Run the 2020 TCS New York City Marathon for Project ALS!

Project ALS is proud to once again be a bronze level charity sponsor for the 2020 TCS New York City Marathon.  Thanks to the efforts of our incredible runners last year we raised over $110,000 – all applied towards identifying and funding the most promising scientific and medical research for effective ALS treatments.

This year, we have bibs for 25 runners ready to join the Project ALS Marathon Team!  Runners are required to meet the $3,000 fundraising goal and in return each runner can expect:

  • One race bib
  • Help setting up your own online fundraising page
  • A weekend of marathon team bonding events including a complimentary carbo-loading luncheon before race day
  • Updates on the advancements in ALS research that runner funds have directly supported
  • A Project ALS 2020 TCS New York City Marathon performance running shirt

If this sounds like your kind of 2020 TCS New York City Marathon experience, then send an email to [email protected] — we’ll follow up with runner registration details and next steps!

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Valentine for a Pioneer

Jaci and her horse Bud,  March 2019

Jaci is blazing a path that hopefully will not just cure her but set a course of treatment for countless others.” – Lori Hermstad, mother.

February 14th is a significant day for the Hermstad family. On this day in 2011, Alex Hermstad lost her battle with ALS at age 17. On this same day exactly eight years later, Alex’s twin Jaci was diagnosed with the same rare, aggressive form of ALS that took her sister. Jaci got to work building a dream team captained by drug regulatory expert Dr. Lauren E. Black. The team included Jaci’s family, community, Project ALS, Drs. Neil Shneider and Robert Brown, Charles River Laboratories, and the FDA. Now, a year later, Jaci has received eleven doses of jacifusen, a new type of gene therapy named just for her. In this one year, Jaci has become a portrait of courage for the ALS community and beyond. Thanks to her advocacy, jacifusen was born, and will now be tried by others with the same genetic form of ALS.

In October 2019 at the Project ALS fall gala, Alex and Jaci’s mother Lori spoke of being overcome with “a sense of hope and faith that comes from [her] twin daughters: one who fought tirelessly for six years to lay the groundwork for future treatments, and the other who we hope fulfills the destiny of her sister’s love and sacrifice.” For the Hermstads, Valentine’s Day is not just another holiday – it’s a constant, indelible reminder of the sisters’ immense love and sacrifice. Today we honor Alex and Jaci and reflect on the significance of their story. They have fearlessly and fervently paved the way for so many others. They are making history.

Learn more about the collaboration between The ALS Association and Project ALS to fund an expanded access program for jacifusen at Columbia University.

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Project ALS Introduces Prosetin

What’s Prosetin?

If you’ve been following Project ALS, you have probably heard us mention PHB, our working name for The Core’s first drug candidate-in-development. Now, we are proud to announce the final version of PHB—the real thing—a fully optimized, comprehensively tested drug for ALS called prosetin.


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Ai Yamamoto Joins Research Advisory Board

Project ALS is thrilled to welcome Dr. Ai Yamamoto to the Research Advisory Board and recognizes her leadership as she is joining our decision-making body. Dr. Yamamoto is the Associate Professor of Neurology and Pathology and Cell Biology at Columbia University and is a foremost expert on protein clearing, or autophagy, in neurodegeneration, particularly in Huntington’s and Parkinson’s diseases.

Project ALS has partnered with Dr. Yamamoto for about three years, as we strive to identify the role of autophagy in Huntington’s, ALS, and related diseases. We look forward to seeing where her leadership will take us.

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Project ALS x Mets Event | A Night to Believe: Bites, Brews, and Baseball Tues. June 4

Join us on Tuesday, June 4th at 7:10 PM as the New York Mets take on the San Francisco Giants

When Project ALS was founded by the Estess sisters in 1998, research to treat and cure ALS (Lou Gehrig’s disease) was conducted by dedicated researchers who worked separately on various aspects of the disease. Project ALS changed that approach dramatically by requiring that funded researchers and doctors from different disciplines work together, share data openly, and meet shared research milestones.

