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Jan 21
2022

Boyce Joins Packard as Executive Director

Packard Center News
Danielle Boyce, DPA, MPH joins Packard Center with over twenty years of research and project management experience.

The Robert Packard Center for ALS Research at Johns Hopkins is pleased to announce the recent appointment of Danielle Boyce, DPA, MPH as the new Executive Director for the Center and the Answer ALS Research Project and Assistant Professor of Neurology.  Danielle brings 20-years of experience to the Packard Center as a researcher, patient advocate, public speaker and author.

 “Danielle is a long-term and well-versed advocate for ALS patients and research,” said Jeffrey Rothstein, M.D., Ph.D., Founder and Director of the Robert Packard Center. “Her background in data and project management along with her passionate drive for the advancement of research make her an ideal new member and leader for the Packard and Answer teams.”

With a background in epidemiology and biostatistics, Danielle spent 15 years as a research data analyst and statistician at Johns Hopkins University. She thought her career path was set until her son, Charlie, was born with a rare form of epilepsy. 

“I realized that my data science background could do things for advocacy and research to help to advance medical discoveries,” said Boyce. “I went back to school to get my doctorate in public administration, which focused on organizational resilience and the role of the citizen, patient and caregiver in basic research.”

Prompted to action, Danielle coordinated with the Food and Drug Administration, industry groups and the Patient-Centered Outcomes Research Institute (PCORI). Through these collaborations, she  advocated for cross-cutting research that addressed the needs of patients. 

While Danielle began her work with the epilepsy community, she has brought this passion to the ALS community when she began volunteering with Answer ALS and other ALS organizations in 2020. Through these endeavors, she has leveraged her academic and professional experience to navigate bureaucracy to help patients and researchers, as well as government and industry officials work together toward a common goal.

“Danielle is uniquely qualified for this critical leadership position and will be a great addition to the Packard and Answer ALS team,” said Ed Rapp, ALS patient and advocate, as well as Chair of the Answer ALS Advisory Board. “She is committed to our journey to make a difference in what is a tough disease.”

According to Boyce, patients are interested in basic science, not just clinical trials. This is important because patients can support scientists in their research to address outcomes that matter to their community.

“I am very pleased that the Packard Center has been able to replace the virtually irreplaceable Dr. Emily Baxi with a talent like Danielle Boyce,” said Ralph Terkowitz, co-chair of the Packard Center Board of Governors.  “Having observed Danielle's work on the Answer ALS project, I know that she will be an asset for the Packard Center. I look forward to working with her.”

Danielle holds a doctoral degree in public administration from West Chester University. She also holds a master of public health with a focus on epidemiology from SUNY Albany and a bachelor of arts in political science from Binghamton University. She has co-authored more than 40 peer-reviewed scholarly articles and has accepted more than 25 invitations to present at scientific conferences and patient advocacy organization meetings. She has also led a research team that included prominent scientists and patient advocates, which received the “People’s Choice” poster award at the 32nd international symposium on ALS/MND, held virtually in December 2021.

Danielle is also the author of a children’s book, “Charlie’s Teacher,” which depicts the challenges that the siblings of children with a rare disease experience. This work is used in child life departments in children’s hospitals throughout the United States. 

“There are special challenges that patients want addressed, and Packard and Answer ALS are working in those areas,” said Boyce. “I am so glad that I can play a role in expediting discoveries in basic science.”

 

~Stacy Kish

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