ALS Society of Canada
ALS research is at a time of unprecedented excitement and momentum: there has been more progress in the last 5 to 7 years than in the last century. Many of the top ALS researchers in the world believe the scientific community is now poised to find treatments that can significantly alter the course of the disease, and that lack of funding is the only limitation standing in the way of effective ALS treatments being developed sooner rather than later. Since 2014, approximately $20 million has been invested in Canadian ALS research because of money raised through the Ice Bucket Challenge and matched by Brain Canada with support from Health Canada. By 2018, Canada’s ALS research effort will return to its traditional funding levels of $1.5 to $2 million per year. That’s why the generosity of donors plays such a critical role in ALS research in Canada – so we can continue to invest in ALS research at a time when it holds more promise than ever before. In this section, you can learn more about how ALS Canada approaches research-including projects we have funded – and find out about upcoming webinars that you can attend to learn more about ALS research. You can also learn about ALS clinical trials taking place across Canada. If you are a researcher, you can find out how to apply for funding from ALS Canada.
Northeast Amyotrophic Lateral Sclerosis Consortium
The ALS Clinical Research Learning Institute is an annual two-day program dedicated to educating attendees on clinical research and therapy development and empowering this group to be advocates for ALS clinical research. Certification as an ALS Research Ambassador provides attendees with the opportunity to influence and improve the ALS research process. ALS Clinical Research Learning Institute applications are not being accepted at this time. Please check back periodically for updates on the next ALS CRLI opportunity. There are over 350 trained ALS Research Ambassadors to date! You can follow the NEALS ALS Research Ambassadors on Facebook to see what they’re working on. Outreach Efforts Outreach Efforts by NEALS Research Ambassadors Number of Each ALS speaking engagement 1,027 Organization of or participation in an ALS event 261 Interview 110 Speaking or writing to a congressman 2,508 ALS video 65 Creation of or contribution to a website, blog or social media page 441 Published article/column 78 Serving on an ALS committee 232 Mentoring 180 Other 48. This table shows the types of outreach efforts being undertaken by the NEALS Research Ambassadors. Through these efforts, our ambassadors are educating patients, clinicians, press and policymakers about ALS research and moving the field of ALS advocacy forward.
The Forbes Norris MDA/ALS Research and Treatment Center
If you or a loved one is living with a neuromuscular disorder, such as amyotrophic lateral sclerosis or muscular dystrophy, you need comprehensive care and support. The Forbes Norris MDA/ALS Research and Treatment Center carries on the legacy of our founder Dr. Forbes Norris, an internationally renowned doctor in the field of Amyotrophic Lateral Sclerosis research and clinical care. The Forbes Norris Center is one of the largest ALS clinical research centers in the United States, an ALS Association Certified Treatment Center of Excellence, and one of six national Muscular Dystrophy Association ALS Centers dedicated to ALS and muscular dystrophy treatment. At the forefront of neuromuscular disease research for more than 40 years, the Forbes Norris MDA/ALS Research and Treatment Center provides comprehensive ALS diagnostic and treatment services throughout the course of your disease. Our multidisciplinary team provides the scope of care necessary to allow you to live your life with dignity and supports you and your family throughout the course of your illness. Our experienced, knowledgeable staff is committed to providing the outstanding care to effectively manage all aspects of your condition.
The Robert Packard Center for ALS Research at Johns Hopkins
The average ALS patient will live between two to five years from their diagnosis. Through your tax-deductible ALS donation, the researchers at the Packard Center are working to improve the quality of patients’ lives and striving toward a cure. Research into ALS, a disease where subtle things go awry at the gene or cell level, requires a great deal in the way of sophisticated technology and unusually skilled scientists. Donations through your ALS fundraising efforts, events, ALS memorial gifts and planned giving are essential to supporting accelerated ALS research being undertaken in labs all around the world. ALS research is extremely costly and government and corporate support of ALS is limited. Making a gift to the Robert Packard Center ensures that our research will continue. As we are based solely on philanthropic donations, your gift is vital to our success. Checks may made payable to: Robert Packard Center for ALS Research at Johns Hopkins. They can be mailed to: Robert Packard Center for ALS Research at Johns Hopkins. For donation-related questions, please contact Meg Whiteford at 410-955-8684 or via email.
HEALEY ALS Platform Trial
Over the past few months, the Healey Center faculty and staff have worked tirelessly to adapt the HEALEY ALS Platform Trial to the COVID-19 pandemic and prepare for launch. Several locations are now enrolling their initial patients, with more to follow. The HEALEY ALS Platform Trial is a collaborative effort, and enrollment in the trial is available at several sites across the US to bring the trial close to people who want to participate. This groundbreaking approach cuts the time to find an effective treatment in half, decreases costs by a third or more, and is supported by our patients, the FDA, ALS clinicians and scientists and our pharma colleagues. We fully anticipate that more treatments will be added to the HEALEY ALS Platform Trial, supported by pharma, foundation partners, philanthropy, federal and other fundraising initiatives. We encourage the academic and industry community to engage with the Healey Center ALS Trial Design Team at any time to work together on ALS therapy development. Nominations of therapies for inclusion in the platform trial will continue on an ongoing, rolling basis.