In the past 20 years, the Project ALS family has grown far beyond the Estess sisters and their team of researches to include a diverse group including patients, donors, doctors, staff, friends, researchers and more. In our 17th year with the Mets, we have created a strong team that represents myriad of interests, backgrounds and passions that contribute to the Project ALS family and demonstrates the power of us all coming together for a common cause.

Field Level Seating at Citi Field, Flushing, NY

Pre-Game Party in Picnic Area at 5:00 PM featuring unlimited food and drink

Corporate sponsorships available

$125 per individual ticket ($50 tax deductible per ticket)

Proceeds benefit the Project ALS Therapeutics Core at Columbia

Tickets and sponsorship packages can be purchased here!

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A Step-by-Step Guide on How to Maximize Your Fundraising for Don’t Talk-A-Thon 2019

To create a personal fundraising page:

Why create a personal fundraising page?  This option allows you to create your own, unique fundraising page that can be customized, updated with stories, and shared via a unique link to your friends and family via email or on social media.

  • Visit the Don’t Talk-a-Thon master page at
  • Click the “Become a Fundraiser” button.  
  • When prompted, choose the “As an Individual” option.
  • Classy (our online fundraising platform) will walk you through subsequent steps to create your own personal donation page.
  • PRO TIP:  Make sure your donation page is personal!  Include information about:
    • Why you’re participating in the Don’t Talk-a-Thon.
    • Your connection to Project ALS, ALS research, or how ALS has affected you/someone you love.

To get your family, friends, or coworkers to fundraise on your behalf:

Why should family and friends create a fundraising page?  After creating your personal fundraising page, you can leverage the support of your family or friends to make their own fundraising pages that link up to your own page.  This helps boost your fundraising total and helps spread the word about the Don’t-Talk-a-Thon to people within the networks of your friends and family.

  • Visit the Don’t Talk-a-Thon master page at
  • Click the “Become a Fundraiser” button.  
  • Select the “Join a Team” option.
  • Search for the individual fundraiser that you would like your page to link up to.
  • Classy will walk you through the next steps to make your page and join that fundraiser’s team.

To donate without making a fundraising page:

Why should I donate to the Don’t-Talk-a-Thon?  We understand that you might personally want to contribute to the Don’t-Talk-a-Thon but are not comfortable with asking your network to donate.  That’s why we have a Donation option – you can contribute however much you are comfortable giving and those funds will still count towards the Don’t-Talk-a-Thon’s overall fundraising goal.

  • Visit the Don’t Talk-a-Thon master page at
  • Click the “Donate” button.  
  • Complete the donation form that populates in the next screen.
    • If you’re making your donation in honor of someone, please share that information in the “Leave a Comment” section.

Fundraising Tips and Suggestions

Tips for Online Fundraising:

  • Share updates on your donation page.
      • Keep your donors informed – share how close you are to hitting your personal fundraising goal.
      • Share stories about why you will be taking an oath of silence for an hour on Thursday, May 30th.
      • Share pictures that convey why you’re fundraising for ALS research.
        • Share a picture of you with the “I’m not talking for…” sign and your reason for taking an oath of silence written on the sign.
        • If you’ve fundraised for the Don’t-Talk-a-Thon before, then post those to your page so supporters can see your commitment over the years.
      • Share updates about how you’re staying motivated – ALS is a complex, intense disease.  Share your wins and struggles fundraising for this cause.
  • Leverage social media.
      • Again, don’t be afraid to get personal about why you’re fundraising for Project ALS research.  You’re going to be taking an oath of silence for an hour on a work/school day – that’s a big commitment!  Keep your followers in the loop through pictures, statuses, tweets, etc.
        • Be sure to include a link to your personal fundraising page with each social media post so you can turn those likes into donations.
      • If you’re holding a fundraising event or gathering as part of your donation efforts, share it on social medial and include a link to your personal fundraising page for those that can’t make it in person.
  • Involve your family and friends – encourage them to:
    • Share your personal fundraising page link with their network via email and social media.
    • Join your fundraising team by creating a linked fundraising page on Classy.
    • Include messages with the donations made to your page so visitors to your personal fundraising page can get insight into your support network.

