Drive to Thrive - An Adult PKU Initiative.
Le désir de s’épanouir - Une initiative PCU adulte.
This program is near and dear as we think it is absolutely an unmet need. We made it our priority last year to ensure that we are working hard to ensure we have better resources for adults with PKU. (Part 1) How does menopause play into this? How does aging healthy and PKU cross over - does it? Bone health? All those types of things. We don't always have these answers because this group of adults are the first crew to reach this age with having the benefit of newborn screening and intervention as an infant/child etc. So, we need to help them navigate this. (Part 2) We need to FIND the adults who were discharged from care as children with the belief that they would be fine going forward. We know better now. We owe it to them to try and find them and make it right. So, in a nutshell, this is the 2 part goal of Drive to Thrive.
Maintaining the "Drive to Thrive" with proper PKU Treatments. Adults in therapy always remark how the food and formula are MUCH BETTER than they were as children. We have treatments for PKU that make it easier to manage PKU. Whether that be Kuvan which is approved and being paid for in Canada currently (depending on your situation) or Palynziq which has been approved for use in Canada and working out the finer details of payment. We have current trials happening (or about to happen) in Canada that may dramatically change the lives of those living with PKU - or therapies of the future such as gene editing and gene therapies. It's a great time to be treating your PKU as we work towards a cure. Many adults have no idea the benefits of returning to care - and that it won't be the same as when they were kids! We need to help change that!
Are you an adult or teen who is struggling with your treatment plan? Are you wanting to track your daily intake? Read a bit about other PKU adults? Reach out! Thanks to a collaboration with Ajinomoto Cambrooke we have a limited number of Wellness Journals to give out. We are offering one free to each of you who register with us (Providing some information -things like your date of birth, email address and mailing address).
Alternatively, you are also welcome to purchase your copy here.
We welcome a donation if you feel the material is worthy of one, but there is never an expectation! We are happy to help you on your Drive to Thrive with your PKU!
Êtes-vous un adulte ou un adolescent aux prises avec votre plan de traitement ? Vous souhaitez suivre votre apport quotidien ? En savoir un peu plus sur les autres adultes PCU ? Atteindre! Grâce à une collaboration avec Ajinomoto Cambrooke, nous avons un nombre limité de journaux de bien-être à distribuer. Nous en offrons un gratuitement à chacun d'entre vous qui s'inscrivent chez nous (en fournissant quelques informations - des choses comme votre date de naissance, votre adresse e-mail et votre adresse postale).
Alternativement, vous pouvez également acheter votre copie ici.
Nous accueillons un don si vous pensez que le matériel en vaut la peine, mais il n'y a jamais d'attente ! Nous sommes heureux de vous aider dans votre Drive to Thrive avec votre PKU !
We wish to thank our sponsors who are assisting with this special project. These sponsorships are in addition to any "Annual Sponsorship" they may provide to us. We are eternally grateful for their help! Are you or your organization interested in helping us with this project? Find our letter of request here or email to email@example.com.
PTC Therapeutics - Sponsorship of $10,000 unrestricted grant towards this project.
PTC is currently doing trials for PTC-923 at two Canadian sites as well as many sites around the globe. This medication is taken orally to reduce the level of PHE in the blood.
For more information see: Clinicaltrials.gov
Homology Medicines, Inc. Sponsorship of $5,000 unrestricted grant towards this project.
Homology is currently completing trials outside of Canada for pheEDIT. This is a Gene Editing Clinical Trial for PKU.
For more information see: Clinicaltrials.gov
Nutricia is a Danone brand that specialises in therapeutic food and infant formula, including medical nutrition for babies with specific needs. They manufacture formulas for those with IEMS and have a vast amount of resources available for families.
For more information see: https://www.nutricia.ca/
Ajinomoto Cambrooke offers food and formula for those living with rare diseases and inborn errors of metabolism. They have offered to collaborate with production of their Wellness Journal which was created for adults. CanPKU was able to brand this wonderful book and print copies for our Canadian Population. (in English). Ajinomoto Cambrooke is also working on translating this into French, at their cost, so our entire population can enjoy this book.
Check out the Ajinomoto Cambrooke website.