Ball State University's Department of Biology has received a significant donation of $20,000 from the Todd Siebert Memorial Foundation. The foundation, aimed at advancing research in C9ORF72-linked Amyotrophic Lateral Sclerosis (ALS), was established in honor of Todd Siebert, who lost his battle with ALS in 2021 at the age of 51. The generous grant marks the formation of the Smaldino ALS/FTD Research Project Fund at the Ball State University Foundation.

Dr. Philip Smaldino, associate professor of cell biology at Ball State and the primary investigator leading the C9ORF72 ALS research project, expressed his gratitude for the foundation's support during its visit to campus on Dec. 7, 2023. The foundation was represented by Tina Siebert, widow of Todd Siebert, and Erin Eckerle, president of the Todd Siebert Memorial Foundation.

“I was honored and inspired by the visit from Tina and Erin,” said Dr. Smaldino. “The Siebert Foundation has been working tirelessly since 2021 to raise awareness and funds to support Indiana families affected by ALS.”

The funds provided by the Todd Siebert Memorial Foundation will empower Dr. Smaldino and his team to develop innovative strategies for therapeutic targeting of DHX36, a key enzyme associated with ALS. The ultimate goal is to contribute to the understanding and treatment of this devastating neurodegenerative disease, for which there is currently no cure.

The Todd Siebert Memorial Foundation has been dedicated to raising awareness and funds to support those affected by ALS, as well as contributing to local ALS research and clinical efforts. The donation will significantly contribute to training and supporting Ball State students involved in cutting-edge research on ALS.

According to Dr. Smaldino, who has been studying C9ORF72-linked ALS since 2016, lowering DHX36 levels in cell models and in live mice has shown promising results in reducing toxic protein levels associated with this sub-type of ALS. The foundation’s donation will enable further exploration of this novel therapeutic strategy.

More than 30 Ball State students have been trained in Dr. Smaldino’s lab on various ALS projects, with many transitioning to careers in research and medicine. The donation from the Todd Siebert Memorial Foundation will provide valuable resources for the eight current students working in the lab—three master’s students and five undergraduates—that will contribute to the understanding and potential treatment of ALS, and for future students to continue this research.

“Working in the lab is not only about getting into graduate school or medical school, getting a job, or even about discovering interesting things about cellular life,” said Dr. Smaldino. “I try to remind my students that what we are doing in the lab may someday help real people. The visit with Tina and Erin brought that idea to light in ways that my words could never have, so I am thankful to the Siebert Foundation for providing that to my students and me.”

For more information on the Todd Siebert Memorial Foundation, contact bigtouting@gmail.com or visit its website.