Tips for Fundraising via Post-Mail

  • Mailing fundraising letters to your family, friends, or colleagues is a great way to engage less technologically inclined prospective donors.
  • In your letter, be sure to include:
    • Why you’re participating in the Don’t-Talk-a-Thon with Project ALS.
    • The fact that you will be taking an oath of silence on Thursday, May 30th – during a work/school day – to be honor those ALS patients who lost the ability to speak.
    • Pictures related to previous Don’t-Talk-a-Thons you’ve participated in or pictures related to why you’re participating in this fundraising campaign.
    • Ways to donate.  Share:
      • A link to your personal fundraising page
      • Project ALS’s mailing address and required information for check donations.  All checks must:
        • Be made out to “Project ALS”; and,
        • Include your name as the credited fundraiser in the memo section.
      • Check should be mailed to:  Project ALS 801 Riverside Dr. Ste. 6 G New York, NY 10032

Tips for Hosting a Fundraising Event

  • Partnering with a local business is a great way to raise funds towards your goal
    • Consider hosting a benefit happy hour or meal special at a bar or restaurant in your community.
    • Add details to your fundraising page so supporters can attend.
    • For exposure, send Project ALS an email about your event to [email protected] and we will publicize its details on Project ALS social media channels.
    • Make sure you ask the partnering business to share your personal fundraising page link on their website or social media accounts.
  • Host a peer-to-peer fundraising night at your home.
    • Previous fundraisers have hosted friends and family at their homes and provided drinks/food in return for contributions to their personal fundraising page
      • This is a great opportunity to teach your network how to make donations to your personal fundraising page via their phones.

Tips for Corporate Fundraising

  • Many companies have “donation matching” programs.  If an employee raises a certain amount of money for a charitable cause, your employer might match that amount to a certain level.
    • Consider reaching out to your employer’s human resources representative to see if your company has a donation matching program
  • For more information on this strategy, check out this helpful article:

Thanks so much for your support!

Vanessa at Project ALS

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Project ALS and Columbia University Announce the Project ALS Therapeutics Core at Columbia

Columbia University and Project ALS today announced the Project ALS Therapeutics Core at Columbia, a 3-year, $6.3M initiative toward the first meaningful therapies for ALS. The Core is the world’s first and only partnership between a world-class academic institution and a leading nonprofit organization dedicated to a full-spectrum approach to ALS drug development, preclinical evaluation, and human clinical trials.

The goal is better clinical trials—and the first effective treatments for people with ALS, a uniformly fatal neurodegenerative disease closely related to Alzheimer’s, Parkinson’s, and Huntington’s diseases. Already, the Core has yielded a novel drug, and evaluated dozens of commercial compounds in partnership with pharmaceutical companies.

The Core begins and ends with ALS patients—it will utilize patient blood samples toward drug screening, biomarker discovery, and genetics studies, and deliver better therapeutic options back to the clinic, to patients who have participated at the start of the process.

“For the first time, ALS patients can directly participate in research that will move us toward therapies that actually work,” said Neil Shneider, MD, PhD, Director of the Eleanor and Lou Gehrig ALS Center at Columbia. “The Core provides an immensely exciting opportunity to capitalize on decades of ALS advances and translate them into meaningful treatments now.”

Read the full press release here, and stay tuned for more information about the Core. In the meantime, please contact [email protected] with any questions about this exciting new initiative.

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New ALS Drug Screening Platform Identified; Leads to Early-Stage Drugs of Promise

Q&A with Project ALS Researcher Dr. Sebastian Thams, Karolinska Institute, on His Recent Discovery, Published in Molecular Therapy

Can you describe your discovery that was recently published in Molecular Therapy?

In our recent paper, we present a new screening platform, in which we elicit neurodegeneration by exposing ALS motor neurons to a biological stressor. We used this assay to screen for neuroprotective compounds reversing ALS-associated cell stress. We identified two groups of promising compounds, which increased motor neuron survival in mouse and human cultures, and delayed loss of muscle nerve endings in ALS mice. These compounds included protein kinase inhibitors and a bile acid. Altogether, our results have now enabled us to start the development of completely new drugs for ALS.

