Meet Valerie Morris, the Mom Behind Cure for Emmery
Since her daughter Emmery’s diagnosis in 2022, Valerie Morris has turned her love for her little girl into action. Through her initiative, Cure for Emmery, she has organized multiple community fundraisers, including a silent auction and a golf event, with proceeds supporting KIF1A.ORG’s mission to drive research toward treatments and a cure for KAND.
In total, Valerie has raised a staggeringly impressive amount of donations for KIF1A.ORG, totaling over $225,000!
Community-led fundraising is one of the most powerful ways our families and friends move our mission forward. These events fund science, community programs, and they also remind us that no one faces KIF1A alone. We sat down with Valerie to hear what inspires her, what she’s learned, and the advice she has for anyone thinking about hosting an event of their own.
A Conversation with Valerie Morris
What first inspired you to host a fundraiser for KIF1A.ORG?
Emmery received her diagnosis February 8, 2022, soon after she turned 2 years old. I fell into such sadness and depression as my heart ached for the life that she would never be able to live. About 2 months after her diagnosis, Dylan hosted a scientific community call focused on CRISPR as a potential gene therapy for KAND. His discussion truly lifted me up off rock bottom as I realized there was at least the possibility of having a cure for Emmery in the future. I knew after that, I needed to do everything I possibly could to make that dream a reality.
What is your favorite part about hosting your fundraisers?
The feeling of accomplishment after each one is such a good feeling. Just knowing that all of our hard work has paid off and that maybe it will take us one step closer to finding a cure for KAND.
How do you get your friends, family, coworkers, or broader community involved?
I text, call, post on social media, and talk in person to anyone and everyone about my sweet Emmery! I also post on the local “What’s Happening” Facebook community pages. I tag plenty of people when making a post on my personal Facebook and Instagram pages. Most of the companies that sponsor our events are places that a friend works at. It definitely helps to have a connection versus emailing a company that I don’t have connections with.
What are some “tips and tricks” you’ve learned over the years related to community fundraising?
Determination! And don’t be afraid to reach out! You can’t be told yes unless you ask!
Has fundraising changed how connected you feel to the KIF1A community? How?
Yes! The KIF1A family members always let us know how thankful they are for the work that we are doing. We aren’t just doing these fundraisers for Emmery, we hope that it will benefit all of our KAND warriors. I LOVE going to the KIF1A conferences and getting to talk to and see everyone. It’s such a special time being around others that know exactly what we are going through.
You’ve organized both an auction and a golf event. What have you found most rewarding about bringing people together to support KIF1A?
It’s such an uplifting thing to see all of the people who care enough about Emmery and love her so much that they donate their time, effort, and hard earned money to KIF1A.org. That feeling will never get old no matter how many fundraisers I end up doing. I take a moment at each event to just look around at all the people there and allow myself to feel all the feelings. I’m so thankful for our community.
For someone who’s never organized a fundraiser before, asking friends and family for support can feel intimidating. Did you feel that way when you started? If so, what helped you get past it?
Yes, I absolutely felt intimidated! I talked to some of my friends and family members about what they thought about the fundraisers before I decided to for sure do them. It helped talking to people in the community about it before committing to them. It put my mind at ease knowing that I at least had some support!
What advice would you give someone who wants to do something simple to support KIF1A but isn’t sure where to begin?
Check out the Fundraising page on the KIF1A website! I, along with other parents who have done fundraising events before, have compiled all of our tips there! I leaned heavily on the “Trivia Night” Fundraiser Playbook that another parent put together when I was planning my first Silent Auction!
What keeps you coming back and wanting to do more for KIF1A.ORG?
I would do anything for Emmery! (I know all of us feel that way about our children!) Each time we get an update about progress that’s being made in the scientific community for KIF1A, it just motivates me all over again! I love getting on the community calls to hear all of the amazing progress that is being made towards a hopeful cure. Most recently being the advancements made by Jackson Lab and prime editing for KAND!
Inspired to Get Involved?
Thank you, Valerie, for everything you and your family do for Emmery and for every KAND warrior. You can follow along with her work at cureforemmery.com.
Whether you’re dreaming up a big event or a simple idea, we’d love to help. Visit our Fundraising page for playbooks and tips from families who have been there, or email us at impact@kif1a.org to talk through your idea. As Valerie says, you can’t be told yes unless you ask!
