Gavin and Mason are 9 year old twins who were recently diagnosed with a rare genetic condition called KDM5C, which is a gene variant so uncommon that fewer than 350 people world wide have been identified.
It has been a long journey to say the least, countless appointments, lots of testing and seeing many specialists… two steps forward and one step back as another issue presents.
There is no cure for KDM5C but we now have a “community” that we can connect with to discuss the many aspects of the disorder. Having the ability to ask other families what has been more effective for them when dealing with the multitude of issues that go along with this defect brings comfort to us.
Research is a very important part of trying to identify specific variants of this disease and hopefully some day make it possible to “repair” the damaged gene (a dream come true). We understand the importance of research. We have formed a fundraising team for the KARES Virtual 5K for KDM5C. The mission of the KARES Foundation is to improve the lives of those affected by KDM5C-related disorders through advocacy, research, education, & support for individuals and families. Join our team and/or donate today! We look forward to seeing your in person (or remotely) on September 27th at 9:00 am behind the International Motel at the Waterfront Walkway.
