Earlier this week, BDSRA Foundation officially announced the hiring of Dr. Ineka Whiteman, who will serve as the organization’s Head of Research & Medical Affairs.
Learn more about Ineka below including her background, job duties, and more!
Tell us about your background in science and research, and how that led you to get involved with Batten disease research.
From my first introduction to the brain in a high school biology class, I have been insatiably curious about the mysterious and exquisite workings of the human brain. It has been a pretty easy career choice since then! I studied for my undergraduate science degree at the University of Oxford, UK, majoring in neuroscience, and completed my Honours and Ph.D. (Medicine) at the University of Sydney, Australia. My research focused on the cell and molecular biology of Alzheimer’s disease and other dementias. My love for scientific communication soon led me to the biotech industry, where I worked in senior medical affairs roles in one of the world’s leading biopharmaceutical companies.
While I was on maternity leave with my second child in 2016, a friend’s daughter was diagnosed with CLN2 disease. At that point, I had never heard of Batten disease, but I vividly remember the moment I first searched it up online. The first few sentences I read literally took my breath away. I reached out to my friend to see what I could do to help – and quickly discovered a deep interest in Batten disease and a desire to help affected children and families just like my friend. Fast forward to now, and what can I say? My passion for this field has only grown! I’ve been involved for over four years now, leading Research and Medical Affairs for BDSRA Australia and more recently supporting the Beyond Batten Disease Foundation, too. I feel genuinely blessed to work alongside this incredible community every day. Although this role naturally comes with great heartache and loss, it is profoundly rewarding to be able to support and work together with so many inspirational families and our community of researchers, clinicians, and industry and advocacy partners.
As BDSRA’s Head of Research & Medical Affairs, what will your main duties be?
A key aspect of the role will be overseeing the Foundation’s research investment and grant process, to ensure we are fostering and supporting the best possible research into Batten disease both in the US and internationally.
The role also involves exploring and identifying opportunities for new research avenues and partnerships, and building authentic, collaborative relationships with key groups – our families, researchers, clinicians, advocacy, and industry partners.
Other duties include working together with industry partners in relation to Batten disease research pipelines and clinical program opportunities, maintaining current knowledge of the scientific and clinical research landscape through ongoing literature reviews, research meetings, and conference attendance – and communicating relevant developments to our community. In addition, I’ll be responsible for the Foundation’s scientific education initiatives including science-related webinars, news articles, website updates, and other resources.
What are some of the ways you hope to translate Batten research and communicate it with families in the Batten community?
I will provide research updates and information to our community through a variety of channels including social media posts, The Illuminator newsletter articles, webinars, and in person at the Annual Family Conference (see you all in Texas!). And of course, I’m always up for meeting our families and having a chat, so please feel free to reach out and introduce yourself, and ask any questions!
Tell us a fun fact(s) about yourself!
My family and I live in a zoo — of sorts! My children have definitely inherited my love of all creatures great and small, so we have quite the menagerie at home — pet lizards, turtles, frogs, exotic fish, chickens, beehives, two dachshunds (I think you call them wiener dogs in the U.S.!) and a family of wild kangaroos that visit us daily. Life is never dull!
