Because if you
live with ALS,
so does
your family.
BOOKS
The Stars that Shine, Jodi O'Donnell-Ames
Sarah has a problem. Every year she and her father march in the Fourth of July Parade. 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 the book here.
What Did You Learn Today?, 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 here.
Someone I Love Has ALS, Jodi O'Donnell-Ames
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 the book here.
MOVIES/DOCUMENTARIES
Hope For Steve Documentary about a 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 “4000 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. www.hark-als.org/hope-on-the-horizon.html
I am Breathing Scottish documentary and winner of a British Academy Scotland Award for Best Director.
The Theory of Everything Based on the story of Stephen Hawking, winner of the Academy Award for Best Actor.
Too Much So Fast is 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.www.transfattylives.com
You’re Not You 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.
The ALS Association: The ALS Association is the only national ALS non-profit organization and the a leader in research, care services, public education, and public policy. alsa.org
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 research.alshf.org
A.L.S. Family Charitable Foundation: The A.L.S. Family Charitable Foundation was started in 2001 in hopes of creating a brighter future for those living with A.L.S. in New England. alsfamily.org
ALS Therapy Development Institute: The ALS Therapy Development Institute and its scientists actively discover and develop treatments for ALS. alstdi.org
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. brigancebrigade.org
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. christopherreeve.org
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. hark-als.org
Kevin Turner Foundation: The Kevin Turner Foundation (KTF) was created to bring attention to ALS and sports-related traumatic brain injuries. kevinturnerfoundation.org
Les Turner ALS Foundation: Since 1977, the Les Turner ALS Foundation has been Chicagoland's leader in patient services, research, and education for Amyotrophic Lateral Sclerosis. lesturnerals.org
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. alsmndalliance.org
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). mda.org
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. teamgleason.org