This is year 4 for the KARES Foundation’s virtual 5K and fundraiser, and another year of Jenna’s Journey.
Local friends, if you're interested, we'll be doing a 1-mile walk in Memorial Park on the morning of Saturday 9/27. If you register with our team you'll get this year's amazing t-shirt! You're also welcome just come out to show your support and help raise awareness.
Jenna’s story is similar to some of the other affected kids: she achieved many milestones late, had delayed speech and motor development, and saw doctors in an array of disciplines until she received the genetic diagnosis of a KDM5C variant at age 6.
KDM5C is a gene that affects other genes within our bodies, and when it does not function properly, this can cause developmental, cognitive, and behavioral issues that can be seen on a very wide spectrum, so each person's challenges may be different. KDM5C is known to cause ADHD, autism, speech impairment, developmental and motor delays, anxiety, epilepsy, gastrointestinal issues and other characteristics.
Jenna is 10 now, and she is still one of the happiest kids on the planet. She acknowledges that she has disabilities, some hidden, some obvious, but she has never let that stop her from doing anything she sets her mind to. She performed beyond anyone’s expectations in her redo of 3rd grade and was even selected to be a helper on her school’s news crew for next year. She received awards for conduct and for growth in both reading and math. She receives various services through her IEP at school and is a very hard worker despite challenges with ADHD and reading comprehension. She is a green belt in Tae Kwon Do, and loves swimming, Minecraft, and spending time with friends, family, and her extended family at camp.
The KDM5C gene is x-linked, meaning that it’s expressed from the x chromosome, of which females have 2 and males have 1. Broadly, this suggests that KDM5C symptoms can be more pronounced in males than females, but if Jenna chooses to have children, she has a good chance of passing on the variant to her children, especially if she has a boy. Throughout her life, Jenna will see many more doctors and will undergo different cognitive and medical tests, and will be fitted for braces, special shoes, and strollers, and is at risk of developing additional physical issues.
The mission of the KARES Foundation is to improve the lives of those affected by KDM5C genetic variances through advocacy, research, education and support for affected individuals and families. We’re asking again this year for your support to help us raise awareness and funds to further research into causes, therapies, and a better understanding of the variants to help shape a healthier future for Jenna and our KARES community. The KARES Foundation has had the opportunity to fund two successful research grants and convened the first official Family and Science Conference in 2024, where we were able to hear about research findings first hand and meet other families in person. Jenna still talks about the other kids she met that are like her. It's through your contributions that these things are possible. Thank you!
