Each year, approximately 30,000 Americans are diagnosed with Amyotrophic Lateral Sclerosis (ALS), a relentless disease that gradually robs people of their ability to move, speak, eat, and ultimately breathe. Despite extensive research efforts, progress towards a cure has been frustratingly slow.
The Foundation for the National Institutes of Health (FNIH), the fundraising arm of the National Institutes of Health (NIH) — a leading funder of public-private partnerships — has taken a groundbreaking step with the creation of Accelerating Medicines Partnership® in Amyotrophic Lateral Sclerosis (AMP® ALS).
This public-private partnership unites government entities, life science companies, academia, foundations, patient-focused groups and research nonprofits in a concerted effort to accelerate the development of treatments that can significantly improve the lives of people with ALS.
In the weeks leading up to the AMP ALS announcement, we set goals for our campaign:
Navigating a Crowded Media Landscape
The neuroscience space has been very crowded this year, particularly in trade media, with numerous new discoveries being published monthly in prominent journals like Nature and JAMA. This made it difficult to capture reporters’ attention. Additionally, exactly two weeks prior to our client’s announcement, a well-known ALS nonprofit announced an aggressive capital campaign with a fundraising goal nearly four times larger than the program FNIH was set to announce. Compounding this, we received feedback earlier in the year from multiple reporters stating that they do not cover program launches–only program results.
Crafting a Heartfelt Narrative
To overcome these challenges, we aimed to evoke emotion and pull on heartstrings. Our approach was to humanize the program, crafting a story arc for reporters that clearly expresses the emotional and physical pain that patients and families experience when touched by ALS, offering a spokesperson at strategic points along this narrative to guide the story.
Executing a Targeted and Adaptive Strategy
Our campaign set out to raise awareness around the severe unmet need for ALS treatment, and the significant role the AMP ALS program will play in helping to define and advance new diagnostics and therapies for patients. We focused on strategic earned media outreach and the production of a program overview video, from which we generated a variety of social cuts.
We promoted the program launch by weaving together insightful science-based stories from FNIH leaders and moved them with emotionally powerful testimonials from patients and caregivers. This strategically positioned AMP ALS in front of potential new partners, stakeholders, investors, the ALS community, and the general public.
We conducted extensive research to develop a highly tailored media list, identifying reporters with a vested interest in neurology, neuroscience, and/or ALS. We even identified those who had publicly spoken about how ALS has touched their own families. Each pitch was carefully tailored to resonate with the individual reporter.
Incorporating the patient voice was crucial for maximizing the announcement’s media appeal and impact. However, ALS symptoms are unpredictable and pose a challenge. Our primary patient-spokesperson was hospitalized suddenly and became unavailable in the midst of our active media outreach. Our team swiftly pivoted after CBS Newspath responded to our outreach. We worked at high-speed under a great degree of pressure to identify an alternative patient-spokesperson who resided in one of the few TV markets where CBS was willing to send a crew. Working closely with FNIH, we prepared the new patient-spokesperson, enabling us to move forward with the interview. The CBS package aired 200 times on network affiliate stations nationwide, reaching a potential audience of over 3 million people.
Objective: Generate widespread awareness about the program’s impact on the ALS community
Increase the visibility of key FNIH thought leaders
Spark interest in the program
Highlight the effectiveness of the FNIH’s partnership-based research model
Expand support for FNIH by broadening its philanthropic donor base and engaging new supporters
