The toll that ALS takes on a family is devastating – and can strain a family emotionally, physically and financially. The ALS Association helps ease the physical, emotional and financial burdens that often accompany an ALS diagnosis by providing free programs and services to help people with ALS and their loved ones manage this journey. We also have an extensive referral network and can help identify additional support within the community.
The following organizations may be able to provide additional resources to families in need of assistance and guidance:
Easy to use speech and communication application for the iPad. Offers a 30 day trial.
Friends of Pam Scholarship Fund
The Friends of Pam Scholarship Fund provides up to $5,000 in awards/scholarships for children of people with ALS.
Family Hire provides a safe and efficient way for families to interview, choose and employ caregivers directly for their loved one. This innovative approach to in-home care empowers families to make the choices that best fit their needs, preferences and budget.
Association for Fronto Temporal Degeneration
Offering support programs for patients and caregivers of those living with FTD as well as research opportunities.
International Ventilator Users Network
Dedicated to enhancing the lives and independence of users of home mechanical ventilation.
The Dream Foundation
Grants wishes to terminally ill adults with a life expectancy of one year or less and whose limited resources leave them unable to realize such dreams for themselves on their own.
Hope Loves Company Kid’s Camp
Hope Loves Company sponsors free three-day overnight retreats for children and young adults affected by ALS.
National Education for Service Assistance Dogs
Provides detailed information on how dogs are being trained to assist individuals with all activities of daily living.
Helps individuals with neuromuscular diseases or injuries receive leading edge technology and equipment.
The Message Bank
A joint project between Boston Children’s Hospital and Tobii Dynavox with a goal of providing a free and open message bank resource for people at risk of losing their voice.
The UCP Ramp Up Foundation provides grants to low income individuals with disabilities living in a single family home in the state of Illinois. Income limits apply. Funds are used to build ramps, lifts accessible bathrooms and kitchens, door widening, elevators, stair
United Special Sportsman Alliance
An all-volunteer 501(c)(3) non-profit wish granting charity that specializes in sending critically ill and disabled youth and disabled veterans on a free outdoor adventure of their dreams.
United Way 211
A nationwide information and referral line, offering access to over 40,000 resources.
A free online tool to help people through every step of the message banking process to record their voice, which can then be transferred to speech generating devices or to a text to speech app that plays audio files.
Visit www.alsa-stl.org for more information and resources on ALS.