How does this discovery add to the field of ALS drug testing?

Our study demonstrates that stem cell-based screening models are valuable tools for swift and robust evaluation of potential drug candidates. As a proof-of-concept, we showed neuroprotective drug effects in mouse and human cell cultures, as well as in muscles from ALS mice, thereby strengthening the notion that important results from cells in cultures can be applied to ALS patients in the future.

How does this bring us closer to treatments for patients? 

We have now identified promising compounds that reverse disease-related processes in motor neurons. While most of these compounds are not suitable for direct testing in patients in their present form, they possess important neuroprotective properties, which we are now taking advantage of. The compounds are in the process of refinement and modification to be more suitable for treatment in patients. We are optimistic that the compounds can soon be ready for testing in ALS patients.

How has Project ALS affected your career?

Project ALS has created a stimulating academic environment for cutting edge translational stem cell research, which I had the great opportunity to be a part of during my time at Columbia University. My experience at the Project ALS laboratory provided me with essential tools that I now use in my own laboratory. The nurturing setting fostered an invaluable international network, which I benefit from in current collaborations.

What did you focus on in your early work with Project ALS? 

I was particularly interested in setting up new platforms for drug screening using stem cell-derived neurons. I focused specifically on the intrinsic properties of motor neurons that render them susceptible to neurodegeneration. My outstanding goal was to gain new insights into motor neuron vulnerability, and subsequently, use this knowledge to design new therapies for ALS.

What else have you been working on recently? 

I presently divide my time between working as a physician and a scientist at the Department of Neurology, Karolinska University Hospital in Stockholm, Sweden. I am involved in both clinical trials for new ALS treatments and basic research projects related to cell stress mechanisms in ALS. Time management is a struggle when you split your attention, but I have the great opportunity to work on projects ranging from cells to patients. My goal is to improve the clinical management for ALS patients, and hopefully contribute to the development of more potent treatments for the disease.

Read the published study here.

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Kirchhoff Family Fellow Proposes New Therapeutic Strategy in ALS

Joesph Klim, PhD, a Kirchhoff Family Fellow at the Lab of Kevin Eggan, PhD at Harvard University has discovered that restoring expression of the gene Stathmin2, or STMN2, rescues motor neuron degeneration, a hallmark of ALS. Findings were published on January 14th, 2019 in Nature Neuroscience.

Dr. Klim has spent the last three years studying TDP-43, a protein previously known the be involved in ALS. His recent discovery shows that TDP-43 sustains levels of STMN2, a mediator of motor neuron growth and repair. So when TDP-43 is perturbed, STMN2 is diminished and motor neurons suffer as a consequence, causing the body to lose the ability to move. Klim used patient stem cell models of ALS, as well as spinal cord samples donated by dozens of ALS patients, to show that boosting STMN2 could slow motor neuron degeneration in patients, regardless of their cause of ALS.

Said Klim, “Our work highlights STMN2 as a credible drug target for ALS and a potential new biomarker.”

Named in honor of former Project ALS board member and inspiration Tom Kirchhoff who passed away from ALS in 2015, the Tom Kirchhoff Family Post-Doctoral Fellowship at Project ALS is given to promising young scientists already making a difference in ALS research. “After meeting the Kirchhoff family”, said Klim, “I was inspired by their strength and courage to pursue ALS treatments as Tom battled this devastating disease and by their resilience and determination to continue this fight after his passing. As the Tom Kirchhoff Family Postdoctoral Fellow, I had the freedom to pursue this complicated and long-term project, and I was bolstered in my efforts by the strong Kirchhoff family spirit.”

Klim’s breakthrough demonstrates the power and interconnectedness of those who are affected by the disease, and those researching it – an important tenet of the Project ALS mission. Said Dr. Kevin Eggan, “These experiments…point towards a clear path for testing whether repairing STMN2 in our friends and family can slow or stop their disease.”

Read more about the study on the Harvard Department of Stem Cell and Regenerative Biology’s website.

(Photo: Dr. Kevin Eggan discusses Klim’s findings at the Project ALS gala onstage with the Kirchhoff family)

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