Robert Packard Center for ALS Research at Johns Hopkins

11/13/2025

Last night we welcomed fifty donors, researchers, Packard Center supporters and the family of Robert Packard to an event in San Francisco to help commemorate 25 years of collaboration and progress. It was a wonderful night of reflection and connection with those instrumental in the Center's founding.

11/06/2025

Congratulations Answer ALS on this incredible accomplishment. We are proud to be part of this amazing team committed to the goal of

11/03/2025

We spent the day at the 15th Annual Les Turner ALS Foundation ALS Symposium in Chicago. Packard Center Scientific Director, Dr. Christine Vande Velde presented her research on stress granules in ALS/FTD, Packard Center advisors Dr. Don Cleveland and Evangelos Kiskinis spoke as well as Packard-funded researcher Adrian Isaacs. It was an excellent meeting highlighting the latest in research and collaboration.

10/28/2025

The Robert Packard Center for ALS Research at Johns Hopkins and ALS United are pleased to announce a collaboration to jointly fund preclinical basic science research into als. This partnership reflects both organizations' commitment to accelerating breakthrough discoveries that will advance understanding of ALS and bring hope to those affected by the disease.

"We are excited to partner with ALS United on co-funding this important research," said Christine Vande Velde, Packard Center Scientific Director. "Collaboration, both within the lab and amongst like-minded ALS organizations, is a cornerstone of the Packard Center. This work will advance our collective missions to change the course of this disease by engaging in breakthrough research that advances our fundamental understanding of ALS. We hope this partnership will serve as a model for future collaborative funding efforts in the ALS research community."

Read more: https://packardcenter.org/robert-packard-center-for-als-research-and-als-united-announce-joint-research-funding-partnership/

10/17/2025

We’re excited to share a special opportunity from our community partner, Hop On A Cure! If you are unfamiliar, Hop On A Cure was founded by John Driskell Hopkins of Zac Brown Band with the mission to raise awareness and fund research to cure ALS.

October 18th, 2025, they will host Harmony for Hope: Defeating ALS. Harmony for Hope is an intimate singer-songwriter concert with a lineup featuring top talents from the industry. This event brings together fellow musicians with the mission of raising awareness and funds to end ALS.

Thanks to the generosity of Volume.com, Harmony for Hope will be streamed for free to all PALS, CALS, and community partners, making this event accessible to everyone. This is a wonderful chance to experience an evening of music, hope, and community from wherever you are.

Harmony for Hope will feature an unforgettable moment - John Driskell Hopkins of Zac Brown Band will perform his unreleased song, “Jesus & I,” live for the first time. Hop describes this song as a reflection on his discussions with Jesus throughout his life and his desire to have a frank and concise discussion about several discrepancies in the human experience one day.
The evening's musical performances will also feature Eric Paslay's "Song in a Hat" which is an interactive live performance that offers fans a unique opportunity to experience firsthand how hits are created. During the show, fans can contribute a song idea or title on a slip of paper and place it into a hat. We will also take song ideas from the chat on Volume.com. Paslay then randomly draws one slip, and the guest whose idea is selected joins him, along with Kristian Bush of Sugarland, Singer-Songwriter Cyndi Thomson, and Singer, Producer, Zac Brown Band Songwriter Chris Gelbuda on stage (if present in the room) to collaboratively craft a new song. Plus, you will share in the royalties if it becomes a hit!
Here are the details on how you can be part of Harmony for Hope on Volume.com:

📅 Date: Saturday, October 18th, 2025
🕕 Start Time: 6:00 P.M. ET
➡️ Detailed Instructions:
• Click this link: https://volume.com/t/WEaaso/
• Select the black “Claim Free Ticket” button
• Proceed to enter your name and email address to create your account
• Check your email for a verification email from Volume.com
• Volume.com will send the ticket to your email. Enjoy the show!

If you have further questions, reach out to contact@hoponacure.org.

Join us for an evening of music & hope to raise awareness & funds for ALS research with an intimate concert featuring top singer-songwriters. Hop On A Cure presents GRAMMY-nominated Eric Paslay’s electrifying Song in a Hat experience at the Harmony for Hope stage, featuring: Eric Paslay (“Barefo...

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 Clelland, 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