The ALS PACT program has been made possible through support from the EGL Charitable Foundation.

Explore This Program

    Overview

    Consistent with the family-based approach at the Healey & AMG Center for ALS, the Daniella Lipper ALS PACT Program provides information to parents and grandparents with ALS, and to their co-parents about how to support their children’s (infants through young adults) resilient coping.

    We recognize that parents are the experts on their own children and families. Our child psychologists work collaboratively with parents to identify children’s unique strengths and needs, to plan how to talk about the parent’s medical condition over time, to anticipate how children may adjust to changes in the parent, and to know when to feel comfortable with a child’s coping and when to consider additional resources or interventions. Most conversations take place on the telephone or a video call.

    The service is available at no charge to patients receiving care at the Healey Center for ALS, thanks to generous support from the EGL Charitable Foundation.

    The ALS PACT program has benefitted enormously from the experience and mentorship of the Founding Director of the Marjorie E. Korff PACT Program at the Mass General Cancer Center, Paula Rauch, MD.

    Parenting with ALS: Guidance for Supporting your Children (Crianza con ALS: Orientación para apoyar a sus hijos)

    Thanks to generous support from a “WE CARE” grant from the ALS Finding a Cure Foundation, the ALS PACT Program has developed a suite of written materials for parents or grandparents of children ages birth – 25 years, for multidisciplinary ALS clinicians, and for mental health clinicians.

    For Parents and Grandparents

    This series of 14 handouts aims to support parents and grandparents with ALS and their co-parents (or any other adults consistently caring for children), to improve their children’s coping and resilience in response to a variety of ALS-related challenges. All materials are available for download or for printing, in both English and Spanish for free.

    Supporting children’s emotional well-being: Child development and resilience (Apoyo del bienestar emocional de los niños: desarrollo infantil y resiliencia)

    Supporting children’s emotional well-being: Child development and resilience (Apoyo del bienestar emocional de los niños: desarrollo infantil y resiliencia) describes the ALS PACT Program parent guidance model, and factors that can support children’s emotional well-being and resilient coping with medical illness in a parent or grandparent.

    English (PDF) Español (PDF)

    Communication with children about a parent’s ALS diagnosis (Comunicación con los niños sobre el diagnóstico de ALS de uno de los padres)

    Communication with children about a parent’s ALS diagnosis (Comunicación con los niños sobre el diagnóstico de ALS de uno de los padres) provides reasons for talking honestly with children about ALS and concrete ideas for a first conversation, for explaining ALS to children at different developmental stages, for communicating with children’s schools and with the family’s broader support network.

    English (PDF) Español (PDF)

    Communication about pseudo-bulbar affect (PBA) and frontotemporal dementia (FTD) (Comunicación sobre el síndrome pseudobulbar (PBA, por sus siglas en inglés) y la demencia frontotemporal (DFT))

    Communication about pseudo-bulbar affect (PBA) and frontotemporal dementia (FTD) (Comunicación sobre el síndrome pseudobulbar (PBA, por sus siglas en inglés) y la demencia frontotemporal (DFT)) provides a brief summary of symptoms of PBA and FTD, and suggestions for explaining both of these conditions to children and for exploring the emotional impact on children of living with a parent with PBA or FTD.

    English (PDF) Español (PDF)

    Genetic subtype of ALS (Subtipo genético de ALS)

    Genetic subtype of ALS (Subtipo genético de ALS) focuses on common concerns about supporting children when a parent has a genetic subtype of ALS.

    English (PDF) Español (PDF)

    Changes in Motor Skills and Mobility (Cambios en las habilidades motoras y la movilidad)

    Changes in Motor Skills and Mobility (Cambios en las habilidades motoras y la movilidad) discusses children’s typical concerns related to changes in mobility, potential ways for the parent to talk about and manage the changes with children of different ages, and ways to check in with a child who has witnessed a parent’s fall.

    English (PDF) Español (PDF)

    Bulbar symptoms: Speech, swallow, salivation and eating (Síntomas bulbares: habla, deglución, salivación y alimentación)

    Bulbar symptoms: Speech, swallow, salivation and eating (Síntomas bulbares: habla, deglución, salivación y alimentación) offers explanations of bulbar symptoms and g-tube use for children of different ages, and ideas for preparing children for a parent’s use of augmentative communication devices, and for talking about episodes of choking.

