Robert Packard Center for ALS Research at Johns Hopkins

10/10/2025

We had a fantastic week at the Northeast ALS Consortium (NEALS) Annual Meeting! It was inspiring to hear presentations from Packard-funded investigators — Dr. John Landers, Dr. Claire Cleveland, and Dr. Alyssa Coyne — and to connect with our collaborative partners, including Answer ALS ALS, United, The ALS Association and Project ALS

Packard Center Development Director Meg Whiteford attended the Clinical Research Learning Institute (CRLI). The CRLI is a two-day, in-person program that empowers participants to become ALS Research Ambassadors, equipped to influence and improve the ALS research landscape.

Packard Center Director, Dr. Jeffrey Rothstein, moderated two scientific sessions, and our team presented a poster celebrating 25 years of funding global, collaborative pre-clinical research.

The NEALS Annual Meeting remains a vital forum for advancing clinical and scientific research through collaboration and shared discovery.

10/08/2025

We are excited to be participating in the 2025 Northeast ALS Consortium (NEALS) Annual Meeting. This is a great way to hear the latest in ALS research and clinical trials as well and collaborate with partner organizations.

08/13/2025

Congratulations on this exciting partnership. Champion Insights will work to understand why high-performing athletes and members of the military face a higher rate of developing ALS. We look forward to following this promising new study.

Announcing Champion Insights: A new remote-participation study to understand why high-performing athletes and military service members face higher ALS rates.

Answer ALS, ALS TDI, and Augie's Quest have joined forces to launch Champion Insights.

The study uses simple at home participation and a single blood draw, with data flowing into the Neuromine Data Portal to connect genetics, metabolism, movement, history, and outcomes. The goal of the openly shared data is to surface druggable targets and speed therapeutic discovery.

New Orleans Saints great and ALS advocate Steve Gleason will be participant #1.

Learn more 👉 https://www.answerals.org/2025/08/13/united-for-answers-leading-als-organizations-announce-champion-insights-to-unlock-why-athletes-and-military-members-face-higher-als-risk/

08/13/2025

We are looking forward to this fun event with our partners Coast to Coast for ALS. Join them on Saturday, August 23 in Annapolis, MD

06/26/2025

Congratulations to Packard-funded researcher, Dr. Johnathan Cooper-Knock (The University of Sheffield), one of eight outstanding scientists to receive the 2025 Lister Award in recognition of his pioneering MND research.

Read more: https://www.sheffield.ac.uk/news/sheffield-scientist-awarded-prestigious-prize-groundbreaking-mnd-research

06/25/2025

We are proud to announce the launch of the Longitude Prize on ALS, a global initiative supported by the Packard Center in collaboration with Answer ALS and other leading ALS and MND organizations around the world.

The Longitude Prize on ALS is a £7.5 million (~$10 million USD) international program to incentivize the use of AI-based approaches to transform drug discovery for the treatment of amyotrophic lateral sclerosis (ALS).

The five-year Prize will see global multidisciplinary teams compete in a three-phased program to identify, prioritize and validate high-potential drug targets for ALS. To drive discovery, the Prize has brought together a range of ALS datasets, working with data holders worldwide, and participants will be provided with access to this data, funding, compute, technical expertise and a range of additional support and partnership opportunities.

For more information: https://bit.ly/43ZiVlT

06/04/2025

This year, the Robert Packard Center for ALS Research at Johns Hopkins celebrates 25 years of work. 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.

The Packard Center 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.

Shelby Saer, ALS advocate and co-chair of the board, said, "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."

Read more: https://giving.jhu.edu/story/packard-center-25-years-als-research

06/04/2025

We are pleased to be participating in 2025. Encals is the European network to cure ALS. This three day meeting includes over 1,000 participants, including many Packard-funded investigators and advisors.

06/02/2025

This past weekend, Dr. Jeff Rothstein, founder of the Packard Center, appeared on MASN Orioles "O's Xtra" as the Baltimore Orioles honored Lou Gehrig Day. We're grateful for the team's continued commitment to raising awareness and supporting critical ALS research funding.

Check out Dr. Rothstein's pre-game interview: https://video.masnsports.com/video/Dr.%20Jeffrey%20Rothstein%20discusses%20ALS%20research%20on%20Lou%20Gehrig%20Day/7684

06/02/2025

Thank you to the Baltimore Orioles for hosting us this weekend for their annual Lou Gehrig Day. We appreciate their unwavering support that dates back to our founding, 25 years ago.

05/22/2025

THERE IS STILL TIME TO REGISTER: Join the ALS Network next educational webinar, "ASK ME: Recap of the 2025 Packard Center Annual ALS Research Symposium" on Thursday, May 22 at 5:00 PM PDT/8:00 PM EST.

Christine Vande Velde, PhD, Scientific Director, Robert Packard Center for ALS Research at Johns Hopkins will be joining to provide an update on the Center's recent ALS Research Symposium.

RSVP today at https://ow.ly/y3Io50VOarb

05/21/2025

Great piece in Forbes on our friend John Driskell Hopkins. Driskell's organization, Hop On A Cure, serves as a funding partner and Packard Center collaborator.

“I want them to know we’ve done everything we can and the only way to fix this is to use the platform we’ve been given to make our own impact and raise money for research to fix it. The only way any of us get out of this is finding a way to heal motor neurons. And when we do, we’ll find a way to beat ALS, Parkinson’s, Alzheimer’s, and several others that fall into that motor neuron category.”

“I want [my daughters] to know we’ve done everything we can and the only way to fix this is to use the platform we’ve been given to make our own impact and raise money for research to fix it.”

Thank you Forbes and Pam Windsor. To read the full exclusive feature on John Driskell Hopkins, visit: https://www.forbes.com/sites/pamwindsor/2025/05/19/zac-brown-bands-john-driskell-hopkins-battles-als-with-strength-courage--hope-for-a-cure/