Continued from the December Illuminator Newsletter article…
Marathon for Batten
Katie Lewis’ first time meeting a family impacted by Batten disease was this fall in a clothing boutique, THREAD, in Grandview, Ohio. Immediately, Katie’s energy and determination to do something was jumping off the page. She couldn’t believe the challenges that Batten children and families faced, so after a running hiatus, Katie was inspired to lace up her shoes again and start training to do something she knew she could do to help out; raise money running the Columbus Marathon. 26.2 miles. And for every mile, Katie and her friend, Michelle Poirier, ran with a different child’s name, face and wish in mind. Something our community can really be proud of is through sharing experiences about our children, we find common ground and create change in the world around us. To, the McCorkle family that day in THREAD for sharing your experience, to those of you reading this who responded to the call to dedicate a mile to your child, to Katie, Michelle and their support crew — we thank you. Your conversations amplify our voice. And we are so grateful to have you on our team.
Staten Island Bowl-a-thon
The NY Metro Chapter of the BDSRA has raised funds via a Bowl-a-thon for 17 years. Several Batten families are at the core of the event that is put on by the New York State Society of Certified Public Accountant’s Staten Island Chapter. The Bowl-a-thon has brought close to $300,000 to BDSRA. Among those involved in creating a successful event this year are Gerard and Vicky LoVerde, Greg and Maria Cicero, John Rissman, Fred and Janet Surrey, Gene and Edie Dockter, and an amazing group of family members, friends and colleagues. This year, the event was held at Rab’s Country Lanes with an impressive spread of raffle items generously donated by the organizers and sponsors of the event. The spirit of family is clearly a hallmark of the Bowl-a-thon, as everyone who enters the doors is welcomed into the fold as if they have been attending since the tradition began. The time and heartfelt energy put into the event is apparent and deeply appreciated.
A Fifth Season
Brightening the Landscape of Batten disease
Family Foundation, Noah’s Hope-Hope4Bridget, has brought people together in the Chicago-area for seven years for the fundraising event, A Fifth Season. The organizers of the event, Sara & David Kennicott and Jennifer & Tracy VanHoutan, make a big impact in one night with nearly 500 people in attendance!
This year, A Fifth Season celebrated the life of Bridget Kennicott (Sara & David’s daughter), advancements in science (Brineura), and the families that were part of the CLN2 clinical trial. Dr. Dave Jacoby of BioMarin provided an overview of the Brineura journey for those in attendance. The families connected to the event have lost three beloved children, Ethan Gahlbeck (age 10, 2015), Noah VanHoutan (age 11, 2016) and just this year, Bridget Kennicott (age 12, 2017). Laine VanHoutan continues to bravely battle Batten disease at age 11. The families shared a video of special moments with all four children here with us.
BDSRA is very grateful for Noah’s Hope-Hope4Bridget’s efforts as a long-time funding partner in both the areas of Research and Support. Thank you for organizing A Fifth Season to rally and educate the Chicago community and for being an inspiring force in this fight.
Battling Batten 5K Run & Family Walk
On November 12, 2017, volunteers, participants and donors came together at the beautiful Scioto Audubon Metropark for a fun morning of races. The event began with the Betz family as a walk in honor of their daughter Celia Betz and her legacy has continued to evolve over time. We work closely with Laura Hull, the Race Director, who gives so much of her time to lead this event. Laura shared what connects her to Batten disease and why she chooses to support the BDSRA community by donating all proceeds of the event.
“My friends, Jenni & Andy Betz, lost their daughter, Celia, to Batten approximately 6 years ago. As a mother, I put myself in her shoes and I can’t imagine the loss that she’s gone though. Looking at how her family has dealt with that loss and come together as a group in their grief to support other families and work towards a cure, meeting families, the BDSRA staff and people who spend their career and livelihood working to hep families who have lost a child inspires me at my core.”
Many things made this year a success!
- A fundraiser at The Hills Market in Worthington, Ohio the month prior to the race was filled to the brim with friends and supporters.
- Volunteers from Nationwide, friends and family members showed up early on race day to help on the courses, parking and registration.
- Incredible sponsors and families donated four tables full of items for the raffle.
- Everyone crossing the finish line had a smile on their face knowing they had contributed to a worthy cause.
We are grateful for everything that was contributed to this event, your gifts of time, donations, awareness and support. From the bottom of our heart, we thank you for being part of this special event and we look forward to seeing you again next year! Details on the 2018 race will be posted on the event Facebook page.
To all of our volunteers and funding partners, those recognized in this issue and many others who together create a bedrock of support for BDSRA year-round, you have left a mark on our heart. You remind us of the good in the world and you make us proud to be part of this community, working to make the future a brighter place for children with Batten disease.