    English (PDF) Español (PDF)

    Breathing difficulties: Using a BiPap machine (Dificultades respiratorias: uso de máquina BiPAP)

    Breathing difficulties: Using a BiPap machine (Dificultades respiratorias: uso de máquina BiPAP) describes ways that children may notice or experience a parent’s breathing difficulties, and suggests explanations for the BiPAP machine.

    English (PDF) Español (PDF)

    Breathing difficulties: Having a Tracheotomy (Dificultades respiratorias: tener una traqueotomía)

    Breathing difficulties: Having a Tracheotomy (Dificultades respiratorias: tener una traqueotomía) describes an endotracheal tube, tracheostomy, and tracheostomy care and offers guidance for talking about a tracheotomy with children of different ages.

    English (PDF) Español (PDF)

    Including children in caring for a parent (Incluir a los niños en el cuidado de un padre)

    Including children in caring for a parent (Incluir a los niños en el cuidado de un padre) offers ideas for finding age-appropriate ways for children be involved in caring for someone with ALS and preparing them to do so, and discusses why certain kinds of tasks are usually better completed by an adult.

    English (PDF) Español (PDF)

    Talking to children about an imminent loss (Hablar con los niños sobre una pérdida inminente)

    Talking to children about an imminent loss (Hablar con los niños sobre una pérdida inminente) focuses on communication and offers reasons and concrete suggestions for starting a conversation about an anticipated death.

    English (PDF) Español (PDF)

    Supporting children through the end of someone’s life (Apoyar a los niños hasta el final de la vida de una persona)

    Supporting children through the end of someone’s life (Apoyar a los niños hasta el final de la vida de una persona) describes physical changes that may signal that someone is nearing end of life and services or interventions that may be offered, and offers ideas about when to talk about these changes with children.

    English (PDF) Español (PDF)

    Legacy leaving (Legado de una pérdida)

    Legacy leaving (Legado de una pérdida) describes what is meant by legacy leaving and offers examples, and notes some ways that particular types of legacies may cause unintended distress for children.

    English (PDF) Español (PDF)

    Bereavement (Duelo)

    Bereavement (Duelo) offers psycho-education about grief that parents can share with children, age-specific strategies for supporting grieving children and a list of resources that provide further information about children’s grief.

    English (PDF) Español (PDF)

    Seeking professional mental health support for your child (Buscar apoyo profesional de salud mental para su hijo)

    Seeking professional mental health support for your child (Buscar apoyo profesional de salud mental para su hijo) discusses signs that a child might benefit from mental health assessment and support, suggests ways to access care and what to look for in a therapist, and provides information about the different types of mental health therapists.

    English (PDF) Español (PDF)

    For Multidisciplinary ALS Clinicians

    Introduction to “Parenting with ALS: Guidance for Supporting your Children” for ALS Multidisciplinary Clinic Team members (Introducción a la "Crianza con ALS: orientación para apoyar a sus hijos" para los miembros del equipo de la Clínica Multidisciplinaria de ALS)
    Introduction to “Parenting with ALS: Guidance for Supporting your Children” for ALS Multidisciplinary Clinic Team members (Introducción a la "Crianza con ALS: orientación para apoyar a sus hijos" para los miembros del equipo de la Clínica Multidisciplinaria de ALS) offers a brief summary of the 14 parent guidance handouts, along with ideas for how providers might consider asking about, and addressing, the kinds of parenting concerns that frequently arise during clinic visits.

    English (PDF) Español (PDF)

    For Mental Health Clinicians

    The Basics of ALS for Mental Health Clinicians (Aspectos básicos de la ALS para especialistas de salud mental)
    The Basics of ALS for Mental Health Clinicians (Aspectos básicos de la ALS para especialistas de salud mental) provides an overview of the physical and medical aspects of living with ALS. It includes sections on the diagnostic workup process, ALS symptoms, clinical course and prognosis, genetic forms of ALS, treatments for ALS, challenges and interventions related to mobility, speech, swallowing, eating and breathing, and palliative and hospice care.

    English (PDF) Español (PDF)

    Patient & Family Resources

    Our patient and family resources can help you understand and manage life with ALS.

    Learn More