We believe in supporting children.
Hope Loves Company is the only national nonprofit organization serving children impacted by ALS Lou Gehrig's Disease.
Our programs provide no-cost support, resources, and care for children ages 6-25, including family camp retreats, virtual hangouts led by mental health experts, and age-specific education to support children through their grief, loss, caregiving, and mental health journeys. Our children are equipped with healthy coping techniques, lasting connection, and a community that is hopeful.
We create space for children to build community, laugh and find respite, all while developing healthy coping techniques. Hope Loves Company brings comfort and light for youth caregivers navigating ALS in their family dynamic.
Children who are caregivers are often underserved.
A large number of children, also referred to as youth caregivers, provide care for sick and disabled siblings, loved ones and parents. Nationally there are an estimated 5.4 million young caregivers between the of 8 and 18 who shoulder considerable responsibilities, undertaking daunting tasks such as assisting with physical and emotional support, and at times, managing medical tasks like aiding with feeding tubes, managing medications, household tasks, and communicating with nurses or doctors – all while balancing educational and social commitments.
Cases of ALS are projected to increase by 2040.
While ALS continues to be a rare disease and numbers of diagnosed cases are hard to ascertain, research indicates that cases are predicted to rise by nearly 70% by 2040. This increase accounts for an increase in the United States. As the numbers of diagnosed individuals continues to rise, so does the number of children impacted by this disease and the need for the programs of Hope Loves Company.
Grief support and needs have no timeframe.
The needs of children caregivers and children impacted by ALS has no timeframe and needs evolve over time. Our programs are available to all children at the time they encounter the disease and remain in place for as long as they need us. We have youth who have come through our camp sit serve as mentors to younger youth, volunteer for our programs and sit on our board. Grief has no timeframe, no specific trajectory. We bring hope when you need us, for however long you need us.
There should be no financial barriers to support.
We believe that every family and child should have access to the same quality programs they need, when they need them, regardless of their ability to pay. To ensure access and eliminate the stigma associated with "financial aid" all programs are free to families and children and travel support is available as well.
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A diagnosis of ALS is often a financial hardship on a family, eliminating incomes for a family and as the disease progresses, places increased financial demands on the household as home modifications, equipment and care become more necessary.
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By eliminating all costs associated with our programs, we can ensure everyone has access and that the family can focus on what is most important.
Programs Full of Hope
Our flagship program provides essential in-person support, respite and community for young caregivers in camps across the nation. These weekend-long retreats are family friendly, tailored to age groups and deliver coping techniques and trauma-based programs to youth between the ages of 7-18 years old.
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In 2020 we added one virtual camp.
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Camp HLC
Responding to the needs of our ever changing community, our virtual hangouts bring our youth together for monthly age-appropriate support, community and fun. Led by qualified child life experts and therapists, the programs are rooted in self-care, coping, supporting mental health and trauma-informed programming.
Beyond the Bunk: HLC Hangouts
Young adults who were children caregivers have a unique journey as they navigate understanding their genetic risks, navigating relationships and transitioning into adulthood with a childhood that was in many ways, very different. Our Young Adult Retreat gives space to our older caregivers and allows for deeper conversations and support as they navigate pivotal moments in their lives.
Young Adult Retreat
Supporting children whom are caregivers is a difficult journey for parents who are also caregiving. Our parent groups meet virtually each month and are a place for parents to come together, learn about the programs for their children, discover other resources and find community with others who are in this journey as well.
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Parents often meet at camp as well, with specific programs designed just for their unique needs and self care.
Parent Meetups & Support Groups
An ALS diagnosis is challenging and emotional for the entire family. Often our families are overwhelmed and are seeking both immediate resources to talk to their kids about the diagnosis and ways to comfort them as well. Our Hugs of Hope packages are packages of resources, care and hugs, delivered to the door of our youngest caregivers.
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Hugs of Hope are always free.
Hugs of Hope: Care Packages
Our commitment to supporting our children extends beyond the family to the professionals that they may encounter such as school social workers, therapists and more. We strive bring education to professionals whom are in their lives and ensure they are well versed in ALS as well as the nuances of children whom are caregivers. Our ever-evolving educational series starts at ALS 101, dives into how to talk to children about ALS, provides resources about the medical devices and more. Many of our programs are eligible for continuing education credits.