Our Impact

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 is committed to 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.

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.

1,200

Patients served, on average, each year

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.

Our services include coverage of home visits by professional caregivers, as well as provision of necessary medical equipment and assistive technology, devices that improve accessibility around the home, and transportation to medical appointments and ALS United Mid-Atlantic events in vans outfitted to accommodate power wheelchairs. Additionally, patients and their families can take advantage of a wide variety of educational and recreational programs run by ALS United Mid-Atlantic.

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.

25,547

Hours of care delivered to 95 people with ALS through the Howard I. Abrams In-Home Care Program

$12.2M

Invested in ALS Research

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

Advocacy

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.

$100M

Will be invested over 5 years for ALS Research

Where Are Your Donations Going?

1,440

Patient visits either through telemedicine or in person at the
8 ALS Clinics 

162

Active research projects worldwide

124

Support/resource groups offered for patients, family members, and/or caregivers

259

Pieces of equipment such as power wheelchairs and shower chairs loaned through the Marjorie Shimer Durable Medical Equipment Program

25,547

Hours of care delivered to 95 people with ALS through the Howard I. Abrams In-Home Care Program  

345

Assistive Technology interventions through the Scott A. Mackler, MD, PhD Assistive Technology Program