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Helpful Groups in the Spinal Cord Injury and Disease World

Organizations and resources that are helpful to the spinal cord injury and disease (SCI/D) community.

1. United Spinal Association-Membership

1.1. Join United Spinal Membership

There is no cost and membership in United Spinal Association is open to everyone to begin receiving our free monthly publications. Join United Spinal today and be a part of our growing community, receive our electronic and mailed publications, and learn more about our programs and services for people affected by spinal spinal cord injuries and disorders.

Chapters and Support Groups are the driving force at the core of the United Spinal Association. Members can affiliate with the chapter or group of their choosing.

 

2. Spinal Cord Injury & Disease Membership Organizations

2.1. National Spinal Cord Injury Association

Founded in 1948, the National Spinal Cord Injury Association was one the nation's oldest and largest civilian organizations dedicated to improving the quality of life for hundreds of thousands of Americans living with the results of spinal cord injury and disease (SCI/D) and their families. The NSCIA mission included educating and empowering survivors of spinal cord injury and disease to achieve and maintain the highest levels of independence, health and personal fulfillment. 

In the early part of the twenty first century, the organization disbanded due to a number of unfortunate circumstances that impacted on their ability to fund and advance their programs. At that time their membership and a large number of the organization's struggling chapters were folded into the United Spinal Association. Today these chapters are enjoying greatly increased membership and expanded missions and outreach.

2.2. United Spinal Association

Membership in the United Spinal Association is free and open to all individuals who have a spinal cord injury or disease. 

United Spinal Association is a national 501(c)(3) nonprofit membership organization formed in 1946 by paralyzed veterans. Our mission is to improve the quality of life of Americans with spinal cord injuries and disorders (SCI/D). Membership is free and open to all individuals with spinal cord injuries and diseases.

For more than sixty (60) years, we have committed our energy and our talents to improving the lives of individuals with a spinal cord injury or disease. Our initiatives, in promoting inclusion, improving access, fostering independence, enhancing mobility, and demanding equality, along with our commitment to member service, has helped to improve the quality of life and to create opportunities for our members and all people with spinal cord injuries or disorders.

United Spinal Association information:
Membership information
Programs and services
About United Spinal Association
Contact information

2.3. Multiple Sclerosis Association of America

The Multiple Sclerosis Association of America (MSAA) is a national nonprofit organization dedicated to enriching the quality of life for everyone affected by multiple sclerosis (MS). MSAA provides ongoing support and direct services to individuals with MS and the people close to them. MSAA also serves to promote greater understanding of the needs and challenges of those who face physical obstacles.

MSAA offers a variety of programs and services in all 50 states: Helpline consultations, equipment distribution, MRI diagnostic funding, resource assistance, and public awareness campaigns. MSAA also provides valuable information on the disease and symptom management through its award-winning literature and educational videos.

2.4. Can Do Multiple Sclerosis

Can Do Multiple Sclerosis  is a national nonprofit organization that provides innovative lifestyle empowerment programs for people living with MS and their support partners.

2.5. Paralyzed Veterans of America

For more than 65 years, Paralyzed Veterans of America has been on a mission to change lives and build brighter futures for our seriously injured heroes—to empower these brave men and women with what they need to achieve the things they fought for: freedom and independence.

The organization was founded by a band of service members who came home from World War II with a spinal cord injury.
 
They returned to a grateful nation, but also to a world with few solutions to the challenges they faced. They made a decision not just to live, but to live with dignity as contributors to society.  They created Paralyzed Veterans of America, an organization dedicated to veterans service, medical research and civil rights for people with disabilities.

Today, the work continues to create an America where all veterans and people with disabilities, and their families, have everything they need to live full and productive lives.

Paralyzed Veterans national officers and our 34 chapters represent thousands of veterans in all 50 states, the District of Columbia and Puerto Rico.


 

2.6. Spina Bifida Association

The Spina Bifida Association serves adults and children who live with the challenges of Spina Bifida.   Through its tools of education, advocacy, research, and service and its network of chapters, SBA touches thousands of lives each year.

3. Broad Disability Membership Organizations

3.1. American Association of People With Disabilities

The American Association of People with Disabilities (AAPD), the country's largest cross-disability membership organization, organizes the disability community to be a powerful voice for change – politically, economically, and socially. AAPD was founded in 1995 to help unite the diverse community of people with disabilities, including their family, friends and supporters, and to be a national voice for change in implementing the goals of the Americans with Disabilities Act (ADA).

AAPD was launched on July 25, 1995, and has received its 501(c)(3) designation. Key subcommittees of AAPD were developed to focus on three targeted agendas: Membership and Benefits, Policy and Operations.

As founding member Justin Dart said, "AAPD gives us the opportunity for harmonious unity and will help create the strong voice needed to overcome thousands of years of attitudinal and physical barriers."

