A Focus on Care Services
ALS United Mid-Atlantic helps patients and their families face the rigors of ALS with strength and confidence through a full range of services that not only provide essential support, but also help to ease what sometimes can become an unmanageable financial burden.
A sampling of local services provided free of charge to people and families living with ALS:
- One-on-one consultations to assess the needs of those living with ALS, suggest equipment and help families plan for the future.
- A Medical Equipment Loan Program that provides mobility equipment when insurance and other programs cannot fund needed items.
- In-home care and van transportation
- A comprehensive Alternative Communication and Assistive Technology Program.
- Monthly support groups for people with ALS, family members, caregivers and friends.
- Partnerships in ALS multidisciplinary treatment centers staffed by professionals with ALS expertise.
- Outreach to the local medical community with updates on current ALS needs and solutions.
Promising ALS Research
ALS United Mid-Atlantic continually supports global research that has resulted in some of the greatest discoveries to date, including the revelation of new genes that contribute to ALS, development of drugs that aim to slow or stop the progression of this devastating disease, and key advancements in wearable sensor and brain computer interface technology.
Our global approach to funding research serves to fuel the most promising projects by pioneering ALS scientists. The FDA announced their approval of RELYVRIO (AMX0035). The drug has been shown to slow the progression of the disease and extend life by several months. The ALS Association funded initial research and the Phase 2 clinical trial and worked with additional ALS organizations to advocate for FDA approval.
Advocating and Sharing Your Stories
Every year, ALS United Mid-Atlantic educates state and federal policymakers about issues important to people living with ALS.
Some of the notable achievements our advocacy efforts have yielded include: appropriations of nearly $1 million in combined state funding for ALS care services in Pennsylvania, New Jersey, and Delaware; recognition of ALS as a service-connected disease; and elimination of the 24-month waiting period that people with ALS had to endure before receiving Medicare benefits.