We thought it may be helpful to create a resource page that our followers could come to with an ever-growing source of helpful web pages. As we continue to post more content and as we learn more about what organizations and how they can benefit our readers we will add to it. Please feel free to comment below with your suggestions and recommendations.
The National Institute of Neurological Disorders and Stroke is a great resource with far more conditions and disabilities than I am able to list. If you do not see something that you are looking for here, they may be of help.
Traumatic Brain Injury
I wanted to direct everyone first to their amazing resource directory with over 500 state and federal organizations dedicated to TBI support and treatment. This website is also packed with some of the latest and greatest in TBI recovery and treatment. They have information for people that have suffered a TBI, caregivers, and providers. A very good resource indeed.
- Brain Injury Association of America
The Brain Injury Association of America is the oldest and largest Brain Injury Association in America. It offers a great way to get plugged into the local community for support and involvement. To find BIA in your state simply go to this page and click on the state you live in.
- The Journey Home – the CEMM Traumatic Brain Injury
The Journey Home – the CEMM Traumatic Brain Injury (TBI) web site offers interactive brain models with tons of learning tools. They also have videos and educational seminars available for individuals as well as caregivers.
- National Institute of Neurological Disorders and Stroke
Yet another great resource for Traumatic Brain Injury survivors with great information and an active resource to engage and get involved in.
- American Veterans with Brain Injuries
A resource specifically for our veterans who have acquired traumatic brain injuries. The website also has plenty of information for family members and caregivers as well.
- Brain Trauma Foundation
The Brain Trauma Foundation is a leader in research and pioneering evidence-based practice in TBI recovery and management.
- Brain Injury Resource Center
The Brain Injury Resource is another great resource and learning web page.
- Adventures in Brain Injury Blog
Adventures in Brain Injury is an online resource for health, recovery, and community created by severe traumatic brain injury survivor, Cavin Balaster.
- My Child at CerebralPalsy.org
A web page dedicated to empowering parents and caregivers with knowledge of different organizations and resources to help advocate for children with CP. The website is run by attorney Kenneth Stern.
- United Cerebral Palsy or UCP
UCP educates, advocates and provides support services to ensure a life without limits for people with a spectrum of disabilities. UCP works to advance the independence, productivity and full citizenship of people with disabilities through an affiliate network that has helped millions.
- CP Family Network
The CP Family Network mission is to:
1. Provide information to all cerebral palsy families about diagnosis, treatments, and resources for their child.
2. Provide information and legal resources to families that suspect a preventable birth injury may have caused their child’s CP.
- Cerebral Palsy Foundation: CPF
The Cerebral Palsy Foundation is transforming lives for people with cerebral palsy today – through research, innovation, and collaboration.
- Cerebral Palsy Research Registry (CPRR)
Cerebral Palsy Research Registry (CPRR) is a multi-institutional collaborative effort whose primary mission is to improve our understanding of cerebral palsy. We believe that by working together, families and researchers can make a difference in the lives of people affected by cerebral palsy.
Recently profiled in the New York Times, Aaronverse is a Tumblr blog where Aaron Philip writes about his life dealing with his disability, and how it makes things different for him. He also posts drawings, Frederator things, Pusheen stuff, Adventure Time and anything interesting.
- Parkinson’s Disease Foundation
Are you looking for resources to help you live well with Parkinson’s disease? Search the Parkinson’s Disease Resource List, the first of its kind in the community. It includes more than 750 resources (books, organizations, and websites) that may help address matters such as employment, insurance issues, financial assistance and more.
- Michael J. Fox Foundation
The Michael J. Fox Foundation is dedicated to finding a cure for Parkinson’s disease through an aggressively funded research agenda and to ensuring the development of improved therapies for those living with Parkinson’s today.
- American Parkinson Disease Association
American Parkinson Disease Association helping people with Parkinson’s since 1961 Nationwide Parkinson’s network provides information, education, support groups, health and wellness programs. Funds promising scientific research into the causes, prevention, treatments and ultimately the cure.
- National Parkinsons Foundation
We make life better for people with Parkinson’s through expert care and research. Everything we do helps people enjoy life with friends, families, children, and grandchildren until there is a tomorrow without Parkinson’s.
- Parkinson’s Action Network
The Parkinson’s Action Network (PAN) is the unified voice of the Parkinson’s community advocating for better treatments and a cure.
- The Parkinson Alliance
The Parkinson Alliance is a non-profit fundraising organization whose sole mission is to raise money for the best Parkinson’s Disease researchers doing the most promising research.
- National Multiple Sclerosis Society
The National MS Society is united in our collective power to do something about MS now and end this disease forever.
- Multiple Sclerosis Association of America
The Multiple Sclerosis Association of America (MSAA) is a leading resource for the entire MS community, improving lives today through vital services and support.
- MS Foundation for Women
The Ms. Foundation for Women is a nonprofit foundation building women’s collective power for social, economic and reproductive justice.
- Multiple Sclerosis Foundation
The Multiple Sclerosis Foundation provides a comprehensive approach to helping people with MS maintain their health and well-being.
- A Short in the Cord – Blog
Multiple Sclerosis is a chronic disease that affects the brain, spinal cord, and optic nerves. The protective cover around nerves gets worn away, causing a disruption in the electrical impulses. In other words, some nerves have shorted out. This blog is my way of trying to reconnect the frayed wires of my life.