3.2. The National Organization on Disability

The National Organization on Disability (NOD) is a private, non-profit organization that promotes the full participation of America's 54 million people with disabilities in all aspects of life. In 2006, NOD narrowed its focus to increasing employment opportunities for the 79 percent of working-age Americans with disabilities who are not employed.

4. Professional Organizations in the SCI/D World

4.1. Academy of Spinal Cord Injury Professionals

The Academy of Spinal Cord Injury Professionals (ASCIP) is an interdisciplinary organization devoted to improving care through sharing knowledge and expertise.

ASCIP is a not for profit incorporated association comprised of 4 professional sections: American Paraplegia Society (APS), Association of Spinal Cord Injury Nurses (ASCIN), Psychologists and Social Workers (PSW) and Therapy Leadership Council (TLC).

ASCIP publishes the Journal of Spinal Cord Medicine.

4.2. American Spinal Injury Association

During the decade of the 1960s, physicians and other medical professionals engaged in the treatment of spinal cord injury sought to align themselves as a group, in an effort to exchange ideas and work together toward the establishment of a model for care delivery to this patient population. The early 1970s brought support for the concept of a model of care from the Rehabilitation Services Administration (under the then Department of Health, Education and Welfare) which created the "model spinal cord injury systems" program. The program is now supported by the Department of Education, National Institute on Disability and Rehabilitation Research. It was out of this group the American Spinal Injury Association (ASIA) was created in 1973.

ASIA held its first official meeting in 1973, with twenty-one members present. Currently, ASIA has nearly 600 members. In 1974, attendance at the meeting was expanded to include non-physicians. The first formal scientific session was held in 1975 in New York City. That same year, the association incorporated in Illinois and the Central Office was opened in Chicago. Several years later, a second office was established in Atlanta, Georgia which managed the clinical meeting planning. In 2006, ASIA closed the Chicago office and consolidated its work in Atlanta, under the supervisor of an Executive Director.

The mission of ASIA is:

  1. to promote and establish standards of excellence for all aspects of health care of individuals with spinal cord injury from onset throughout life.
  2. to educate members, other healthcare professionals, patients and their families as well as the public on all aspects of spinal cord injury and its consequences in order to prevent injury, improve care, increase availability of services and maximize the injured individual's potential for full participation in all areas of community life.
  3. to foster research which aims at preventing spinal cord injury, improving care, reducing consequent disability, and finding a cure for both acute and chronic SCI.
  4. to facilitate communication between members and other physicians, allied health care professionals, researchers and consumers.

4.3. Consortium of Multiple Sclerosis Centers (CMSC)

The mission of the Consortium of Multiple Sclerosis Centers (CMSC) is to be the preeminent professional organization for multiple sclerosis (MS) healthcare providers and researchers in North America, and a valued partner in the global MS community. The core purpose is to maximize the ability of MS healthcare professionals to impact care of people who are affected by MS, thus improving their quality of life.

4.4. Exceptional Nurse

Exceptional Nurse

ExceptionalNurse.com is a nonprofit 501 (c) 3 resource network committed to inclusion of more people with disabilities in the nursing profession. By sharing information and resources, ExceptionalNurse.com hopes to facilitate inclusion of students with disabilities in nursing education programs and foster resilience and continued practice for nurses who are, or become, disabled.

4.5. International Organization of Multiple Sclerosis Nurses

Founded on May 30, 1997, International Organization of Multiple Sclerosis Nurses (IOMSN) is the first and only international organization focusing solely on the needs and goals of professional nurses, anywhere in the world, who care for people with multiple sclerosis. Mentoring, educating, networking, sharing - the IOMSN supports nurses in their continuing effort to offer hope.

The mission of the IOMSN is the establishment and perpetuation of a specialized branch of nursing in multiple sclerosis; to establish standards of nursing care in multiple sclerosis; to support multiple sclerosis nursing research; and to educate the health care community about multiple sclerosis; and to disseminate this knowledge throughout the world.

The ultimate goal of the IOMSN is to improve the lives of all those persons affected by multiple sclerosis through the provision of appropriate healthcare services and to make hope happen!

4.6. Rehabilitation Engineering and Assistive Technology Society of North America (RESNA)

RESNA, the Rehabilitation Engineering and Assistive Technology Society of North America, is the premier professional organization dedicated to promoting the health and well-being of people with disabilities through increasing access to technology solutions. RESNA advances the field by offering certification, continuing education, and professional development; developing assistive technology standards; promoting research and public policy; and sponsoring forums for the exchange of information and ideas to meet the needs of our multidisciplinary constituency.

