ABOUT ALS
ALS has no racial, ethnic or socioeconomic boundaries and in only 10% of cases there is a familyhistory of ALS. Today, there are approximately 30,000 people in the US living with ALS and 5,600 people are diagnosed each and every year in the US.
ABOUT ALS UNITED MID-ATLANTIC
Our Mission
To unite and empower the ALS community through a collaborative approach to fostering bold research initiatives, advancing national and state advocacy, and providing comprehensive care and support to individuals and families affected by ALS.
Our Strategic Outcomes:
- Recognized interdependence between care and research.
- People with ALS and their families have:
- Access to consistent care, treatment and services
- Real people providing real help that enhances quality of life
- Quality care and support leveraged by collaboration with partners
- Discover new life-extending treatment:
- Drive worldwide research agenda with urgency and boldness to improve outcomes for people with ALS
- Collaborate with partners in a comprehensive and diverse research model
- Facilitate the rapid development of new treatment options to extend and enhance quality of life while seeking a cure.
OUR IMPACT
Care Services
ALS United Mid-Atlantic is committed to enhancing the quality of life for those living with ALS through comprehensive care programs. We understand the value of those with the disease being able to communicate, function safely in their home, and travel to ALS Treatment Centers for comprehensive evaluation and treatment. Our programs are designed to meet these essential care needs as well as the emotional needs of people living with ALS and their caregivers.
Care Services Highlights from 2023
In 2023, ALS United Mid-Atlantic delivered a wide range of care services programs to enhance the quality of life for individuals and families impacted by ALS.
- 1,440 patient visits either through telemedicine or in person at the 8 ALS Clinics.
- 25,547 hours of care delivered to 95 people with ALS through the Howard I. Abrams In-Home Care Program.
- 259 pieces of equipment such as power wheelchairs and shower chairs loaned throughout entire service area to 184 patients through the Marjorie Shimer Durable Medical Equipment Program. We helped install 48 ramps and stair glides.
- 345 Assistive Technology interventions through the Scott A. Mackler, MD, PhD Assistive Technology Program.
Research
Every aspect of our work is dedicated to advancing our mission of discovering effective treatments and ultimately eradicating ALS. This underscores the critical importance of funding exceptional ALS research.
We prioritize funding the most promising research endeavors and actively cultivate innovative partnerships spanning government, industry, academia, and other nonprofit organizations. Additionally, we invest in emerging talent, nurturing young scientists to drive innovation.
- Some of the things we're working on:
- 3 potential new ALS antisense drugs
- Key advances in wearable sensor and brain computer interface technology
- New treatment approaches in clinical trials
- Research Discoveries
Advocacy
ALS United Mid-Atlantic focuses on state and federal advocacy for research, health & long-term care, and caregiver support. The ALS community's involvement in advocacy has led to increased federal funding for ALS research at the NIH and federal funding for ALS research through the Department of Defense.
Through the power of personal testimony, ALS advocates from ALS United Mid-Atlantic have achieved significant success for the ALS cause including increased funding for care in Pennsylvania, New Jersey, and Delaware and passage of ACT for ALS.
