June 19, 2023 | Press Release

GAHANNA, Ohio – The Batten Disease Support, Research, & Advocacy (BDSRA) Foundation is pleased to announce the hiring of Dr. Ineka Whiteman, who will serve as the Head of Research & Medical Affairs.

In this role, Dr. Whiteman will oversee the Foundation’s research investment and grant process for all Batten disease CLN types to ensure the organization fosters and supports the best possible research into Batten disease in the United States and internationally. Dr. Whiteman will also be exploring and identifying opportunities for new research avenues and partnerships and working with industry partners on research pipelines and clinical program opportunities.

“Since the strategic plan was created in 2018, it was clear the BDSRA Foundation community wanted a science officer,” BDSRA Foundation President & CEO Amy Fenton Parker said. “Through the generosity of our family foundations, I am pleased to announce that Dr. Ineka Whiteman is joining the BDSRA Foundation team. Ineka has worked for BDSRA Australia for the past four years. She will continue to work for them and for us, and we are so excited to have her.”

Dr. Whiteman will attend this year’s BDSRA Annual Family Conference, July 14-16, in Denton, Texas, where she’ll help organize and lead the research sessions alongside fellow Batten researchers and clinicians.

“I do feel genuinely blessed to be working alongside this incredible community every day,” Dr. Whiteman said. “I’m so excited to meet everyone in Texas and Give Batten the Boot!”

The Foundation’s 2018 strategic plan included insight and a path for bringing a science officer on BDSRA’s staff to drive the essential commitment to pursue treatment and a cure for all forms of Batten disease. The plan also expressed the need for a research strategy, driven by a strong and informed leader such as a science officer, for the organization to become a leader in research within the Batten ecosystem.

Dr. Whiteman completed her undergraduate degree through combined studies at the University of Oxford (United Kingdom) and the University of Sydney (Australia) and was awarded her doctorate from the University of Sydney. Prior to leading BDSRA Australia’s Research and Medical Affairs, her research focused on the cell and molecular biology of Alzheimer’s disease and other dementias. Dr. Whiteman’s love for scientific communication then led her to the biotech industry, where she worked in senior medical affairs roles in one of the world’s leading biopharmaceutical companies.

She was first introduced to Batten disease while on maternity leave in 2016 when her friend’s daughter was diagnosed with CLN2 Batten disease. Dr. Whiteman reached out to her friend to see what she could do to help – and quickly discovered a deep interest in Batten disease and a desire to help affected children and families just like her friend.

Founded in 1987, BDSRA Foundation is invested in the pursuit of knowledge about all forms of Batten disease by connecting with industry partners, researchers, and clinicians; providing families with resources to care for themselves and their families; and advocating for legislative support at the local, state, and federal levels.

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