This year, the Robert Packard Center for ALS Research at Johns Hopkins celebrates 25 years of work. The Packard Center is a place like no other, operating through a unique model that transcends institutional borders to share knowledge and fuel progress around the globe. And this model is working: Packard-funded research (in nine countries, 20 states, and 61 medical and research institutions) has supported 50% of the clinical trials for ALS in the last decade, and two FDA approved drugs.
A highly committed group within this community is the Packard Center Board of Governors. It is no surprise that the board members who support the Packard Center in its work echo the dedication and collaborative model of the center’s scientific network.
The board’s volunteers come from a variety of backgrounds and experiences including the fields of business, finance, law, and tech. They are people living with ALS, family and friends of those impacted by the disease, and community members dedicated to supporting innovative science and research. Many have been on the board since its founding, while others have recently joined its efforts after being drawn to volunteer roles in ALS with high impact.
The whole group meets twice a year to advance their work, with specialized committees meeting more frequently. They have access to an online resource library, curated and updated by the Packard Center staff, that enables board members to share current information and resources in real time as they work throughout the year to spread the word about the Packard Center and its most up-to-date research. At regional events throughout the year, board members engage with interested guests and prospective donors. They offer their expertise, personal experiences, and guidance to those looking to learn more about the Packard Center and its groundbreaking work and make referrals to the Packard Center staff for further engagement.
Board members keep abreast of the science and observe the Packard Center model by attending the center’s monthly principal investigator (PI) meetings. In these closed online meetings, two researchers (currently sponsored, or being considered to be sponsored) present their unpublished research for consideration and critique by the Packard Center cohort of researchers from around the globe. The board members may also attend the Packard Center Annual ALS Research Symposium, a three-day closed-door highly dynamic and collaborative scientific meeting of over 200 of the world’s leading scientists and clinicians.
Why do they choose to give their time and effort to the Packard Center? Board member Ed Rapp, former Caterpillar group president and a person living with ALS, states, “Years in industry taught me that great innovation comes from great collaboration. In looking for the most collaborative research model in ALS research to support, all roads led to The Robert Packard Center for ALS Research and Dr. Jeffrey Rothstein.”
Collaboration has been at the heart of the work of the Packard Center since its founding. Throughout its 25 years of work, the center has funded 179 total research projects. These projects are high-risk and high-reward and enable big ideas to move forward that might otherwise stall. In addition, the Packard Center’s open-sharing model means collaboration happens in real time — monthly meetings and its yearly symposium provide a venue for all Packard-associated researchers to share their unpublished work as it happens, enabling them to build on each other’s efforts without waiting for publication or other formal sharing modes.
The Packard Center is much more than a physical site in Baltimore. It is a network that spans the globe and includes more than 200 researchers. In fact, 70% of the grants awarded by the Packard Center are mandated for awards outside of Johns Hopkins, and in 2024, 13% of the research grants were issued internationally. In turn, the results of these grants inform the next researchers’ work, building a dynamic network that is constantly collaborating on its common goal and able to advance quickly because of the sharing of research, data, ideas, and tools.
The Board of Governors is working behind the scenes, as well as on the front lines, to support these efforts. Shelby Saer, ALS advocate and co-chair of the board, who along with her husband John (who served as co-chair years ago), recently made a multi-year lead gift in honor of the Packard Center’s 25th anniversary. She shared her family’s commitment, describing, “Having witnessed and battled alongside two generations of family members fighting this disease, the Packard Center stands as a beacon of hope. The progress made over the past 25 years in ALS research, with the Packard Center at the forefront of this effort, has been truly astounding, as well as gratifying for my family to be assisting in this journey.”
Topics: Faculty and Staff, Friends of Johns Hopkins Medicine, Johns Hopkins Medicine, Promote and Protect Health