Next week, the Les Turner ALS Foundation will welcome its new CEO, Laura Freveletti. I’m thrilled for Laura and the Foundation and will work closely with her, our board, staff and our many partners to help orient her over the next couple of months.
Making the decision to leave the Foundation after eight years was not an easy one. I came to the ALS community shortly after I lost my mother Sally to the disease. I have stayed a part of this community because it continues to inspire me every day. And my commitment to work in the ALS community does not end here.
The ALS world looked very different in 2015. Riluzole was the only drug approved for ALS. There were few clinical trials in the pipeline following the disappointing failure of the dexpramipexole trial. The tools of ALS clinical practice were scarce – no digital or other biomarkers, and a limited number of pulmonologists who specialized in ALS. The concept of “patient-centric” advocacy was not yet widely embraced and other than support groups, people living with ALS and their caregivers had few options to connect with one another.
When I stepped in as CEO, the Les Turner ALS Foundation had a 35-year history of funding world-class ALS research and a large multidisciplinary clinic at Northwestern Medicine, and it offered expert, personalized support services visits and education to several hundred people living with the disease each year. The challenge in this new era was to leverage the strengths of the Foundation with the greater ALS world, and we did so by seeking and finding collaborators – people living with ALS, caregivers, researchers, clinicians, advocates, donors and industry partners.
Under the umbrella of the newly-formed Les Turner ALS Center at Northwestern Medicine, we coordinated the efforts of the well-established Lois Insolia ALS Clinic with the various ALS research laboratories, headed by some of the brightest minds in ALS research, under the direction of Dr. Robert Kalb. We expanded the basic research funding model and actively sought out clinical trials. Soon, the Center had over 75 professionals working cohesively on all aspects of ALS research and clinical care.
In 2022, we offered 19 clinical trials and studies under the leadership of Dr. Senda Ajroud-Driss. And today, we have three approved drugs for ALS with several more in the pipeline along with meaningful biomarkers, which will speed up clinical diagnosis and management.
Over the years, we re-tooled our support services program by involving people living with ALS in every aspect of our decision-making process. Today, not only do several hundred families continue to receive our direct support, but thousands more have benefitted from our online support groups, our ALS Learning Series monthly webinars and the My ALS Decision Tool™.
Our dedicated board of directors worked with me to help shape the next steps we would take together. We expanded our board with intention and brought people with lived experience of ALS into positions of leadership. We assembled a phenomenal staff with the expertise, energy, tenacity and kindness to take our programs to the next level, always putting people living with ALS at the heart of everything we do. It’s a powerful team – one that has my complete trust.
We did all of this by seeking and finding areas of collaboration. In fact, there is not one major ALS organization, private or public, with whom we have not partnered in advancing research and advocacy and, recently, a new national ALS Strategic Plan. The Les Turner ALS Foundation remains a strong, passionate and independent force in the ALS community. Even after 46 years.
As I hand over the reins to Laura, I thank each one of you for your part in these successes and for your faith in me. What we have accomplished together in eight years is astounding, but we are far from done. It has been an honor and it is my fervent belief that we will solve ALS in our lifetime. And we will do it together. We have no time to waste.
With deep gratitude,