Professional Training & Resources

Professionals—educators, healthcare providers, social workers, and community leaders—play a vital role in recognizing and supporting young caregivers.

Schools and ALS/MND

At School: A Guide to Supporting Students Who Have Been Affected by ALS

A resource designed specifically for school staff, providing practical guidance and emotional support strategies to assist students navigating the challenges of having ALS impact their lives.

English

Research for Professionals Supporting Young Caregivers

we prioritize equipping professionals with research-backed insights to effectively support young caregivers. Our studies delve into the unique challenges these caregivers face, informing the development of evidence-based interventions and resources. By integrating this knowledge into your practice, you can enhance the well-being of young caregivers and the families they assist.

Professionals

How to break the news in amyotrophic lateral sclerosis/motor neuron disease: practical guidelines from experts

Amyotrophic Lateral Sclerosis and Frontotemporal Degeneration

Global Research

Application of the UN Convention on Rights of the Child to young carers in the United States: US policies in international context.

Child Abuse Research: A South African Journal

Scoping Review

Unacknowledged Caregivers: A Scoping Review of Research on Caregiving Youth in the United States

Adolescent Research Review

Professional Events

CSU Shiley Haynes Institute for Palliative Care’s National Symposium - YCare in Military Connected and Veteran community

June 2-3 - CSU Shiley Haynes Institute for Palliative Care’s National Symposium

Workshop - Exploring Caregiving Skills, Activities, and Needs of Children and Youth as Caregivers: Military-Connected & Veteran Hidden Helpers
Location - California State University San Marcos

This interactive workshop engages participants though research and programs addressing children and youth as caregivers, “hidden helpers.” Utilizing hands-on activities, participants will be guided through research-based activities, including:

1) the hidden helper caregiving activity book, and;

2) YCare, caregiving skills program. Participants will apply research findings and learn about the care needs and skills required for care for wounded, ill or injured family members, through immersion in the YCare program.

Participants will see how children and youth are guided through care skills by area and need, including basic care, speech and communication, and assistive devices – in a peer engaged setting.

Strategies and Interventions to Strengthen Support for Family Caregiving and to Alleviate Caregiver Burden - National Academics of Science and Engineering

June 5-6, 2025 - Strategies and Interventions to Strengthen Support for Family Caregiving and to Alleviate Caregiver Burden - National Academics of Science and Engineering
Location - Washington DC
Event addresses the growing burden on family caregivers of individuals with serious illnesses, offering evidence-based interventions and strategies to mitigate physical, mental, and financial challenges, with both in-person and virtual attendance options.
Event Website

Family Events

ALS YCare in Madison, WI*

ALS Spanish YCare in Dallas, TX*

Professional Training for Health care Providers: How to talk to families about ALS/MND

Grounded in research and shaped by real-world experience, our materials are designed to help you better understand the challenges young caregivers face and how to meet their needs with compassion, cultural sensitivity, and confidence. Together, we can build stronger systems of care and support for the next generation.

More Coming Soon!!!!!

SUPPORT CHILDREN AND YOUTH - ACROSS THE GLOBE, ACROSS NEUROLOGICAL DISORDERS