This post is an update on some exciting things that are brewing in the HCU Community.
Since I haven't posted about HCU in a while, I want to first say there has been a lot of progress since I last wrote - which is AWESOME!
I'd like to start with introducing an organization I have been following very closely since it's inception in 2014 - the HCU Network Australia. This non-profit was established by Tara Morrison. Although, I've yet to meet Tara in person, I can tell you with certainty that this woman is amazing! In the two years since it was founded, HCU Network Australia has met many milestones. Here are a few highlights:
1. Multiple fundraisers (including several running events which obviously caught my attention).
2. Creation of an app called AccuGo For HCU which helps HCU patients/parents manage the very restrictive low-protein diet.
3. First international HCU patient-expert meeting in Prague to coincide with Rare Disease Day 2016.
What Tara has started in Australia is about to spread globally.
Amongst the attendees at the conference in Prague, were two (equally amazing) women I have previously met (Margie & Danae'). You may remember these women from my blogs about their HCU experiences.
Danae's Story
Margie's Story
Margie & Danae' have been pushing for progress in the HCU community for many years, and recently inspired by attending the conference in Prague, they are on a mission to create a non-profit foundation for HCU in the US.
A few weeks ago, they organized a conference call for all interested members of the US HCU community to discuss the conference in Prague, and also the need to create a non-profit organization for HCU in the US. They plan on modeling the US foundation after HCU Network Australia. It will be called HCU Network America.
A week after the conference call, I received an email from Danae' asking if I'd consider being a board member on HCU Network America. Of course, I said, "yes". I'm thrilled to be involved with this next step of creating awareness, funding research, and changing lives of HCU patients/families in the US and globally.
So stay tuned, lot's of exciting things coming in the next few months for the HCU Community...
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