A Westchester Doctor Leads the Way Against a Rare Tumor Disease

Photo courtesy of the Children’s Tumor Foundation

This doctor and Yonkers resident is on a mission to vanquish childhood tumors through her work on neurofibromatosis.

As president of the Children’s Tumor Foundation (CTF) since 2014, Dr. Annette Bakker is both the chief scientist and an innovative leader who is making a difference with a patient-centered approach to research and collaboration. The foundation works to improve the lives of those living with neurofibromatosis (NF), a rare group of genetic conditions that cause tumors to grow on nerves throughout the body.

The Yonkers resident is a Belgian-born expert in pharmaceutical/biotech research and holds a PhD in biochemistry/cell biology. We spoke with her about CTF and the team’s tireless resolve to combat NF.

How did you come to lead an organization like CTF?

I am a biochemist by training, and I have been in both academia and the biotech industry. What frustrated me was kind of the disconnect between the scientific discoveries and the clinical benefits, how little they actually translated into better treatments for patients. That is what attracted me to look for an opportunity where I might be able to at least question, and maybe fix, some of the broken systems.

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What would you like people to know about NF?

Neurofibromatosis is a genetic disorder and there are four million people living with this condition. Tumors grow on nerves; cells divide that should not divide, and the best way to describe it is that you never know what is going to happen. It can lead to deafness, blindness, disfigurement, and can be deadly because sometimes these tumors can even turn malignant. Working on NF is such an honor for me because these patients have a courage and a will to live that is absolutely astonishing, despite all the challenges they have.

In your time at the foundation, what have been some of your successes?

Something we have been really good at is dissecting system problems and finding solutions for them. For example, we have created a scientific research collaborative — a global initiative that allows us to strategize together. Also, there is a whole new way of doing clinical trials to evaluate drugs faster. It is called the platform trial (and it is exactly what they did during COVID); we were already developing the platform trials.

What is your philosophy about facilitating progress when it comes to rare diseases?

I think the infrastructure that we have built for NF is completely applicable for any rare disease. What you need to realize is that there are specific challenges to rare diseases. There are few patients, and you may need to work with many different centers. The other characteristic is that very often the cases are progressive, manifest differently, and can affect multiple organs, making the clinical protocols more complex.

Dr. Annette Bakker with former NF Ambassadors Frankie and Olyviah Moriguchi at the 2018 NF Forum
Dr. Annette Bakker with former neurofibromatosis Ambassadors Frankie and Olyviah Moriguchi at the 2018 NF Forum. Photo courtesy of the Children’s Tumor Foundation.

In a nonprofit, we can bring value and play a key role, because we are really connected to the patients, we know the clinicians, and we are only driven to bring treatments to patients and share their same sense of urgency. We are like Switzerland, functioning as an honest broker who can invest in the mechanics of making sure that if a company has a drug, it is as easy as possible to bring that drug — from the moment they discover it — all the way to the clinic.

I definitely have hope that we will end NF within the next 10 years.

“Working on NF is such an honor for me because these patients have a courage and a will to live that is absolutely astonishing, despite all the challenges they have.”
–Dr. Annette Bakker, Children’s Tumor Foundation

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