice matters. Personal stories from patients, parents, and families of the community can make a powerful difference in helping leaders understand the real impact this clinic has on the rare disease community in illinois. If you are willing to participate, please call, send emails, and share to others in the community as soon as possible.

Thank you for standing together to support this clinic for our community. Your advocacy and shared voices can help ensure that individuals living with rare diseases continue to receive the specialized care they deserve in Illinois.

03/11/2026

From Tee to Table: PKU & Allied Disorders Golf Benefit & Evening

Save the Date for our 1st annual golf fundraiser and evening! The event will be held at Village Links in Glen Ellyn on Saturday September 26th! Golfers will tee off at 2 pm with dinner and silent auction to follow. More details on registration coming soon!

We are also calling all volunteers to join our fundraising committee! We need help procuring silent auction items and experiences. We will provide you with all the tools for successful fundraising and meet once a month on a day/time to be determined at our first call on Wednesday March 18th 6-7 pm. If you are interested in learning more or would like to join this committee please RSVP to the virtual meeting.

We are so excited for this event and look forward to seeing our community on the links!

https://bit.ly/4aSmEVS

03/08/2026

New Parent Cafe is next weekend! Registration still available on our website!

03/02/2026

Very exciting news for our young PKU population!

On February 27th, BioMarin announced FDA approval for adolescents 12 years of age and older with uncontrolled blood phe concentrations greater than 600 µmol/L. In their phase 3 study, participants on Palynziq showed significant mean reductions in blood phe compared to those on diet alone. Previously Palynizq was only approved for those 18 and older. The inclusion of younger populations will likely increase adherence to the treatment while having support in the family and home setting before transitioning to adulthood care and management. The full press release can be found on BioMarin.com

02/25/2026

Save the Dates 📆! We have another great year planned and look forward to seeing you throughout the year. Don’t forget registration is open for New Parent Cafe!

More details coming soon for our 1st Annual Golf Fundraiser!

02/17/2026

Join us for light bites, sips, and mingling with caregivers managing a low protein diet. Registration link below and on our website!

https://lp.constantcontactpages.com/ev/reg/4x35f4j

12/12/2025

Thank you for a wonderful year and we wish you the happiest holidays! We look forward to connecting with you in 2026!

If you could please take our quick survey we would greatly appreciate your feedback as we plan our 2026 events. Link in bio or the QR code. Thank you!!

Address

Palatine, IL
60078

Website

http://www.pkuil.org/

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