Contact:

RESNA
1560 Wilson Bvd
Suite 850
Arlington, VA 22209
PHONE: (703) 524-6686
FAX: (703) 524-6630

 

5. Research Organizations in the SCI/D World

5.1. Independent Living Research Utilization

Independent Living Research Utilization

The ILRU (Independent Living Research Utilization) program is a national center for information, training, research, and technical assistance in independent living. Its goal is to expand the body of knowledge in independent living and to improve utilization of results of research programs and demonstration projects in this field. It is a program of TIRR (The Institute for Rehabilitation and Research), a nationally recognized medical rehabilitation facility for persons with disabilities.

Since ILRU was established in 1977, it has developed a variety of strategies for collecting, synthesizing, and disseminating information related to the field of independent living. ILRU staff--a majority of whom are people with disabilities--serve independent living centers, statewide independent living councils, state and federal rehabilitation agencies, consumer organizations, educational institutions, medical facilities, and other organizations involved in the field, both nationally and internationally.

5.2. Miami Project to Cure Paralysis

Miami Project to Cure Paralysis

In 1985, Barth A. Green, M.D. and NFL Hall of Fame linebacker Nick Buoniconti helped found The Miami Project to Cure Paralysis after Nick's son, Marc, sustained a spinal cord injury during a college football game. Today, The Miami Project is the world's most comprehensive spinal cord injury research center, housed in the Lois Pope LIFE Center, a Center of Excellence at the University of Miami Miller School of Medicine. The Miami Project's international team of more than 200 scientists, researchers and clinicians take innovative approaches to the challenge of spinal cord injury.

The Miami Project's Human Clinical Trials Initiative will take discoveries found to be successful in laboratory studies and fast track them to human studies with the approval of the FDA. The Miami Project is well positioned and confident that we have the expertise, knowledge and drive to navigate through the FDA process and initiate new human clinical trials involving Schwann cell transplantation. This trial will be based in part on published work in which Miami Project scientists showed up to 70% return of normal walking function in experimental models. For more than 23 years, The Miami Project has worked carefully and diligently towards this goal and the results show that the time is right to make this important step into humans.

 

5.3. Rehabilitation Research Center

Rehabilitation Research Center

The Rehabilitation Research Center (RRC) at Santa Clara Valley Medical Center (SCVMC) conducts research to better understand and improve outcomes after TBI and SCI. Outcomes studied include the functional, vocational, and life satisfaction areas that are important to people with and without disabilities. The RRC strives to meet the needs of injured persons and their families for information, education, and support.

The RRC is located at Santa Clara Valley Medical Center in San Jose, California. It is funded through grants from the National Institute on Disability and Rehabilitation Research, Office of Special Education and Rehabilitative Services, US Department of Education.

This website contains information on the activities of the RRC as well as a large collection of easily accessible online resources.

5.4. Yale Center for Neuroscience and Regeneration Research

The Center for Neuroscience and Regeneration Research is a state-of-the-art research facility dedicated to molecular and cell-based discoveries toward restoration and protection of nervous system function. It is a symbol of inter-institutional cooperation that brings together the strengths of the Paralyzed Veterans of America, United Spinal Association, Department of Veterans Affairs, and Yale University School of Medicine, all working together toward a common goal. Designated as a Center of Excellence on Restoration of Nervous System Function by the Department of Veterans Affairs' Rehabilitation Research and Development service our mission is to harness the "genomic revolution" and generate effective strategies that will restore and preserve function in people with nervous system injury and disease.

Our Center has to its credit, over 500 articles in peer-reviewed journals including Nature Neuroscience, Nature Medicine, Nature Reviews Neuroscience, Annals of Neurology, PNAS, and Journal of Neuroscience. These articles have been cited over 25,000 times according to Citation Index. In addition, Center staff have authored or edited more than half a dozen books including Spinal Cord Compression, the definitive work on the subject; Diseases of the Spine and Spinal Cord, and The Axon. We are currently engaged in major collaborations with investigators in England, Germany, The Netherlands, China, and Japan.

Our multidisciplinary team of scientists includes molecular cell biologists, physiologists, pharmacologists, stem cell biologists, computational neuroscientists, and clinicians who collaborate closely and move back and forth between the laboratory and the clinic as they conduct rigorous investigations in experimental models and human disease. Open doors and teamwork are the rule. The team includes PhD and MD-PhD students, and other trainees who are preparing to become the next-generation researchers of CNS plasticity and recovery of function in SCI, MS and related disorders. Our scientists have received numerous awards and accolades; organize and chair scientific workshops and symposia, and frequently lecture world-wide.

The Center is led by Stephen Waxman, M.D., Ph.D.

6. Spinal Cord Injury & Disease (SCI/D) Resources

6.1. Spinal Cord Central

Spinal Cord Central is the resource portal of National Spinal Cord Injury Association, which is a program of United Spinal Association.  These two associaions, each with more than sixty years of independent experience helping people with spinal cord injury and diseases, merged in 2011 to create the largest membership organization in the United States dedicated to health, independence and well-being of people with SCI/D.

