Resources & Support
Finding the right support after an ALS diagnosis can feel overwhelming. Services and resources vary widely by location, and many families are unsure where to begin. While ALS in the Heartland is here to support you, we also strongly encourage individuals and families to explore all available resources that may be helpful to them, not just those provided by our organization. Every journey with ALS is different, and drawing support from multiple sources can often make a meaningful difference.
Start Here: Finding Services in Your Area
Because ALS support services differ by state and community, we encourage individuals and families to begin with a resource designed to help navigate options based on specific needs and location.
Your ALS Guide offers practical tools, education, and personalized navigation support to help individuals and families affected by ALS find services, equipment, and support options in their area.
National ALS Support & Services
The following national organizations are featured through Your ALS Guide (above) and may offer support regardless of location.
- Compassionate Care ALS (CCALS) offers an innovative and holistic range of in-person and virtual services tailored to meet each family’s unique needs.
- Hope Loves Company (HLC) provides support to children and young adults affected by ALS, including in-person camps held in various states across the country.
- LiveLikeLou Foundation has volunteers throughout the U.S. and Canada who assist families affected by ALS with tasks in and around the home.
- Synapticure is a telemedicine healthcare company that provides personalized care and guidance for people living with ALS through video, phone, and email.
- Team Gleason offers grants to help individuals living with ALS access innovative technology and equipment.
Advocacy, Education & Awareness
While ALS in the Heartland does not directly conduct advocacy or research, we support efforts that increase awareness, improve education, and advance care for individuals and families affected by ALS. We remain engaged with trusted partners and organizations working toward these goals at the local, state, and national level.
- Les Turner ALS Foundation provides educational resources, webinars, live events, and up-to-date ALS research focusing on improving quality of life.
- I AM ALS offers advocacy opportunities, educational resources, and virtual support for individuals and families impacted by ALS.
- Roon is an online space where people living with ALS and caregivers share lived experiences, insights, and practical advice.
Referrals to experienced Medical Professionals
ALS in the Heartland has a good working relationship with ALS Clinics and medical professionals that specialize in ALS throughout the area and can assist individuals in accessing appropriate and needed medical services. We are fortunate to act as the social service support on a multidisciplinary team in Dr. Gary Pattee’s MDA Care Center for ALS Patients.
Interested in Connecting With Us?
If you are an organization, agency, or provider interested in connecting, collaborating, or networking with ALS in the Heartland, we would love to hear from you. Please contact us to explore partnership opportunities and ways we may support individuals and families together.
