RESOURCES

There’s a wealth of great disability-related information on the internet, but finding it can be tricky. To help you out, I’ve provided links below to more than 300 resources on spinal cord injuries, spina bifida, and a wide variety of other topics of interest to the disabled community. Hopefully these will point you in the right direction no matter what you’re looking for.

(Note: Although I found these resources to be useful, I can’t vouch for the accuracy of their information, and nothing below constitutes medical advice. Talk to your doctor before acting or relying upon anything you read on this website or the websites I link to.)

General Spinal Cord Injury Resources

Christopher & Dana Reeve Paralysis Resource Center

Provides a host of information, resources, and referral services for people living with a spinal cord injury and their families and caregivers. 973-467-8270

Family Voices

A nationwide network of family-led organizations providing support to families and friends of children and youth with special health care needs and disabilities. 888-835-5669

National Spinal Cord Injury Association

Works to maximize the quality of life and opportunities for people with spinal cord injuries and diseases by advocating for greater access to healthcare, mobility equipment, employment opportunities, public transportation, rehabilitation, community services and supports, and the built environment. 800-962-9629

Office of Disability Employment Policy

The only non-regulatory federal agency that promotes policies and coordinates with employers and all levels of government to increase workplace success for people with disabilities.

Spinal Cord Injury Information Network

A resource maintained by the University of Alabama at Birmingham Spinal Cord Injury Model System to promote knowledge in the areas of research, health, and quality of life for people with spinal cord injuries, their families, and SCI-related professionals.

Unite 2 Fight Paralysis

Seeks to unite and empower the international spinal cord injury community to cure paralysis through advocacy, education, and support for research. 888-564-2228

Spinal Cord Injury Levels & Classification

The meaning of the different spinal cord injury levels, the definition of complete and incomplete injury, and the different classification of spinal cord injury

Spinal Cord Injury and Social Security Disability

Filing for Social Security Disability with a spinal cord injury

Questions To Consider When Choosing A Rehab Facility

Choosing a rehabilitation center is very important. Not all rehabilitation centers have a spinal cord injury program. Do as much research as possible, and don’t be afraid to ask questions.

Non Wheelchair User Etiquette

Firsthand tips for non-wheelchair users

State Spinal Cord Injury Resources

The United Spinal Association has an awesome list of SCI resources in every state. Check it out!

Spina Bifida Resources

Spina Bifida Association of America

Fueled by dedicated health care providers, parents, adults, caregivers, and others, we are committed to helping people live longer, healthier lives through research, education, advocacy, and support. 800-621-3141

Spina Bifida Resource Network

Provides individualized services in the home and community, including care coordination, training by nurses, advocacy in the schools, financial assistance, and educational and recreational events.

National Institutes of Health

Centers for Disease Control and Prevention

March of Dimes

Cleveland Clinic

Multiple Sclerosis Resources

National Multiple Sclerosis Society

The National MS Society’s vision is that people affected by MS can live their best lives as we stop MS in its tracks, restore what has been lost and end MS forever. 800-344-4867

Multiple Sclerosis Association of America

The MSSA is a leading resource for the entire MS community, improving lives today through vital services and support. We are dedicated to improving lives today through ongoing support and direct services to individuals with MS, their families, and their care partners. 800-532-7667

Multiple Sclerosis Foundation

The Multiple Sclerosis Foundation, known in the MS community as MS Focus, is a nonprofit organization focused on providing free services that address the critical needs of people with MS and their families, helping them maintain the best quality of life. 888-673-6287

Can Do Multiple Sclerosis

Our whole person, whole health and whole community approach to MS provides people and their support partners with a comprehensive, multi-dimensional view of MS that addresses the physical, interpersonal, emotional, intellectual, and spiritual aspects that are unique to them. 800-367-3101

Race to Erase MS

Race to Erase MS is dedicated to the treatment and ultimate cure of Multiple Sclerosis. Funding research is the core focus of the Foundation and all funds raised support our Center Without Walls program, a selected network of the nation’s top MS research centers. 310-440-4842

MS International Federation

The MS International Federation is a unique global network of 48 MS organizations, people affected by MS, volunteers, and staff from around the world. 44 (0) 20 7620 1911

Cerebral Palsy Resources

This list comes courtesy of the Centers for Disease Control.

American Academy of Cerebral Palsy and Developmental Medicine

The American Academy of Cerebral Palsy and Developmental Medicine is dedicated to improvement in the care of people with childhood-onset disability, their families, and communities. Their website offers various resources for individuals and families, including a directory of providers.

Cerebral Palsy Foundation

CPF is a not for profit 501(c)3 organization that funds research and educational activities related to the cause, cure and evidence-based care for those with cerebral palsy. The website has over 160 “research fact sheets”, web casts of scientific workshops, current and past research projects, discussion forums for current CP treatments, and a link to a registry of clinical trials in the United States and around the world.

Motor Delays: Early Identification and Evaluation

This clinical report from the American Academy of Pediatrics provides more information on the early identification and evaluation of motor delays among children.

