Hugs of Hope
There are many families affected by ALS and many of those families have children. In addition to our camps, we can provide a Hug of Hope from afar. A Hug of Hope care package includes an age-appropriate gift (stuffed animal or gift card), HLC logo t-shirt, personalized handwritten notecard, edible treat, coping kit to help relieve stress and anxiety, ALS journey stage resources, and information on HLC programs and services. Each package is assembled with love and hope by caring volunteers and HLC partners. Care packages are free of charge to children across the country affected by ALS. You can receive one with the completion of this application.
Books
What Did You Learn Today? by Tina Singer Ames
Written by a person with ALS, WDYLT? gently explains ALS to younger children by following the progression of the disease, as it affects an elementary school teacher, Mrs. Meyer. Purchase the book.
The Stars that Shine by Jodi O'Donnell-Ames
Sarah has a problem. Every year, she and her father march in the Fourth of July Parade. But, this year is different. Sarah's daddy is sick and can no longer walk. To make matters worse, he relies on a wheelchair, an UGLY wheelchair. Sarah has to decide whether she will listen to her pride and break a father-daughter tradition or listen to her heart and embrace a new one. Purchase this book.
Someone I Love Has ALS by Jodi O'Donnell-Ames and contributing authors
After more than 20 years of working with ALS families, Jodi realized that more information and better resources could be available to help families who are coming to grips with the challenges of the disease and the caregiving responsibilities that are involved. "This guide was created by a variety of caregivers and professionals who have years of experience with various aspects of ALS. It was written by volunteers and experts who care about ALS and your journey," she writes. Purchase this book.
Real Kids Talk About ALS: Feeling Normal, Sad, and Different
Delivered in a graphic novel format, this book uses direct quotes from youth in the ALS research projects. These quotes help situate the learning style and experiences of children in ALS. Learn more.
Smile With Me Forever and Ever: Even with ALS
Mrs. Panda has a warm and affectionate relationship with her little cub friends. The cubs are concerned one day when they see Mrs. Panda lose her balance and tumble down. As the precious little cubs rush to help, Mrs. Panda has an important role of explaining she has ALS. Mrs. Panda carefully uses simple terms so the little cubs can understand as she describes the loss of the body’s nerves and power to the muscles. As the cubs express their fears, Mrs. Panda finds a unique way to offer encouragement through her five senses, which are not affected by ALS. Most importantly, Mrs. Panda reaffirms her loving bond with the cubs, who will share a smile forever and ever. Learn more.
The War for Gloria
A New York Times Notable Book of the Year, the novel is about Corey, a 15-year-old who lives outside Boston, and Gloria, his single mother who is diagnosed with ALS. He becomes her primary caregiver. The book poignantly illustrates the many challenges they face. Learn more.
Podcasts
ALS Pathways Podcast Series. Educational series for those who have been newly diagnosed with ALS. Provided by ALS Pathways, each 10-minute episode delves into the world of ALS, the science behind it, how to prepare for and manage symptoms, and how best to help as a caregiver. You can subscribe to the series through iTunes or Google Play.
ALS: The Basics offers an introduction to the disease and the history and science behind it. It also covers the different groups of ALS symptoms and explains the tests used to track and monitor the disease's progression.
Managing ALS covers important strategies that ALS sufferers can use to help navigate the disease, including the importance of working with a multidisciplinary care team and tips for managing common symptoms.
Life as a Caregiver talks about caring for a loved one throughout their ALS journey and helps caregivers learn to care for themselves.
Movies
Hope Loves Company Documentary: The documentary, directed by award-winning documentarian Steve Besserman, begins with the founding of HLC and follows some of the families we have supported. The film is available to stream on our HLC YouTube Channel.
Hope For Steve Documentary: This young couple's triumphant love story while battling the husband's devastating diagnosis of ALS is growing across the nation.
Hope on the Horizon: The 48 highest peaks in the White Mountains of New Hampshire, also known as the “4,000 footers”, cover over 250 miles of various terrain and over 70,000 feet of elevation. Four hikers, including the filmmaker, set out to summit all 48 in a single trip on foot. Two completed the journey and reached the 48th summit in 24 days to raise awareness and funding for ALS patients and their families. See more here.
