Newsroom Archives: News

Tyler Pershing Allman

April 9, 2001 – January 21, 2018

Our community lost a super hero when Tyler Allman passed away on January 21, 2018. The Allman family and the Team Tyler community have been committed BBDF partners and our hearts and condolences go out to them. You can view their family story and donate in memory of Tyler at tylerallman.com.

“Surrounded by his parents and brother, Tyler peacefully entered the Kingdom of Heaven on January 21, 2018… Our son Tyler brought more inspiration in his 16 years than most do in a lifetime. Tyler was born with Juvenile Batten Disease but didn’t show signs of the terminal, neurodegenerative disease until he was 8 years old. Tyler loved every sport and was born a natural athlete like his dad. Tyler played t-ball until he began to lose his fine and gross motor skills, his vision, and suffered from seizures and eventually was no longer able to walk or talk. His favorite team was the Cubs and there was always a pitching machine or a batting tee in our backyard. Ty loved getting up early as a 6-year-old to go golfing with his dad or hitting golf balls in the woods behind our home. He loved the adventure of riding his dirt bike so far out that we couldn’t see him, but we were always thankful for his return.” 

READ THE FULL OBITUARY HERE

Robert Price hosted a golf tournament at Reedy Creek Golf Course in Four Oaks, NC that raised close to $10,000 for Batten research! We are so grateful to Robert and all who participated and sponsored this event. Events like these move us closer to our goal of funding the treatment that is now in sight for Batten disease!

We’re so grateful to Weston Ezell and his friend, John, for asking for donations to BBDF in lieu of gifts for their birthdays! Lemonade stands, bake sales, and other fundraisers, such as Weston and John’s, support Be The Change, a component of The Be Project, which is BBDF’s campaign to raise $6 million in 24 months to fund the treatment that is now in sight for Batten disease! Weston’s effort was published in Life in the Heights magazine in November.

The Be Project is Beyond Batten Disease Foundation’s 24-month campaign to raise $6 million to fund the treatment discovered by BBDF-funded research. We are thrilled to have passed the halfway point and have raised $3.3 million! Read our full November newsletter here.

The BBDF Youth Leadership Committee has been hard at work on their BUZZ campaign! The committee places swarms of cut-out bees in the yards of unsuspecting Austin residents. In order to have them removed, a donation is encouraged. If you’d like to make a donation to their campaign, you can do so HERE.

We are so grateful for the incredibly generous donation made to Beyond Batten Disease Foundation by the Admirals Club of Austin!