This post is part of the series 14 Questions, featuring interviews with disability advocates regarding their work and insights into the Complex Rehab Technology (CRT) industry. In our latest post, Numotion Director of Advocacy Strategy, Justin Richardson interviews Calaneet Balas, President & CEO of The ALS Association.

Richardson: You’ve been President and CEO of The ALS Association since 2017 but also held several other leadership roles prior to joining the Association. Please tell us about your previous nonprofit experience.

Balas: Before joining The ALS Association, I was the CEO of the Ovarian Cancer National Alliance (OCNA) where I helped raise awareness of ovarian cancer by testifying before Congress and speaking with major news outlets like The New York Times, Washington Post, and NBC Nightly News. While with the OCNA, we collaborated and eventually merged with another organization to create the Ovarian Cancer Research Fund Alliance, the largest global organization dedicated to ovarian cancer research, advocacy, and patients in 2016. We were fighting ovarian cancer on all fronts the way The ALS Association does. Prior to the ovarian cancer organizations, I was the Chief Strategy Officer for the Mid-Atlantic Region of the Arthritis Foundation.

Richardson: What led you to The ALS Association and how is the Association’s leadership unique as compared to your work in previous roles?

Balas: While the Association has made enormous progress in the search for treatments and a cure, I saw this role as an opportunity to draw upon my experiences in much larger disease spaces. I found the Association’s three-faceted mission extremely compelling. As we boldly pursue treatments and a cure for ALS, we also are leveraging our nationwide presence to provide care services locally and calling our community to action to ensure that policy decisions are made in the best interests of the people living with ALS.

Richardson: How are you tackling those three mission areas?

Balas: We are intent upon keeping the research and drug development pipelines full and funded, helping more people with ALS enroll in more clinical trials, and bringing the patient voice to the fore in the discussion and design of trials and regulatory guidelines. Concurrently, are investing in tools and strategies that facilitate collaboration and sharing of data and specimens. And while we are proud to be the country’s largest philanthropic funder of ALS research, the dignity, comfort and security of the people we serve are paramount. We’re engaged in ensuring that the highest standards of multidisciplinary care accessible to all people with ALS, regardless of their geography. We are helping people with ALS preserve their independence and ability to communicate through education, assistive technologies, and social support. Finally, we are leading one of the largest advocacy movements in the disease space. Our movement is powered by 20,000 determined ALS advocates who make regular visits to their elected representatives, send letters and use their social media networks to ensure the interests of the ALS community are top of mind when lawmakers consider bills affecting access to treatments, services and benefits.

Richardson: How many total chapters make up The ALS Association?

Balas: The Association currently has 39 local chapters across the country.

Richardson: How many people does the ALS Association serve each year?

Balas: Last year we served more than 20,000 people living with ALS and their families, including more than 2,400 veterans who have the disease. Every 90 minutes someone is diagnosed with ALS and every 90 minutes someone dies from the disease, but there are many new treatments currently in the pipeline that provide so much hope for the future. As new treatments are found, this population will continue to increase as people will live longer, with greater quality of life.  Until there is a cure, there needs to be care and our chapters are focused on providing the best possible resources and support for our ALS community.

Richardson: An ALS diagnosis can be overwhelming. What support services does The ALS Association provide to a newly-diagnosed individual?

Balas: We recognize how powerfully overwhelming an ALS diagnosis is, not only to the person with the disease, but to that person’s family and friends. We are here to be the port in the storm. As we work towards treatments and a cure, our chapter network provides education, information, care consultation, support groups for emotional and social connection for people with ALS and caregivers, equipment and communication device loans, as well as financial support to help relieve some of the everyday stresses brought on by the disease.

Richardson: What support services are available to the newly-diagnosed person’s family and/or friends?

Balas: Many of the services available for people diagnosed with ALS are also useful to their support network. We also offer a service called ALS Care Connection, which helps the support network to coordinate activities, including meals, transportation to medical appointments, scheduling offers to give caregivers a break, and other tasks. ALS Care Connection provides a private online space where community members can offer words of support and encouragement.

Navigating the world of health care, insurance, and especially Medicare can be very complicated and overwhelming.  We introduced a new resource thanks to our expanded relationship with the Patient Advocate Foundation (PAF).  The ALS Medicare Resource Line provides people living with ALS, their family members and caregivers free, direct telephone access to Medicare experts who can provide assistance with navigating eligibility and enrollment coverage that impact access to the critical care they need.  Medicare experts can be reached via a dedicated 800 number or by visiting their website.

Many caregivers can benefit from assistive technology and adaptive equipment that can make life easier and less stressful, both physically and mentally. The Association can help provide or arrange for things like adaptive clothing designed for people who have difficulty dressing; sliding transfer systems that can help with bathing people who have ALS; personal pagers to notify caregivers that a person with ALS needs attention; portable ramps for thresholds or stairs can provide access for a person with ALS without permanently modifying the home; and home automation systems that can allow people with ALS to remotely open doors, adjust thermostats, and turn on a TV, radio, or many other devices. 

