Meet Our Chief Executive Officer: Danielle CarnivalSeptember 22, 2019
I AM ALS.
The ALS community – patients, caregivers, researchers, clinicians, advocates and friends – are joined together by this disease that takes away so much from so many. It robs us of movement, moments, and years and decades of memories never realized.
The vast majority of those in this fight never wanted to be a part of it. When ALS entered your lives it was a strange set of letters—letters that no one wants to hear. Although I have not stood in that moment of receiving an ALS diagnosis, I am joining this fight because I believe in your collective mission, to end this disease. I am joining because I believe that no family should ever be faced with a doctor telling them, “You have ALS and there is nothing we can do to help you.” I am joining because I believe that this is a moment where we can reimagine how we take on disease...and even win. I am joining because I am inspired by you, driven by you, and ready to bring urgency to the search for treatments and cures that evaded us for far too long. I am joining because I have hope.
I feel honored to be joining this movement at this time. I stand committed to leveraging my education and experience and the power of the ALS community to do what we can together to make urgent progress.
I earned my Ph.D. in Neuroscience because I couldn’t imagine a more interesting thing in the universe to understand than the brain and nervous system that controls our every thought, our ability to connect to one another, and our movement through the world. I wanted to contribute to human understanding of what I find to be the most interesting frontier. What I learned was that too little is being done to combat disorders and diseases of the nervous system – in many cases, we aren’t able to effectively transfer new knowledge and understanding to new treatments that matter to patients. Together, we can and will change that.
After grad school, I spent nearly seven years at the White House impacting policy and program changes within the federal government and with private, non-profit, and academic partners. At the White House Office of Science and Technology Policy, I applied these tools to improve biomedical research, to increase opportunities for excellent science, technology, engineering, and mathematics (STEM) learning, and to expand women and minorities underrepresented in STEM, succeeding in STEM careers.
As part of the development and leadership of the White House Cancer Moonshot, I helped lead an effort and team to double the rate of progress to improve cancer prevention, early detection, research, treatment, and care. And as Vice President of the Biden Cancer Initiative, I led the organization’s strategic programs, policies, and priorities to catalyze efforts to bring urgency to improving cancer patient experiences and outcomes — and we made real progress.
Along the way, I was a caregiver for a loved one facing a devastating, terminal diagnosis. Looking back, I recognize that I was lost and lacking the information and tools to feel capable of doing anything to improve the situation my family was plunged into. Knowing what I know now, I would have been more frustrated, I would have been more empowered, and, yes, I even would have been more hopeful for what was possible. By increasing access to information and expediting progress, we can prevent similar feelings of hopelessness in current and future families facing ALS. We can and must do better.
I come to the role of CEO ready for the work ahead. I look forward to hearing from all of you. I am eager to work together to realize a new reality for ALS patients and to change how we unite to combat disease. I believe we can deliver on the hope felt by the ALS community to make real the day we can look at a pALS and say “she had ALS.”
I AM ALS. From this day until we have cures.