This program is close to our hearts because we believe it is an absolutely unmet need. Last year, we made it our priority to work hard to ensure we have better resources for adults with PKU.

(Part 1) How does menopause play into all of this? How does healthy aging and PKU intersect - doesn’t it? Bone health? All these kinds of things. We don’t always have these answers because this adult group is the first to reach this age benefiting from newborn screening and intervention as infants/children, etc. So we need to help them navigate this.

(Part 2) We need to FIND adults who were released as children with the belief that they would do well in the future. We know better now. We owe it to them to try to find them and do things right. So, in short, this is the two-part goal of Drive to Thrive. 

Maintain the "Drive to Thrive" with appropriate PKU treatments. Adults in therapy always notice how much better food and breast milk are NOW than they were when they were children. We have treatments for PKU that make managing PKU easier. Whether it’s Kuvan, which is currently approved and paid for in Canada (depending on your situation), or Palynziq, whose use has been approved in Canada and is working out the fine details of payment. We have ongoing (or upcoming) trials in Canada that could radically change the lives of people with PKU - or future therapies such as gene editing and gene therapies. This is the perfect time to treat your PKU as we work towards a cure. Many adults have no idea about the benefits of returning to care - and that it won’t be the same as it was when they were kids! We need to help change that! 

Want to learn more about other PKU adults? Reach out! Thanks to a collaboration with Ajinomoto Cambrooke, we have a limited number of wellness journals to distribute. We offer one for free to each of you who sign up with us (providing some information like your date of birth, email address, and mailing address).

Alternatively, you can also purchase your copy here. 

We welcome a donation if you think the material is worthwhile, but there is never an expectation! We are happy to help you in your Drive to Thrive with your PKU!