Join us for the second annual KAT6A Walk to Find a Way on September 14, 2019 at 11:00 am at Cedar Creek Park in Wantagh, NY in support of Will. We will meet at the covered picnic area at Field 6, next to the small playground.
This year, the KAT6A Foundation will be providing t-shirts and refreshments for registrants. Adult tickets cost $10 and children are Free. I hope that you will register on the main event page and join our team for a fun day. If you can help us fundraise, it will be greatly appreciated. Register here: https://www.mightycause.com/event/Kat6afoundationwalk2019
**REGISTRATION CLOSED 8/14!**
The KAT6A community has grown greatly this year - both in the number of known families as well as the what we'd like to provide for those families. As of today, we have over 220 families in the global KAT6A community!
The Foundation has had a great year. In January 2019, in partnership with the National Organization for Rare Disease (NORD), we launched the KAT6A Patient Registry to collect and maintain patient information in preparation for any eventual drug trial. In February 2019, we hosted the second annual KAT6A Clinic at the Kennedy Krieger Institute at Johns Hopkins University. Four researchers presented their work on KAT6A and their future interests, and over 40 families made the trip to Baltimore. In July, we submitted a Letter of Interest to the Chan-Zuckerberg Foundation for a grant opportunity to further build out the KAT6A Research network, hoping to be invited to submit a full grant proposal.
Your donation goes directly into the KAT6A Foundation, a 501(c)(3) organization supporting families and funding efforts to identify therapies for the KAT6A 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, and (3) funding preliminary research into the molecular affects of the KAT6A genetic mutation.
We look to the 2019 KAT6A Walk to Find a Way to raise funding to sustain and build on these projects into 2020.
We are continuing to see Will make progress since starting a mitochondrial treatment two years ago and from following a rigorous program of physical, occupational, speech and feeding therapy. Unfortunately there are many questions that remain about the future regarding potential health issues and developmental problems. That is why it is so critical for us to continue funding research into this extremely rare disorder. If you'd like to learn more, I'd be happy to share greater details with you or you can visit www.kat6a.org.
We will also celebrate Will’s baby brother, Matthew’s, 1st birthday in the park after the walk.
We are asking in lieu of birthday gifts to make a donation to this event.
Join us for lunch and birthday cake provided by the Reitzens.
There will be plenty of fun to be had playing games on the field and on the playground!
Thank you for your support, love and generosity.
Love,
The Reitzens
KAT6A Walk to Find a Way 2018