As 2019 winds down, we look back on some of the important progress made this year in the fight to change the future of ALS. With the hard work and help from so many across the ALS community, the ALS Association was able to make great strides in our key mission areas, bringing us one step closer to our vision of a world without ALS.

Research

This year we contributed $3.3 million to fund a genome-sequencing database. This global, centralized, cloud-based repository of ALS genetic data is the first such repository of its kind. This grant will fund cloud storage, cloud computing, and the genomic sequencing of 3,000 people living with ALS, allowing researchers worldwide immediate access to a large pool of data. The more people who are involved, the sooner researchers may find new genetic variations that contribute to the disease or potential methods of treatment.

The ALS Association, ALS Finding a Cure (ALSFAC), and MDA jointly awarded a clinical trial grant totaling more than $2.5 million over two-and-a-half years to leading investigators at the Houston Methodist Neurological Institute and Massachusetts General Hospital. This funding award supports Dr. Stanely Appel and his team. Appel co-director of Houston Methodist Neurological Institute, chair of the Stanley H. Appel Department of Neurology and the Peggy and Gary Edwards Distinguished Chair in ALS at Houston Methodist Hospital, and professor of Neurology at Weill Cornell Medical College. The award will expand the first-in-human study that demonstrated promising results leveraging patients’ own immune cells to treat ALS. To learn more about this promising study, CLICK HERE.

We submitted Principles for Urgent, Patient-Centered ALS Clinical Trials: a series of recommendations to clinical trial sponsors and regulatory bodies worldwide that set out a clear framework for the design and conduct of ALS clinical trials that are efficient, impactful, and respectful. People living with ALS deserve the opportunity to participate in research knowing they are in a safe, transparent, and protected environment.

With the help of our many partners, we also submitted comments to the Food and Drug Administration to further inform the agency’s implementation of the final guidance on the development of drugs and treatments for ALS. The comments underscore the need for urgency and commend the FDA for including voices from our community in its rule making process. Click here to view the comments.

Advocacy

Advocacy plays a critical role, and ALS advocates around the country celebrated some key victories this year.

Soon after the new Congress was seated in the beginning of the year, The ALS Disability Insurance Access Act was reintroduced. The bill, which is one of the Association’s top legislative priorities, would waive a five-month waiting period for Social Security Disability benefits for people living with ALS. The bill was introduced with bipartisan support, including 40 cosponsors in the Senate and 90 cosponsors in the House. The bill closes out the year with more than half of the House having signed on as cosponsors.

Thanks to the tireless work of our partners, the Muscular Dystrophy Association, I AM ALS, and our countless ALS advocates around the country, a key spending priority of The Association was passed to secure and expand full federal funding of ALS research. More than 13,800 letters and 3,600 tweets were sent to members of Congress, along with more than 700 meetings held in the past year to make this happen. 

The fiscal year 2020 funding package will provide $20 million for the Department of Defense ALS Research Program (ALSRP), doubling the funding level from 2019. Additionally, the funding package will provide $10 million in funding for the National ALS Registry.

Finally, the spending package will provide $41.7 billion for the National Institutes of Health, a $2.6 billion increase from last year. The NIH is the largest public funder of ALS research in the world, spending $83 million on ALS research in fiscal year 2018. This is truly a huge win for the ALS community, proving once again the importance of joining together to fight this disease.

In June, more than 500 advocates from around the country joined us to storm the hill on our 2019 National Advocacy Day. Patients participated, supported by family, friends, and ALS supporters sharing their inspiring stories and convincing our legislators to join the urgent fight against this disease. We are truly humbled each year by the courage and grace our ALS community demonstrates, personally taking on the fight for their lives.

This year, we also updated our ALS in the Military report, which looked at studies going back to the 1990s showing that people who have served in the military are at a higher risk of developing ALS and dying from the disease than those with no history of military service, regardless of branch or area where they served. Compiling and sharing this information, spreading awareness of these facts, will help us to continue to fight for more funding in the future.

Another priority of the Association is a new bill introduced in Congress that would remove noninvasive ventilators from Medicare’s competitive bidding program, H.R.4945, the Safeguarding Medicare Access to Respiratory Therapy (SMART) Act of 2019. It is our hope that the passage of this legislation will help protect people living with ALS and their right to breathe. We will continue to advocate for its passage and encourage you to help us by sharing your voice in 2020.

Care Services

As we all know, until we find a cure for ALS, there must be care. Living with ALS presents physical, emotional, and financial strain not only on those diagnosed, but their families, friends, and supporters as well. Our 39 Chapters around the country continue to work hard to help ease these burdens as much as possible, serving more than 20,000 people living with ALS and their families this past year. Providing care consultation and local resources, support groups, equipment and communication device loans, as well as financial support, our chapters work to help relieve some of the every day stresses brought on by an ALS diagnosis.

Navigating the world of health care, insurance, and especially Medicare can be very complicated and overwhelming. In response to the many requests we’ve received for guidance, we introduced a new resource to the ALS community resulting from 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. Learn more here: als.pafcareline.org.

This year we also awarded $225,000 in scholarships to 45 inaugural recipients of the Jane Calmes ALS Scholarship Fund, providing financial support to students impacted by ALS. Students from families that are dealing with, or have dealt with ALS, are often overlooked and become collateral damage to the disease. Our hope is this annual fund will help to ease some of the burden for people living with ALS and their families, now and in the future.

We know daily activities, like making meals, doing laundry, mowing the lawn, and walking the dog, take a back seat when providing care for a family member with ALS. This year we created our ALS Care Connection program to help. Through this program (powered by Lotsa Helping Hands), families can set up a private online calendar that can be used to organize volunteers who want to take on some of the tasks that have become less manageable. The program has expanded to include a new mobile app that can be downloaded to your smartphone or tablet making it easier for people to organize a care community for their own family or for loved ones impacted by ALS.

These are just a few examples of highlights from 2019, but the year is not over yet and much more needs to be done. Thank you to all our dedicated partners, volunteers, supporters, and staff for your generosity, your time, your hard work, and your commitment to the ALS community. We could not do what we do every day without you.