Richardson: What are some of the outcomes of research programs that were funded through Ice Bucket Challenge dollars?

Balas: The ALS Ice Bucket Challenge provided us with incredible opportunities to expand our funding for research and to facilitate more, better collaboration across the research community. Since the ALS Ice Bucket Challenge in 2014, we have tripled the amount we spend on research every year and we are committed to increasing this spending as we see continued outcomes such as the discovery of five new ALS genes and promising work with designer DNA technology, neuroimmunology and other approaches. From the earliest stages of our program, The ALS Association has recognized novel approaches that have led to significant ALS research breakthroughs.

Richardson: What is the state of ALS research today?

Balas: The Ice Bucket Challenge funding helped researchers find new ALS genes, which in turn, helps us narrow our targets for treatments and a cure. In fact, our total commitment to research since the Ice Bucket Challenge is $98M.  Right now, we are funding more than 135 grants in 15 countries.

Richardson: How much is in the patient clinical trial stage? Are there promising trials in the current research pipeline?

Balas: There are 31 interventional drug trials currently enrolling patients. The ALS Association has supported at least 12 of them during their development. Very recently, we announced a $3M commitment to the first platform trial for ALS at Mass General in collaboration with the Barrow Neurological Institute and the Northeast ALS Consortium. Platform trials allow researchers to test and evaluate multiple treatments at the same time and will speed up efficacy trials for ALS Research. We also continue to provide significant financial support for the infrastructure needed to ensure ALS trials run effectively.

As for specific therapies, The ALS Association, our partner ALS organizations, and the wider ALS community are hopeful that several drugs currently in Phase 3 clinical trials will prove to be successful in slowing, halting, or reversing ALS.

Richardson: Do you think it would be possible to duplicate the success of the Ice Bucket Challenge campaign in a future effort?

Balas: I’m an optimist, so I believe our best efforts are still ahead of us. We’re continuing to build on the accomplishments made possible by the ALS Ice Bucket Challenge and as the public becomes more aware of the positive outcomes that campaign enabled, they’ll continue to support the fight against ALS. I don’t know if we will ever be able to recreate the viral sensation that Pete Frates and Pat Quinn championed.  The Ice Bucket Challenge brought so much global awareness to ALS, nothing like we’ve seen in our lifetime with any disease.  I can assure you though, we will keep the momentum going and we will not stop until ALS has been cured.

Richardson: Despite the current political climate, The ALS Association has experienced quite a few legislative “wins” in recent years when compared to other healthcare related efforts. To what do you credit this bipartisan support for the Association’s legislative priorities?

Balas: Through the work of ALS Advocates for more than 20 years, Members of Congress know that ALS is a devastating disease that can impact any American. They know the need for care transcends party or politics. Our ALS Advocacy community is 20,000 people strong and we know lawmakers hear us when we call on them for action and support. Just last year, we supported over 690 meetings with members of Congress and generated over 73,000 advocacy messages to the house. This level of influence just helped secure a $10M increase in funding allocated to the Department of Defense to research the connection between ALS and military veterans. It also helped us secure $42B in fiscal year 2020 funding for the National Institutes of Health to continue to fund critical ALS research.  Right now, we are actively rallying support in the House and Senate to eliminate the five-month waiting period imposed on people with ALS who are seeking to draw on their Social Security Disability Insurance benefits, to preserve access to technology that supports communication, mobility and independence for people with ALS. We’re also working with coalition partners to preserve protections for pre-existing conditions.

Complex Rehab Technology (CRT) plays a crucial role as ALS progresses. What CRT advancements specific to the ALS population would you hope to see in place in the next ten years?

Balas: I hope that in ten years we don’t need any CRT because we’ve cured the disease, but if that is not the case, the ALS community will continue to rely on this equipment while living with this disease. Complex Rehab Technology plays a critical role in providing the best quality of life possible for people living with ALS, increasing their independence and mobility for as long as possible.  Over the next decade, I am hopeful the advancements in this technology will continue to provide the comfort and benefits critical to helping someone with ALS and will be delivered in a manner that’s affordable to all who need it.

Richardson: What is the best way for our readers to follow your work and that of The ALS Association?

Balas: The most immediate and up-to-date source of news on the Association is our website (alsa.org) and our social media channels like Facebook and Twitter. I’d also recommend your readers follow our blog at https://alsadotorg.wordpress.com/. It has updates on developments throughout the ALS community, not just within our organization. They can learn about drugs in the pipeline, clinical trials, relevant legislation, research discoveries, and other stories of interest to people living with ALS and their families.