Robert Packard Center for ALS Research at Johns Hopkins

12/05/2025

The Packard Center team is attending the 36th Annual International Symposium on ALS/MND this weekend. This conference brings together researchers, clinicians, people living with ALS and advocates from all over the globe.

12/04/2025

Congratulations to Packard Center-funded investigator Jonathan Cooper-Knock who has become the first to be awarded a professorship named after the late rugby league player Rob Burrow.

Dr Johnathan Cooper-Knock, based at the University of Sheffield, has received the Professorship in Translational Neurobiology, which is funded by the Motor Neurone Disease (MND) Association

The award will fund his research into the condition for eight years, which he hopes will result in "at least one treatment in a clinical trial running [by 2028] and several more in the pipeline".

Read more:

The professorship will fund Dr Johnathan Cooper-Knock's research into MND for the next eight years.

12/02/2025

There is still time to make a gift this Giving Tuesday to support ALS research. The Robert Packard Center is 100% supported through philanthropy and donors like you make our progress possible in tackling this devastating disease.

The Packard family is extending a generous matching gift this holiday season. All gifts made through January 31, 2026, will be matched dollar-for-dollar up to a total of $200,000.

Your gift today will amplify hope - and go twice as far in the fight against ALS.

To donate: www.packardcenter.org/give

12/02/2025

This Giving Tuesday, please continue to invest in hope with a gift to support ALS research. Together, we will expand our understanding of this disease and learn how to stop it in its tracks.

In honor of the Packard Center’s 25th Anniversary, Robert Packard’s family is offering a generous match this holiday season. All gifts made through January 31, 2026 will be matched dollar-for dollar up to a total of $200,000.

To donate: https://secure.jhu.edu/form/PACKALS

11/27/2025

Happy Thanksgiving from the Packard Center!

During this special time of year, it is important to pause and reflect on those things that are most meaningful to us. At the Robert Packard Center for ALS Research at Johns Hopkins, we are grateful for our dedicated community of supporters and partners.

Your contributions enable our global network of researchers to continue their innovative projects in an effort to end ALS.
You make our progress possible.

The critical work of the Packard Center is supported 100% through philanthropy. The Packard Center and people living with ALS need your help to continue our fight to end ALS.

Thanks to your generosity, projects that are being funded today will directly advance our fundamental understanding of ALS.

11/25/2025

Final call for entries! Entries for the Longitude Prize on ALS close on December 3, 2025.

The Longitude Prize on ALS is a £7.5 million international program that is incentivizing the use of AI-based approaches to uncover new treatment pathways for the treatment of ALS. With funding awarded incrementally over the course of the Prize, we are calling on individuals and groups from across medical research, biotechnology, computational biology and AI, to enter.

Check out the website for more information - https://lnkd.in/eQbhT8XX

The countdown is on!

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.