I am Breathing: Knowing he only has a few months left to live, and while he still has the ability to speak, Neil Platt puts together a letter and memory box for his baby son, Oscar, and communicates his experience and thoughts about life in a blog – and in this film, which he was determined to make.
The Theory of Everything: In the 1960s, Cambridge University student and future physicist Stephen Hawking (Eddie Redmayne) falls in love with fellow collegian Jane Wilde (Felicity Jones). At 21, Hawking learns that he has motor neuron disease (MND). Despite this, and with Jane at his side, he begins an ambitious study of time, of which he has very little left.
Too Much So Fast: A documentary written and directed by Academy Award nominees, Steven Ascher and Jeanne Jordan. This film premiered in competition at the 2006 Sundance Film Festival, and won the Audience Award at the Boston Independent Film Festival.
TransFatty Lives: A film by and about Patrick Sean O'Brien, who lives with ALS which debuted at Tribeca Film Festival 2015.
You’re Not You: An American drama, starring Hilary Swank, centered on a classical pianist who has been diagnosed with ALS and the brash college student who becomes her caregiver.
Gleason: The hit documentary from the 2016 Sundance Film Festival goes inside the life of Steve Gleason, the former New Orleans Saints defensive back who, at the age of 34, was diagnosed with ALS and given a life expectancy of two to five years. Weeks later, Gleason found out his wife, Michel, was expecting their first child.
Organizations
The ALS Association: The ALS Association is the only national ALS non-profit organization. They are a leader in research, care services, public education, and public policy. See more here.
The ALS Clinic at Upstate is part of the ALS Association's national network of Certified Treatment Centers of Excellence in Clinical Care and Research. The Center is nationally recognized for its research into possible treatments for ALS, and patients are given the opportunity to participate in a variety of clinical trials. See more here.
ALS Family of Faith: The ALS Family of Faith was created to provide Christ-centered love and support to those facing this unimaginable life change. Whether you are a caregiver, a family member or you have personally received an ALS diagnosis, this service is free. You are connected with a
trained care-partner who will walk with you through the duration of your journey to listen, pray, and be a sounding board as frequently as needed. See more here.The ALS Hope Foundation: The ALS Hope Foundation provides funding for the MDA/ALS Center of Hope, the first multidisciplinary ALS clinic in the country, and the Neuromuscular Research Laboratory at Drexel University College of Medicine. The Foundation also provides educational events to inform people living with ALS and the public about ALS. See more here.
ALS Research and Treatment Center: The ALS Research and Treatment Center provides comprehensive, multidisciplinary care for patients with ALS and related motor neuron diseases. The clinic team consists of ALS specialized doctors, ALS researchers, nurse, clinic coordinator/social worker, dietician, respiratory therapist, physical therapist, occupational therapist, speech language pathologist, spiritual palliative care, and representatives from MDA and ALS association.
ALS Therapy Development Institute: The ALS Therapy Development Institute and it's scientists actively discover and develop treatments for ALS. See more here.
Brigance Brigade: The Brigance Brigade Foundation’s mission is to equip, encourage, and empower people living with ALS. We strive to improve the quality of life for patients and their families by providing access to needed equipment, resource guidance and support services. See more here.
Christopher and Dana Reeve Paralysis Resource Foundation: The Christopher & Dana Reeve Foundation is dedicated to curing spinal cord injury by funding innovative research, and improving the quality of life for people living with paralysis through grants, information and advocacy. See more here.
Compassionate Care ALS (CCALS): A non-profit organization with a mission to support people diagnosed with ALS, their families and communities as they navigate the complexities, both physical and emotional, associated with the disease. The organization provides resources including equipment, educational workshops, Medicare/Medicaid assistance, guidance and awareness in living with ALS, caregiving, and end-of-life issues. See more here.
Elizabeth Dole Foundation: The Elizabeth Dole Foundation was founded with the mission to strengthen and empower America’s military caregivers and their families by raising public awareness, driving research, championing policy, and leading collaborations that make a significant impact on their lives. See more here.
