Hi everyone! Exciting announcement: Yesterday, KSMU aired an interview we did about Parker and our fundraising efforts for KIF1A.org. Here's a re-post of my Facebook update. Read on to learn more and check out our interview!
This morning, Parker, Tyler and I listened to our interview on KSMU Radio, our local NPR station. Michele Skalicky interviewed us so we could tell our KIF1A story and raise funds and awareness for KIF1A.org. Based on his bug eyes, Parker was clearly shocked to hear his voice on the radio!
This interview was my first big step in reaching out to the community to rally support around Parker and our mission at KIF1A.org. I am so grateful for KSMU making this possible. As uncomfortable (okay, let’s be honest, terrifying would be more accurate) as this can be, so publicly sharing our deepest struggles and fears, I know we cannot achieve our goal to fund treatment for Parker and his KIF1A buddies alone.
KIF1A.org is a parent-led non-profit organization and 100% of our donations are going to the Chung Laboratory at Columbia University Medical Center to continue exciting KIF1A research being led by Dr. Wendy Chung. Google her. Seriously. She’s a rock star in the genetics community. (And she participated in this interview!) Being an ultra-rare disease community, we do not have a national organization advocating for our cause. We do not have grant funding fueling our efforts - although we’re working on that! Instead, we rely on the generosity of our family, friends, friends-of-friends, and kind strangers. The power of crowdfunding is REAL. Because of people like you, KIF1A.org made our first donation to Chung Lab for $70,000 (!!!) in June. But, with an annual minimum goal of $500,000, we have more work to do!
So please: like, share, donate, pray, send good vibes, whatever you can do to support our mission to cure this neurodegenerative disorder and create a bright future for our kids.