A COVID-19 Research Update

Dear Friends,

Project ALS is acutely aware of the unimaginable circumstances that Americans and people around the world are now facing. Our hearts, souls, and minds are heavy with the dire situation that ALS patients, family members, and loved ones are facing every second of every day. COVID-19 is a stark reminder of what people with ALS must endure every day.

Project ALS has faced adversity before, but this is a particularly tough blow. Before COVID-19 struck, we were well on our way to reaching our goal of moving our first-ever lead drug candidate, Prosetin, to ALS patients by summer 2020. The FDA-required safety studies at Charles River Laboratories and the manufacturing program at Patheon were underway and on target. We were working every day with our pre-clinical and clinical research partners at Columbia University, and our team of expert consultants, to finalize our submission to the FDA and confirm plans for our Phase 1 clinical trial. We were churning on all cylinders with fundraisers planned throughout quarters two and three to cover our research expenses planned and unforeseen.

Like everyone else, COVID-19 has thrown us into uncharted territory. All scheduled plans to raise revenue to get Prosetin to patients have been upended: our physical fundraisers and community events have been cancelled through July, and online fundraising has slowed. Academic laboratory research has been mandated to halt indefinitely, and we do not know when clinical trial initiation will be possible. We are working every day to keep things on track but fear we will have to veer from our original projections.

We are essentially at war, and are keenly aware of the hardships that each and every member of our community is facing—but to keep Prosetin moving forward, we need your help. If you are able to, please make a donation or create an online fundraising page here, and share this message with your community.

Next Tuesday, April 7th, at 1pm EST, join our team live on Facebook for a candid discussion of the challenges facing Project ALS research at this critical time. Now more than ever, we need to hear from you.

Meredith, Valerie, Erin, & the Project ALS team

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Medidata Institute and Project ALS Launch Partnership to Accelerate New Treatment Strategies

Project ALS is excited to launch a new research partnership with the Medidata Institute targeting new, actionable insights into ALS disease progression and subtypes.
Medidata develops world-leading solutions for the life science industry, with digital platforms spanning clinical development, commercialization, and real-world data. Through this collaboration with Project ALS, Medidata will turn its Rave Omics biomarker discovery platform, as well as its considerable manpower and expertise, toward identifying new biomarkers and patient subsets of ALS.

For Project ALS, this collaboration comes at a pivotal time. We now know of more than 60 genes that are involved in some way in ALS…but we are only beginning to understand how these genetic mutations cause or contribute to the disease. We realize that people who have different subtypes of ALS are likely to respond differently to potential treatments, but we don’t have enough information to predict this response before lengthy clinical trials. Critically, we want to design better clinical trials for Prosetin and future drug candidates that will emerge from THE CORE…and with Medidata, we have a real chance of moving the field toward more humane, informative clinical programs.

First up in the partnership? A pilot study that will feed data from a 2012 ALS proteomics study and matched clinical data from the same patients into the Rave Omics platform.  The goal being to figure out whether specific protein signatures impact how quickly a person’s ALS progresses. Project ALS thanks SomaLogic and the ALS Living Library at Mass General for providing the raw data for this pilot study.

Read the press release from Medidata here.

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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 fundraise.projectals.org/dtat2019
  • 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 fundrasise.projectals.org/dtat2019
  • 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 fundrasise.projectals.org/dtat2019
  • 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:  http://www.donorsearch.net/matching-gifts-guide/

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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