Good morning,
I am super excited to announce The Lost Enzyme Project has officially begun! The crowdfunding page went live last night! Please follow the link: https://bit.ly/lostenzyme to learn more.
On the site there is a video that gives a great overview of the project and study design, as well as a way to donate to the project online, or through mail-in check to the UCI Foundation address listed (My family is mailing in a check to the UCI Foundation with “The Lost Enzyme Project” written in the memo line, since there is no overage fee, meaning 100% of the funds go to the study). That said, donating online is great too, and all donations are tax deductible through the University of California Irvine 501c3.
Those of you who are moved by this campaign, might I ask something of you???
In fundraising, it is all about personal connection. If you have friends or family who you feel might also contribute to The Lost Enzyme Project, would you consider sharing the link to the UCI crowdfunding page: https://bit.ly/lostenzyme through your Facebook, Instagram, Twitter, or Email? If you could let those family or friends know just a little bit about why this project is important to you, that makes all the difference. It is in caring for each other that I find we really connect! 😇
Also, if you want to donate and work for a company or business that has a charitable donation matching program, would you please consider filling out the matching paperwork so that you might double your contribution? That would be amazing!
Lastly, I want to share an update on Oliver. Oliver had a horrific choking episode about a week and a half ago. Oliver’s airway closed twice, he stopped breathing, turned blue, and EMS was called. He went to the Emergency Department and luckily the food did not go into his airway. He did aspirate liquid, but that has cleared, thank goodness. He began swallow therapy this week.
This experience was terrifying, and it is a dreaded reminder of the nature of his progressive disease. Sometimes I feel like Dorthey watching the red sand from the hourglass slip away. (Wizard of Oz reference). We are in a race against the clock for treatment. My hope is that The Lost Enzyme Project moves with strong and swift efficiency. Please keep us in your thoughts and prayers.
With gratitude,
Laurel, Nathan, Oliver & Everett