Join Will's Warriors for KATwalk 2020!

*Join us October 3rd in Long Beach*

We will be walking on October 3rd at 11:00 am on the boardwalk in Long Beach, NY.  We will meet at National Blvd at 10:45 am.  Wear a KAT6A t-shirt if you have one and be sure to bring a mask.  Please reach out to Aimee or Jeff if you plan on walking with us. 

If you can’t join us in person we hope you can go on a walk or run that weekend to show your support for individuals living with KAT6A syndrome. 

Update on Will: This year has been a challenge for everyone and this was no different for Will.  We saw some regression in skills that he worked so hard to achieve, but we are hopeful that with in person therapies resuming that we will see more improvement.  Will continues to be the hardest working person we know as he follows a rigorous therapy schedule of physical therapy, occupational therapy and speech therapy.  He also gets equine assisted therapy on Sundays at Horseability, which is truly his happy place.  Unfortunately Will's music therapy has been put on hold, but Jeff has been learning guitar to help support him since he connects so well with music.  

Will now uses an Augmentative and Alternative Communication device, which we call his “talker.” With his talker he is able to make requests and express his feelings. We are so happy to have a window into his mind now and can’t wait to hear more from him as he develops expressive language using this software.  We are so fortunate that we can provide Will with everything he needs to reach his full potential. 

Your donations help advance research into this very rare disorder and also funds Empowered grants.  Empowered grants provide AAC devices to kids like Will who otherwise would not have access to them. The gift of communication is truly life changing for KAT6A families.  Funding research is absolutely critical for our families. In order to manage our childrens’ health problems, we must learn more about this disorder's progression and how it affects all organ systems.  Thank you for supporting us on this journey with our beautiful warrior, Will. 

How can you support our team?
Donate!
Your donation goes directly to the KAT6A Foundation, a 501(c)(3) organization supporting families and funding efforts to identify therapies for the KAT6A/B Disorder. The primary uses of the Foundation's funding are (1) bringing families and researchers together at the annual KAT6A clinic at Johns Hopkins University, (2) sustaining and expanding the patient registry database to support potential drug trials, (3) funding preliminary research into the molecular affects of the KAT6A and KAT6B genetic mutations, and (4) funding the Empowered grants that provide assistive equipment and technology to our families.

Join our team and share this fundraising page with your friends and family!