2024 ALS United Walk - where the money goes

People living with ALS and their families come first in everything we do, and everything we do supports the search for effective treatments and cures for ALS.

ALS United Mid-Atlantic exists to ensure that anyone facing ALS has someone to turn to for expert advice, essential equipment and support, community, caring conversations, and so much more. Now and always, we remain committed to meeting the needs of individuals and families facing ALS that we serve in eastern and central Pennsylvania, central and southern New Jersey, and all of Delaware.

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.

In early 2023, the FDA approved another treatment for ALS, Qalsody (tofersen), which is designed to treat people with the SOD1 gene mutation.

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.