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The Official Walk Locations:
Boone, NC, USA 11:00 am
Farmington, AR 10:00 am
Long Island, NY, USA 11:00 am
Rowayton, CT, USA 10:00 am
Woodbury, MN, USA 11:00 am
Join us on September 14, 2019 to support KAT6A families in our largest fundraising and awareness event of the year!
Participate in an Official Walk:
Register if you will be attending a walk. Registration is $10 for adults and children are free. Registration includes a "KAT6A Walk to Find a Way" t-shirt and refreshments.
Join the team that you support.
Donate.
Share the fundraiser with your friends on social media or by email.
REGISTRATION ENDS AUGUST 14th. You can still attend an official walk after registration ends, but we cannot guarantee you a t-shirt.
Other Ways to Get Involved:
Donate.
If you cannot attend one of our official walk locations consider creating an individual fundraiser and hosting your own virtual walk that day in your community. A virtual walk could be as simple as a walk around your neighborhood with your family wearing KAT6A apparel or holding signs to bring awareness.
Share this page with your friends and family to help us meet our fundraising goal.
Support Our Mission:
Our mission is to support families coping with KAT6A syndrome. Since we are just beginning to know about the complexities of KAT6A, it is imperative that we raise funds to further research that will inform families and identify treatments that will improve the health and quality of life for those affected. It is equally important that we increase awareness and identify more individuals with KAT6A so that researchers give our community greater consideration.
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.
Thank you again for your generous support of the KAT6A kids!
Learn more about us at www.kat6a.org.
If you need help setting up a team page, please contact Aimee Reitzen at kat6aimee@gmail.com.