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February 2025 | Monthly eNewsletter from ALS Network

February 7, 2025 Comments Off on February 2025 | Monthly eNewsletter from ALS Network

Our February eNewsletter is in your inbox now, or you can view it online! As we move into Black History Month, we celebrate and recognize the achievements and contributions of Black individuals in our community. Join us this month for ASK ME: ALS Research and Care in 2025 and Rare Disease Day. We also invite…

15 ALS Nonprofits Collaborate to Form ALS United: A New Era of Innovation and Impact

February 6, 2025 Comments Off on 15 ALS Nonprofits Collaborate to Form ALS United: A New Era of Innovation and Impact

February 6, 2025 Following a comprehensive planning process, 15 independent nonprofit organizations from around the country have formalized ALS United, an innovative partnership dedicated to serving the ALS community. This new nonprofit membership organization is committed to serving the ALS community in a collaborative approach by providing comprehensive local care and support to individuals and…

Springer Nature Link: Racial Disparities in the Diagnosis and Prognosis of ALS Patients in the United States

February 5, 2025 Comments Off on Springer Nature Link: Racial Disparities in the Diagnosis and Prognosis of ALS Patients in the United States

Recently studies have shown ALS in the United States to be more commonly diagnosed in White males over 60 years of age. Previous epidemiologic studies addressing racial variation in ALS diagnosis and clinical characteristics have been limited. Global ALS prevalence rates vary widely ranging from 4.1 per 100,000 persons in Norway to 8.4 per 100,000…

Addressing Inequities in ALS Healthcare: The Critical Need for Diversity in Research

February 5, 2025 Comments Off on Addressing Inequities in ALS Healthcare: The Critical Need for Diversity in Research

ALS affects individuals across all backgrounds, yet representation in ALS research has long been skewed. Data reveals that approximately 95% of participants in previous ALS clinical trial studies were Caucasian, leaving other populations, particularly Black and Latino communities, significantly underrepresented. This lack of diversity in research critically impacts diagnosis, treatment, and outcomes for underserved groups.…

Running Bitcoin ALS Network

2025 Running Bitcoin Challenge

February 5, 2025 Comments Off on 2025 Running Bitcoin Challenge

The Running Bitcoin Challenge combines Hal Finney’s love of running and Bitcoin to raise funds and awareness to help end ALS, which claimed his life. Since 2021, Hal’s wife, Fran Finney, has led the challenge in his memory by encouraging participants to run, walk, hike, or roll, to complete 21.1 km/13.1 miles (Hal’s favorite distance). …

2025 ALS Network Research Summit & Barber Award Winners

February 5, 2025 Comments Off on 2025 ALS Network Research Summit & Barber Award Winners

The 15th annual ALS Network Research Summit (formerly the California ALS Research Summit) convened more than 200 researchers, investigators, clinicians, biotech companies, government representatives, partner organizations, and advocates in ALS and related fields. Held in San Francisco from January 16-18, the Summit’s 2025 theme centered on “what can we learn about ALS from other neurologic…

Celebrating Black History Month

February 4, 2025 Comments Off on Celebrating Black History Month

Our ALS community celebrates and uplifts the voices of Black individuals affected by ALS. Together, we can create a more inclusive environment in care, research, and advocacy. Throughout February we will highlight members of our community including caregivers and ALS Network team members that make a difference each and every day. Check out our social…

Celebrating the ALS Community at the 2025 Champions for Cures and Care

January 17, 2025 Comments Off on Celebrating the ALS Community at the 2025 Champions for Cures and Care

January 17, San Francisco The 2025 Champions for Cures and Care gala was a spectacular night recognizing the ALS community and our dedication to ending ALS. The event, hosted at the Hyatt Regency San Francisco, celebrated a year of impact in ALS care, advocacy, and research under the organization’s new name, the ALS Network. ALS…

January 2025 | Monthly eNewsletter from ALS Network

January 10, 2025 Comments Off on January 2025 | Monthly eNewsletter from ALS Network

Our January eNewsletter is in your inbox now, or you can view it online! This month, we celebrate our progress and achievements together Join us as we reflect on our 2024 milestones with the ALS community. We also invite YOU to our upcoming Champions For Cures and Care on Friday, January 17! Please check our…

Los Angeles Area Fire Update

January 9, 2025 Comments Off on Los Angeles Area Fire Update

Hello everyone,   As you may know, individuals and families in the Los Angeles area are experiencing devastating wildfires. Our hearts are heavy at this time of profound loss for our SoCal community.  We have maintained close communication with members of our ALS Network family, and can confirm all are currently safe and accounted for.…