When Madison residents Britt and Valerie Morris received the worst news of their lives, they refused to sit back and do nothing. Their precious two-year-old daughter Emmery (twin to brother Maddox) was diagnosed in early February 2022 with a very rare genetic mutation called KIF1A Associated Neurological Disorder (KAND), and every day since then has been spent fighting for a cure.
This diagnosis has set the Morris family’s lives on a trajectory they never saw coming. There are just 400 people worldwide with this extremely rare diagnosis, which only fuels the Morris family to do everything they can to fund the necessary research to find a cure for Emmery.
Valerie says that Emmery had been experiencing some developmental delays since she turned 1, so they’d been swift in taking her to see various specialists at Vanderbilt.
“We knew there would be a diagnosis, but this was not the diagnosis we wanted to hear,” she says as she continues to share what they’ve learned about KAND.
“She may not ever walk independently, she could possibly lose her vision one day, and she will have some degree of intellectual disability.”
She describes these as the bigger symptoms and continues to share that one day Emmery may begin to regress in the skills she’s worked so hard to learn.
The Morris family, along with their army of loving family and friends, are now on a mission to do everything they can to find a cure for KAND.
Almost as soon as the Morris family learned about Emmery’s diagnosis, they learned about a lab in New York at Columbia University that is dedicated to studying KIF1A and finding treatments and a cure as fast as they possibly can.
“Research is monumental,” shares Valerie, who says that the lab is not only looking for symptom medication, help with seizures, and temperature regulation, but they’re also working around the clock on researching a cure that “very realistically speaking could just be 5-10 years away.”
Valerie says that the potential cure is “a technology that is already here”, referencing something called CRISPR.
CRISPR is a “family of DNA sequences found in the genomes of prokaryotic organisms such as bacteria and archaea. These sequences are derived from DNA fragments of bacteriophages that had previously infected the prokaryote. They are used to detect and destroy DNA from similar bacteriophages during subsequent infections.” source
“It’s absolutely mind-blowing,” says Valerie with a hint of optimism. “This lab at Columbia University is looking for a lab to partner with that does CRISPR, and we need the funds to help them.”
Valerie has worked diligently to raise over $15,000 this year for KIF1A, which she says is just the beginning of their efforts to find a cure.
SWING FOR A CURE
Their next big venture is their most exciting yet and one the whole community is invited to be a part of.
On Friday, September 16th, 2022 at Sunset Landing Golf Course in Huntsville, the 1st annual “Swing for a Cure” golf tournament will be held with all funds raised going straight to KIF1A’s research efforts.
Interested participants will register with teams of four and play 18 holes in a scramble format. The fee to play is just $100/person ($400/team) and includes golf, breakfast, two drink tickets, lunch, and a t-shirt.
Valerie says that she hopes this will be an exciting day that holds promise for Emmery’s future and other individuals around the world with her diagnosis.
Many of the Morris’s friends and family have worked together to put this golf tournament into motion so quickly, and when asked what it means to her and her husband, Valerie says that it’s hard to put into words.
“We knew we had amazing friends and that we lived in a great community, but we never expected this kind of support,” she says tearfully. “To have all of your friends loving and caring for your children means everything.”
Valerie says that she hopes this golf tournament and subsequent fundraisers bring awareness to this disease so that they can continue raising donations to fund the necessary research.
“This is all going to turn her world around.”
To sign up a team, please click here to enter your information in the contact form, and Valerie will be in touch with payment information and the next steps. You are also welcome to email her here to sign up!
Quick Links for the Swing for a Cure Golf Tournament & Fundraiser
Want to sponsor a hole? Several more sponsors are needed! Click here for sponsorship options.
All donations are tax-deductible and will be donated to KIF1A.ORG, a 501(c)(3) a non-profit that works to accelerate the research for KAND. Click here to learn more about the non-profit.
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