- Muscular Dystrophy Association
MDA is the nonprofit health agency dedicated to curing muscular dystrophy, ALS and related diseases by funding worldwide research.
- Cure CMD
Cure CMD’s mission is to advance research for treatments and a cure for the Congenital Muscular Dystrophies. Cure CMD will also improve the lives of those living with CMD through engagement and support of our community.
- Myotonic Dystrophy Foundation
The Myotonic Dystrophy Foundation (MDF) is the world’s largest patient organization focused solely on myotonic dystrophy. Our mission, “Care and a Cure,” is to enhance the quality of life of people living with myotonic dystrophy (DM) and advance research focused on treatments and a cure.
- FSH Society
The FSH Society is a nonprofit, patient-driven organization supporting research and education for facioscapulohumeral muscular dystrophy (FSHD), one of the most prevalent forms of muscular dystrophy.
- Jain Foundation
The Jain Foundation is a non-profit foundation whose mission is to cure muscular dystrophies caused by dysferlin protein deficiency, which includes the clinical presentations Limb-girdle muscular dystrophy type 2B (LGMD2B) and Miyoshi muscular dystrophy 1 (MMD1). The foundation is privately funded and does not solicit funding from patients or other sources.
- Coalition to Cure Calpain 3
Coalition to Cure Calpain 3 provides support for promising research into finding treatments or a cure for limb-girdle muscular dystrophy, type 2A/Calpainopathy (LGMD2A).
- National Stroke Association
National Stroke Association provides stroke education and programs to stroke survivors, caregivers, and healthcare professionals.
- Stroke Association
Learn more about the American Stroke Association and its efforts to reduce death and disability caused by stroke. Also learn about types of stroke, stroke warning signs, how to avoid stroke, find information to enhance the quality of life for stroke survivors, resources for healthcare professionals, and more.
- Brain Aneurysm Foundation
The Brain Aneurysm Foundation is the world’s only nonprofit organization solely dedicated to providing critical awareness, education, support, and research funding to reduce the incidence of brain aneurysm ruptures.
- Brain Attack Coalition
The Brain Attack Coalition is dedicated to best practices for preventing and combating stroke. Represents medical, scientific, advocacy, and government workers.
- Children’s Hemiplegia & Stroke Association
Children’s Hemiplegia & Stroke Association – improving the lives of children and young adults affected by hemiplegia, often due to perinatal or pediatric stroke.
Through community-based programs, YoungStroke teaches awareness, prevention, and recognition to raise public awareness of the increasing prevalence of stroke among young adults and its devastating impact upon community life.
Spinal Cord Injury
- United Spinal Association
Spinal Cord Injury Resource Center United Spinal Association is dedicated to enhancing the quality of life of all people living with a spinal cord injury or disease (SCI/D) and providing them and their loved ones, care providers and professionals with needed resources.
- Spinal Cord Society
An International Organization for Cure Research & Treatment of Spinal Cord Injury and Related Neural Problems.
- Christopher & Dana Reeve Foundation
The Reeve Foundation is dedicated to curing spinal cord injury by funding innovative research and improving quality of life for people living with paralysis.
- National Rehabilitation Information Center
The National Rehabilitation Information Center (NARIC) is the library of the National Institute on Disability, Independent Living, and Rehabilitation Research (NIDILRR.).
- The Woody Foundation
The Woody Foundation, Inc. is a 501(c)(3) not for profit organization formed in 2011 to raise funds for the recovery of those with paralysis.
- Project Walk Paralysis Recovery Centers
Project Walk Paralysis Recovery Centers are the world leader in spinal cord injury recovery, paralysis recovery, rehabilitation, research and patient education.
- Push To Walk
PTW provides individualized workouts and resources to people with spinal cord injuries, traumatic brain injuries, multiple sclerosis, and other forms of paralysis to optimize their current quality of life and prepare for future medical advancements.
- National Disability Rights Network
The National Disability Rights Network advocates for disability rights on a large scale.
TASH is an international leader in disability advocacy. Founded in 1975, TASH advocates for equity, opportunity, and inclusion for people with disabilities.
- The Arc
The Arc promotes and protects the human rights of people with intellectual and developmental disabilities.
- The Quadriciser
The Quadriciser is designed to move the arms and legs in patterns that closely simulate walking and crawling. These motions are very natural to the body. Users who find it difficult or impossible to move on their own often report great benefit.
Find top quality, durable adaptive equipment and buy directly from Rifton Equipment. Products for life from people who care.
For over twenty years, Altimate Medical has been leading the industry by creating unsurpassed standing technology for those with disabilities.
Manufactures partial weight bearing gait and balance therapy systems for patients with a wide range of impairments.
- Up N’ Go
Up n’ Go is a whole new class of Gait Trainers for Physical Therapy that combines the best features of traditional gait trainers and partial weight bearing.
Meyland-Smith was founded in 1901 and has developed many different products and walkers for the benefit of disabled users all over the world.
- Family Caregiver Alliance
Family Caregiver Alliance supports and sustains the important work of families nationwide caring for loved ones with chronic, disabling health conditions.
- Caregiver Action Network
The Caregiver Action Network is the nation’s leading family caregiver organization working to improve the quality of life for the more than 90 million Americans who care for loved ones with chronic conditions, disabilities, disease, or the frailties of old age.
- Caregivers Need Care Too
Care for yourself while caring for an aging loved one.