The KBG Logo is free to use for web and print, proper attribution to the KBG Foundation is requested. To download: right click and use the save as option. Contact the KBG Foundation for other graphic and color options.
The KBG Awareness Ribbon is free to use for web and print, proper attribution to the KBG Foundation is requested. To download: right click and use the save as option. Contact the KBG Foundation for other graphic options.
Alaina’s Fun Run partners with YMCA in Ohio
BALTIMORE, Maryland, August 1st, 2017 - THIS is KBG Syndrome Awareness in Action!
The KBG Foundation is pleased to be partnering with the Massillon Family YMCA in an effort to raise awareness for KBG Syndrome and related genetic disorders. This event also serves as the inaugural 5k and Fun Run on behalf of the Foundation. The YMCA sponsored Tiger Trot - Run for a Reason - will be held Saturday, September 9th. This unique run, also known as Alaina’s Fun Run for KBG Awareness is inspired by Alaina Zehnder’s journey with KBG Syndrome and focuses less on speed and more on making a positive impact for others affected by KBG Syndrome - patients, caregivers, friends and community.
Alaina’s journey started at birth and, along the way, she faced continuous obstacles. These included digestive complications, ear tubes, cognitive delay, a hole in her heart and, now, seizures. All of these struggles (and more) led to testing, more testing and, finally, a diagnosis - an incredibly rare disease - KBG Syndrome. It was devastating and enlightening at the same time. Luckily, she’s made some great progress in the last few years.
Alaina’s Mom, Kylie, stated; “While it’s difficult to face a rare disease we are grateful to know there are others out there who are dealing with similar issues. Our family maintains that children like her are ...'fearfully and wonderfully made'.* They are perfect. They are the reason why this 5k is happening.” She continued, ”We are humbled by the outpouring of support for our lovely Princess. The community has rallied around her to show her acceptance and love, it’s truly everything beautiful in this world, all because of our little girl. In her honor we invite you to wear your princess attire and have FUN!”
This event, inspired by Alaina and hosted by Massillon YMCA, is KBG Syndrome awareness in action!
WHAT: Run for a Reason
WHEN: Saturday, September 9th, 2017
WHERE: Massillon Family YMCA
131 Tremont Ave SE
Massillon, OH 44646
TIME: 8:30-9:30am: Registration/Pick-Up
10:00am: 5k Run & Walk
Individual Registration: $25
Family (2+) Registration: $50
To pre-register for Run for a Reason and order a t-shirt visit http://www.weststarky.org/alaina2017
When you register, please know you'll need to set up an account through the YMCA website and then submit the registration.
Please select the "Massillon Family YMCA" location from the drop-down menu. You can choose the level of your participation with the YMCA but if you want to only register for the 5k and not any other programs, please choose "Program Participant" and go from there!
ABOUT THE KBG FOUNDATION
The KBG Foundation is an international nonprofit affiliate organization, dedicated to providing support, assisting in research programs and advocating to raise awareness about the syndrome.
ABOUT MASSILLON YMCA
YMCA of Western Stark County is a 501(c)(3) nonprofit serving to strengthen community by nurturing the potential of kids, promoting healthy living for all and fostering and social responsibility.
Press Contact: Kylie Zehnder, KBG Foundation
Phone: (330) 418-8146
Massillon Family YMCA
Phone: (330) 837-5116