We at CanPKU+ encourage all those with HCU to consider lending your time to support research where you can. There are currently a couple of opportunities that we are aware of:
Science 37 - is We're looking for volunteers with homocystinuria (HCU) to participate in a paid, observational research study where no drug is involved. You could shape the future of HCU research – and be compensated for your participation. Linkn to the site: https://cloud.trials.science37.com/ClassicalHCUstudy/Questionnaire
Rare-X -Homocystinuria patients, families, and communities are excited to participate in data collection to expand and improve medical research. By coming to this site, you can begin the first step in making your patient information available to researchers. By generating the most comprehensive Homocystinuria Data Collection Program, we can accelerate research and the development of new drugs, devices, or other therapies. Only you hold the key to unlock future discoveries Link to the site: https://homocystinuria.rare-x.org/
CanPKU+ believes that creating awareness around Homocystinuria (HCU) and other rare diseases helps patients…Because Knowledge Leads to Better Health.
When people are aware of a condition, they are more likely to be understanding and supportive. This might be as simple as ensuring that there are appropriate food choices at the next party your child attends, or it might mean that a politician will fight on your behalf for coverage of treatments.
Riding for a Cause - (Clipped from the article) At 3 months old, freshman Carson Hunt was diagnosed with Homocystinuria (HCU) Cobalamin G (CBLG), a rare genetic disorder. This disorder has caused Hunt’s levels of the amino acid homocysteine to increase far beyond a typical amount, which has led to blindness, developmental delays and may pose other potential health issues in his future. In order to help other families dealing with HCU, Dana helped create the HCU Race for Research in 2019 to raise funds for researching the rare condition. The Race for Research will take place throughout the entire month of September. During this month, Hunt will be riding his bike 100 miles to help raise money to donate.
Introducing our HCU Chair Person - Samantha
Videos to Watch (Don't forget to Subscribe to our channel for more!)
According to Newborn Screening in Ontario the instance of a baby being born with HCU is 1 in 200,000 to 300,000. Find out more here
Downloadable Resources for Individuals with HCU
Don't forget to link back to GENERAL DOWNLOADS which have over all downloads for you.
You can also check out the resources under the Research and Patient Support Drop down menu.
*Shared with permission from HCU Americas
General Information and Links
2022 - Cambrooke has created a Wellness Journal for those with MSUD. It is USA based information but most of it still applies to Canadians. Download it here. It will provide information as well as ways to track your rare. Refill pages for tracking can be downloaded here
2021 - Nutricia - Fact Sheet
Formula Based Information
Other Websites and Resources
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