National Institute of Neurological Disorders and Stroke (NINDS)

NINDS has a brochure on cerebral palsy that includes information on early signs of the condition, diagnosis, causes, treatment, and where to go for more information. The brochure is available in both English and Spanish.

United Cerebral Palsy (UCP)

United Cerebral Palsy educates, advocates and provides support services for people with a spectrum of disabilities, including CP. The site has a One Stop Resource Guide where visitors can locate organizations in each state to help answer questions about healthcare, home modifications, or financial assistance.

World CP Day

World CP Day is a global project dedicated to changing the world for people living with cerebral palsy and their families.

Cerebral Palsy Research Network

Cerebral Palsy Research Network is a multi-institutional collaborative effort whose primary mission is to improve health outcomes for people with CP.

Motor Delays: Early Identification and Evaluation

This clinical report from the American Academy of Pediatrics provides more information on the early identification and evaluation of motor delays among children.

Developmental Medicine & Child Neurology journal’s special issue on adults with cerebral palsy

The Developmental Medicine & Child Neurology journal offers access to articles based on a 2009 workshop that explored the unique challenges experienced by adults with cerebral palsy.

ALS Resources

ALS Association

The mission of the ALS Association is “To discover treatments and a cure for ALS, and to serve, advocate for, and empower people affected by ALS to live their lives to the fullest.” Visit the organization’s resource page for fact sheets, guides, brochures, websites, and more. You can also find local support.

Centers for Disease Control

The CDC has a list of organizations that support ALS patients and caregivers.

I Am ALS

Founded by ALS patient Brian Wallach and his wife, Sandra Abrevaya, I AM ALS is revolutionizing how we cure ALS by empowering and mobilizing patients, engaging with policy-makers and offering vital resources for people impacted by ALS.

Your ALS Guide

ALS Guide is “here to help improve everyday quality of life for families impacted by ALS. Find trusted information, practical tips, educational videos, expert advice, helpful resources, and more—all in one place.” See its resource list.

ALS Hope Foundation

Founded in 1999 by Terry Heiman-Patterson, MD, and Jeffrey Deitch, PhD, the ALS Hope Foundation provides funding for the MDA/ALS Center of Hope at Temple University Lewis Katz School of Medicine, one of the first multidisciplinary ALS clinics in the country, and the Neuromuscular Research Laboratory at Temple University College of Medicine. The Foundation also provides educational events to inform people living with ALS and the public about ALS research. The ALS Hope Foundation funds local and international efforts to find the cause and cure of ALS. This much needed support is generated through fundraisers and private donations. See its resource list.

ALS Pathways

This organization offers a wealth of information about ALS, including what it is, how it affects the body, what causes it, symptoms, and management. There’s also a resource list and a page on caregiver support.

Clinical Trials

CenterWatch Clinical Trials Listing Service

Provides lists of industry and government-sponsored clinical trials, information on new drug therapies, and a host of related information for both patients and researchers. 617-948-5100

CinicalTrials.gov

A searchable database of clinical trials developed by the U.S. National Institutes of Health.

Mayo Clinic Spinal Cord Injury Trials

A filterable listing of clinical trials at the Mayo Clinic that are currently recruiting participants, as well as information about volunteering and about clinical studies generally.

Miami Project Clinical Trials

Clinical trials and current studies at University of Miami affiliated hospitals for people with an SCI, investigating questions regarding exercise science, nutrition, rehabilitation training, pain, male fertility, aging, and brain-machine interface technology. 305–243-6001

North American Clinical Trials Network

Affiliated with the Christopher & Dana Reeve Foundation, works to bring promising therapies with strong evidence of efficacy and safety out of the laboratory and into clinical trials. 800-225-0292

Shepherd Center

A list of current SCI clinical trials at the Atlanta, Georgia-based Shepherd Center that are in need of volunteers. 404-352-2020

Guide to Experimental Treatments for SCI

A guide to experimental treatments for SCI provided by the International Campaign for Cures of Spinal Cord Injury Paralysis

Rehabilitation Center Directory

Spinalcord.com has a great directory of rehabilitation centers around the country

Resources By Subject

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Assistive Technology & Equipment

Babies With Spina Bifida

Bowel Management

Caregiver Support

College/Post-Secondary Education

Children’s Emotional Health

Education Law and Advocacy

Emergency Preparedness

Employment

Exercise

Health Care Advocacy

Health Insurance and Disability Income

Housing and Accessibility

Hydrocephalus

Latex Allergy

Legal Advocacy

Medications and Prescriptions

Mental Health

Nutrition

Orthopedics

Pain Management

Safety Issues

School-Age Children

Self-Advocacy

Service Animals

Sexuality

Sibling Support

Skin Care

Spina Bifida Centers/Clinics

Sports and Recreation

Tethered Spinal Cord

Transitioning to Adult Life

Transitioning to a Wheelchair

Transportation and Travel

Urology and Continence

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