Eluna: The mission of Eluna is to support children and families impacted by grief and addiction. See more here.
HARK: HARK is an active ALS charity organization that was founded by Donna Dourney York in memory of her father, Charles W. Dourney, who was affectionately known as “Hark” by his wife Ann. See more here.
Help Hope Live: The mission of Help Hope Live is to support community-based fundraising for people with unmet medical and related expenses due to cell and organ transplants or catastrophic injuries or illnesses. Help Hope Live supports many families affected by ALS. See more here.
I AM ALS: Nonprofit created for and by people impacted by ALS. I AM ALS provides critical support and resources to people living with ALS, caregivers and loved ones. They also empower advocates to raise awareness and lead the movement against ALS in driving the development of cures. See more here.
International Alliance of ALS/MND: The International Alliance of ALS/MND Associations was founded in 1992 to provide an international community for individual ALS/MND associations from around the world. See more here.
Joan Dancy and pALs Foundation is dedicated to improving the quality of life of people with ALS and their families in central New Jersey. They provide support, guidance and assistance to help them live with the dignity they deserve. See more here.
Kevin Turner Foundation: The Kevin Turner Foundation (KTF) was created to bring attention to ALS and sports-related traumatic brain injuries. See more here.
Les Turner ALS Foundation: Since 1977, the Les Turner ALS Foundation has been Chicago's leader in patient services, research, and education for Amyotrophic Lateral Sclerosis. See more here.
Live Like Lou Foundation: The Live Like Lou Foundation’s mission is to create and connect communities to stimulate emerging ALS research and uniquely support families affected by Lou Gehrig’s disease. Programs supporting ALS families include one-time and short-term service in and around the home, Iron Horse Scholarships for dependents of people living with ALS, and home improvement grants. See more here.
MAC Angels Foundation: The mission of MA is to enhance the quality of life of patients, family members and caregivers impacted by ALS. See more here.
MDA: The Muscular Dystrophy Association is the world’s leading nonprofit health agency dedicated to finding treatments and cures for muscular dystrophy, amyotrophic lateral sclerosis (ALS). See more here.
OPTION B: HLC is an independent member of the Option B Group Directory, and we abide by these community guidelines. See more here.
Synapticure: Synapticure brings personalized care online and to your home. It was built by and for those living with ALS, alongside leading ALS clinicians, to transform care for all people living with ALS. Check here for the provider directory.
Team Gleason: Steve and his friends and family started Team Gleason to generate public awareness for ALS, raise funding to empower those with ALS to live a rewarding life, and ultimately find a cure. See more here.
Your ALS Guide: Your ALS Guide is an educational website that supports people living with ALS, caregivers, family, and friends. You can find trusted information, practical tips, helpful resources, and video clips on their website. See more here.
Scholarships
Iron Horse Scholarships: The Iron Horse Scholarships are from Live Like Lou. They support dependents of individuals with ALS with financial grants for their post-secondary educational goals, before or within five years of their loved-one’s death from ALS. Find out more here.
LIFE Lessons Essay Contest for Students: The Life and Health Insurance Foundation for Education is sponsoring a scholarship for college-bound high school seniors and current college students, ages 17-24, who have suffered the death of a parent or guardian. Applicants must submit a written essay or a short video essay about how the loss affected them emotionally and financially. The contest will open in February 2019 with a deadline of early March 2019. To learn more, visit their website.
Speaking
Jodi O'Donnell-Ames likes to share her journey of living a life with purpose with people all around the U.S and beyond. Her journey began in 1995, when her late husband Kevin O'Donnell (then 30 years old) received his ALS diagnosis. Life for Kevin, Jodi and their toddler daughter Alina changed drastically on that day. Jodi shares how Kevin's life and his enormous courage and strength made her a better person. She is now using that experience of love and determination to help children and young adults around the country.
Jodi has three presentations to share with your community or school: Living With Purpose, Founding a Nonprofit, and The Joy of Volunteerism. To learn more about having Jodi speak at your event, email jodi.odonnell-ames@hopelovescompany.org or call 609-730-1144.
