Optimizing Collaboration

In the past, ALS research has been fractured and duplicative with researchers working in silos—that environment creates a breeding ground for redundancy and inefficiency

The ALS ONE partnership unites leading ALS experts from a wide array of leading institutions as one team working toward a common goal.  These stakeholders regularly communicate, share data, discuss findings, and establish best practices. This partnership improves coordination among research, care, and treatment teams, ultimately reducing the duplication of efforts.

The unprecedented linking of minds and resources from Massachusetts General Hospital (MGH), University of Massachusetts Medical Center, ALS Therapy Development Institute (ALS TDI), and Compassionate Care ALS (CCALS) is unique for its leadership in efficiency, dedication to innovative research, and commitment to increasing access to care and treatment.

From The Healey ALS Platform Trial at MGH, the very first ever of it’s kind, ALS TDI’s AT-1501 (Anti-CD40-Ligand Antibody) trial, to the anti-sense oligonucleotide (ASO) trial to target the C9orf72 gene under the direction of Dr. Brown at UMass Memorial; among many others, you can feel confident that your donations are impacting cutting edge and promising collaborative research. Meet our team

Since discovering the first gene that causes ALS over 20 years ago, Dr. Robert Brown of the University of Massachusetts Memorial Medical School, has worked to develop gene therapies for people with ALS. Through an ALS ONE partnership with MGH, the team is now altering genes in patients using a harmless virus delivered in a single dose, potentially revolutionizing care and treatment for people with genetic forms of ALS.

Researchers at ALS TDI are developing a drug that restores immune system balance and reduces inflammation. Meanwhile, a team at MGH has developed new imaging tools that measure inflammation in patients with ALS. The ALS ONE partnership has hastened the development of this promising anti-inflammatory therapy to bring it from the lab to patients—and preclinical work is under way.  

Our partners at CCALS and the ALS clinics at MGH and UMass Memorial Medical Center have streamlined a common release form, allowing enhanced communication between between care teams and treatment teams, and increased referrals for high-quality care.

ALS ONE’s dedicated ALS Research Access Nurse, Judith Carey, R.N., located at the MGH Healey Center for ALS, fields over 700 calls annually from patients worldwide to assist them in navigating clinical trials for which they may be eligible. Judy is a tremendously compassionate and knowledgeable resource who connects patients with clinical trial opportunities, either at MGH or elsewhere, which helps the patients, and helps the trials run faster. Patients and families can contact Judy to learn more about clinical trial opportunities by emailing her at: jcarey8@partners.org.

Patient-Focused Solutions

Patients with ALS can’t afford to wait—the typical life expectancy upon diagnosis is 2-5 years

The partnerships forged by ALS ONE bring efficiency and improved coordination to the fields of ALS research and care. The ALS ONE patient network creates a direct pipeline from therapy discovery, to immediate implementation, and to patient services.

ALS ONE funds a team at MGH that is solely focused on designing new clinical trials to maximize efficiency. Through this dedicated team, ALS ONE partners are able to be proactive in designing effective trials and models that lead to greater success when applying for grants and greater efficiency in moving from concept to trial.   

By centralizing the Institutional Review Board (an entity that protects the rights of people in clinical trials), ALS ONE has accelerated the clinical trial process by an average of 7-12 months.

The MGH ALS imaging group is developing novel tools to measure the biological effect of experimental treatments in a way that can reduce the trial population from 400 to 30 patients, and the trial duration from 12 to 3 months. This added efficiency allows ALS ONE to test many more therapies quickly.

Supporting Clinical Trials

Researchers are faced with myriad challenges that make it difficult to secure necessary data and benchmarks while they work to move novel therapies forward 

ALS ONE is investing in technologies that help ease the research process and better enable patients to meet with clinicians and attend clinical trials in a safe environment. 

The NCRI at MGH serves as the coordination center for ALS ONE clinical trials, as well as the coordination and data management center for the Northeast ALS Consortium, a group of more than 100 academic centers worldwide dedicated to finding new ALS therapies.

The NCRI at MGH serves as the coordination center for ALS ONE clinical trials, as well as the coordination and data management center for the Northeast ALS Consortium, a group of more than 100 academic centers worldwide dedicated to finding new ALS therapies.

ALS ONE funds a transportation program through CCALS to provide rides for patients so they can attend clinical appointments and trials at affiliated institutions.