Changing the story against ALS
The Institute’s previous lab in Cambridge, Massachusetts was just down the hall from the organization’s offices.
Some might ask…why ALS TDI specifically? Its simple:
Scientists at the Institute actively discover and develop treatments for ALS.
It is the world's first and largest nonprofit biotech focused solely on ALS research.
It is led by people with ALS and their families, meaning the Institute understands firsthand the urgent need to slow and stop the disease.
As I’ve thought about why I support ALS TDI, I’ve looked back on their old and newer publications and materials. The next section is what I found that inspired and appealed to me. Learn more about ALS TDI, its history, and its accomplishments here on their website.
The purpose of a nonprofit biotech
In the ALS Therapy Development Institute’s first annual report, in 2000, co-founder and then-Director Jamie Heywood describes the purpose of the newly formed organization. He sets forth a vision that is strongly appealing—taking the purpose and drive of for-profit pharma and applying it to a not-for-profit. Under this idea, patients become the shareholders and the Institute measures its success in terms of research, and eventually lives, rather than by profit or money raised (though that’s still important). His letter is below:
Traditionally, “disease nonprofits” operate to raise money that is then given out in grants to support research. Efficiency is evaluated by the ratio between fundraising costs and how much money is spent on research. Nonprofits like these often state with pride, “We are very efficient – we have less than fifteen percent overhead,” or, “We had a great year, we raised six million dollars.” This is so pervasive because the purpose of disease-based charities has been defined as philanthropic fundraising.
We challenge this definition. We are redefining the role of nonprofits fighting disease. We exist purely to develop treatments for the patients living with ALS today, not to raise money for research papers. We will have a great year when we have found a cocktail that arrests ALS. We had a good year during 2000 not because we increased our fundraising by more than 400 percent, but because we enabled the first human stem cell transplants in ALS, developed a process to rapidly test drugs for efficacy in ALS, and because we gave patients information to make decisions about their own treatments.
In the corporate world, biotechnology and pharmaceutical companies present themselves to the world by outlining their accomplishments in clinical development. Such companies have generated more than 95 percent of the new therapies available in the world today. Their shareholders demand the rapid, effective development of treatments because that is the only way the companies will make money and thrive. Unfortunately, these companies generally will not attack ALS because the “market” is not considered large enough.
As a nonprofit biotech we also have shareholders to whom we are responsible. My brother Stephen is one of them, as are the hundreds of patients we talk to regularly, and the rest of the 30,000 Americans who are presently living with ALS. Based on our relationships with our shareholders, we know that what they need now is the rapid, effective development of treatments for ALS. And this is what everyone at the Foundation takes responsibility for and strives to accomplish. Ultimately, we will be evaluated not by how much money we raise, but by how successfully we deliver treatments and information that help our shareholders.
Today, the Institute’s unique model in challenging the boundaries between medicine and philanthropy brings both challenges and advantages. Because ALS TDI is not concerned with financial returns for investors, as a for-profit would be, the Institute is able to focus solely on its mission—doing research. And while being a nonprofit does reduce the size of the budget, funding remains more predictable, allowing the Institute to “plan for experiments to run for longer periods of time.”
“People living with ALS visit the lab, and this inspires, motivates [staff]. It gives us a sense of urgency and responsibility.”
Additionally, in the absence of investors, ALS TDI is not forced to rely specific “technologies, compounds, or treatments” and can instead “study both potential treatments and the mechanisms of the disease itself" as well as “replicating studies and validating potential drugs produced by others.” This whole approach has allowed the Institute to establish credibility with research partners, who then “don’t see [the Institute] as a threat or a competitor.”
Ultimately, the method in which ALS TDI works helps to foster not just good research, but also a collaborative and determine spirit within the organization. “People living with ALS visit the lab, and this inspires, motivates employees. It gives us a sense of urgency and responsibility,” says Dr. Theo Hatzipetros, ALS TDI’s Director of Pharmacology. It’s not just the Institute’s lab, it’s the community’s too.
ALS TDI IS A highly-rated charity
Aside from the ideals that ALS TDI was founded upon and continues to practice, reputation, transparency, and efficiency are important for any organization, particularly a nonprofit. The Institute embodies these qualities, spending around 87 cents of every dollar raised directly on research programs, compared to the average 75 cents at most other research labs. This has led to the Institute earning a four star rating from Charity Navigator, a Gold Seal of Transparency from GuideStar, and a national charity designation by the Combined Federal Campaign (the world's largest annual workplace charity campaign).
The Institute is also a member of Medical Research Charities and the International Alliance of ALS/MND Associations. The Institute is a partner of ALS ONE and I AM ALS.