More Than Medicine: How Social Determinants Impact ALS Care by Olivia

Transportation

silva2001olivia — 2025-06-01 23:34:51 UTC

Transportation challenges can limit ALS patients’ access to medical care, social activities, and independence. Purchasing wheelchair assessable vans are costly and often require custom modifications.

CCALS provides a van program to allow patients with ALS accessible and adequate transportation.
Providing wheelchair assessable vans for families to transport to appointments and leisure activities.

Resource:

“Programs.” Compassionate Care ALS, 23 May 2025, ccals.org/programs/.

Reference:

Knoche, Cynthia. “FYI: Driving Challenges with ALS.” The ALS Association, 9 June 2020, www.als.org/navigating-als/resources/fyi-driving-challenges-als.

Support groups

silva2001olivia — 2025-06-01 23:45:24 UTC

Patients and caregivers go through many life changes which can affect their emotional well-being. As the disease progresses, patients and families lives are altered. At this time support groups are important to provide help, resources and a sense of community.

The ALS association provides support groups for patients, family members and friends.
Providing nationwide connections through zoom meetings that provide a safe space with helpful and constructive feedback
Local support groups working with families in person or virtual for education, support and to provide resources.

Resource:

“ALS Support Groups.” The ALS Association, www.als.org/support/support-groups. Accessed 1 June 2025.

Reference:

Gerritzen, Esther Vera, et al. “Online Peer Support for People with Amyotrophic Lateral Sclerosis (ALS): A Narrative Synthesis Systematic Review.” Frontiers in Digital Health, U.S. National Library of Medicine, 31 Jan. 2024, pmc.ncbi.nlm.nih.gov/articles/PMC10864493/.

Assistive Devices

silva2001olivia — 2025-06-01 23:56:44 UTC

Assistive devices are crucial for individuals with ALS, particularly as the disease advances and mobility and communication become increasingly limited. These devices help maintain independence and improve quality of life. However, the financial burden can be significant as patients need multiple devices over time.

CCAL provides patients with new and donated equipment in which they refurbish due to the limited mobility and progressiveness of the disease.
Offering wheelchairs, ramps, bath chairs, mattresses, voice amplifiers, speech augmentative equipment and communication board.
The counsel of aging is a community based organization in towns and cities across the nation that provides free equipment like walkers, wheelchairs, etc for short and long term use.

Resource:

“Programs.” Compassionate Care ALS, 23 May 2025, ccals.org/programs/.
“Stay Connected and Access Exclusive Member Resources!” Massachusetts Councils on Aging, mcoaonline.org/. Accessed 1 June 2025.

Reference:

“Assistive Technology.” The ALS Association, www.als.org/navigating-als/living-with-als/therapies-care/assistive-technology. Accessed 1 June 2025.

Grants and Funding

silva2001olivia — 2025-06-02 00:07:44 UTC

The expenses associated with transportation, healthcare, nutrition, and providing proper care for ALS patients can be overwhelming. Grants and financial assistance help ease this burden by offering much needed relief and support.

The Hoffman ALS Financial Assistance Program provides ALS patients with access to multidisciplinary care by reducing financial barriers.
Providing grants for transportation, hotels or lost wages.

Resource:

“The Hoffman ALS Financial Assistance Program.” The ALS Association, www.als.org/hugh-and-herbert-hoffman-als-impact-fund/hoffman-als-financial-assistance-program. Accessed 1 June 2025.

Reference:

Schönfelder, Erik, et al. “Costs of Illness in Amyotrophic Lateral Sclerosis (ALS): A Cross-Sectional Survey in Germany.” Orphanet Journal of Rare Diseases, U.S. National Library of Medicine, 12 June 2020, pmc.ncbi.nlm.nih.gov/articles/PMC7291655/.

Food and Nutrition expenses

silva2001olivia — 2025-06-02 00:24:01 UTC

Adequate nutrition is important for ALS patients because it helps maintain muscle strength, energy levels, and overall health. As the disease progresses, difficulty swallowing and weight loss can lead to malnutrition, which can worsen symptoms and reduce quality of life. Maintaining proper nutrition can be costly, especially when specialized diets or feeding tubes are required.

Les Turner ALS Foundation provides grants that influences coverage for feeding tubes to patients who attend specific ALS clinics.
The Hoffman ALS Financial Assistance Program provides up to 1,000 to cover expenses related to multidisciplinary care which includes meals.
Project Main Street Financial Help Fund provides assistance to low-income and middle income patients and families affected by ALS.

Resources:

“ALS Financial Support and Benefits • Les Turner ALS Foundation.” Les Turner ALS Foundation, 23 Jan. 2025, lesturnerals.org/support-services/grant-programs-equipment-loans/.
“Home - Project Main St.” Project Main St - Where Neighbors Help Neighbors, One Benefit at a Time, 30 May 2024, projectmainst.org/.
“The Hoffman ALS Financial Assistance Program.” The ALS Association, www.als.org/hugh-and-herbert-hoffman-als-impact-fund/hoffman-als-financial-assistance-program. Accessed 1 June 2025.

Reference:

“Als & Nutrition.” Les Turner ALS Foundation, 25 June 2024, lesturnerals.org/als-nutrition-guide/.