Spinal Cord Central is staffed by social workers and clinicians skilled in SCI/D care, as well as individuals with spinal cord injuries and disorders, to offer practical, real-world guidance to our community.

6.2. CareCure Community

CareCure Community

SCI Care - The art and science of managing therapies, routines, medication, supplies, equipment and everything else needed to maintain the spinal injured person in top health.

Ask SCI-Nurses questions in forums related to Care, New SCI, Relationships and Sexuality, Transverse Myelitis and Atraumatic SCI, Caregiving, Equipment and exercise and more.

SCI Cure - Therapies that restore function in spinal cord injury and related conditions. The Cure Forum contains comprehensive and up-to-date news on curing spinal cord injury. The Research Forums lists abstracts of the latest scientific articles on brain injury & stroke, neurodegeneration, multiple sclerosis, neuropathic pain, spinal cord injury, stem cells, and tranverse myelitis. Exchange information about Clinical Trials, Equipment & Services, Doctors & Clinics.

   

6.3. Christopher and Dana Reeve Paralysis Resource Center

The Christopher and Dana Reeve Foundation Paralysis Resource Center (PRC) promotes the health and well-being of people living with a spinal cord injury, mobility impairment and paralysis by providing comprehensive information, resources and referral services.

6.4. Paralinks Wheelchair Nation

Paralinks Wheelchair Nation has been gathering valuable information on SCI for over eleven years. This site has been created and maintained by a quadriplegic and a paraplegic and is a grass roots not for profit site.

6.5. Spinal Cord Injury Resource Center

Spinal Cord Injury Resource Center

A vast amount of information helping to explain basic anatomy, physiology, and the complications resulting from a spinal cord injury.

6.6. SPINALCORD Information Network

The Spinal Cord Injury Information Network offers educational materials and information on services of the UAB Spinal Cord Injury Model System (UAB-SCIMS) along with links to national organizations, government agencies, commercial products, and educational resources related to spinal cord injury.

The University of Alabama at Birmingham Spinal Cord Injury Model System (UAB-SCIMS) is one of 14 national SCI Model Systems working to maintain and improve a cost-effective, comprehensive service delivery system for people with SCI

7. Publications in the SCI/D World

7.1. New Mobility Magazine

New Mobility encourages the integration of active-lifestyle wheelchair users into mainstream society, while simultaneously reflecting the vibrant world of disability-related arts, media, advocacy and philosophy. Our stories foster a sense of community and empower readers to:

  • participate in all areas of life, including education, work, love, sex, home ownership, parenting, sports, recreation, travel and entertainment
  • be informed of and take charge of health concerns
  • obtain appropriate technology
  • assert legal rights.

 

7.2. International Vent Users Network (IVUN)

Post-Polio Health International (PHI), incorporated as a 501(c)3 – a non-profit – in 1960, also "does business as" International Ventilator Users Network (IVUN).

PHI – formerly Gazette International Networking Institute (GINI) – is governed by a Board of Directors and has a paid staff of three.

Mission Statement

International Ventilator Users Network's mission is to enhance the lives and independence of home ventilator users and polio survivors through education, advocacy, research and networking.

7.3. PN/Paraplegia News Magazine

PN Magazine

From a six-page newsletter in 1945 to a monthly publication that spans the globe, PN continues to be an invaluable resource for people with spinal-cord injuries, family members, and caregivers alike.

Originally, PN was known as Paraplegia News, and during an era where spinal-cord injuries were considered a life-altering tragedy, our mission was clear.

Since that time we have seen great strides in technology, public awareness, and the general perceptions concerning people with disabilities and wanted to recognize that Paraplegia News meant more than paraplegia.

It embodies the "power" of the spirit, the "professional" contributions to society, the "personal" story within each person, the "practical" resolve to carry on, and even the "playful" nature of the soul.

In short – we are PN, and we welcome you to better wheelchair living.

7.4. Sports 'n Spokes

Sports 'n Spokes is a magazine about adaptive sports and recreation opportunities that span the United States.

8. E-newsletters of Interest

8.1. American Association of People with Disabilities (AAPD)

The American Association of People with Disabilities (AAPD) and the AAPD newsletter promotes equal opportunity, economic power, independent living and political participation.

8.2. Can Do Multiple Sclerosis

Can Do Multiple Sclerosis is a leading provider of innovative lifestyle empowerment programs for people with MS and their support partners.

Sign up to receive Can Do emails to make donatoin dollars go further 

8.3. Consumer Directed Services

Consumer Directed Services offers this FREE Newsletter and the FREE Service to Consumersto assist Consumers with the problem of finding new Personal Care Assistants.

8.4. Human Engineering Research Lab (HERL) newsletter

Human Engineering Research Laboratories: To subscribe to the electronic mailing list: http://www.herl.pitt.edu/herl-newsletter

Contact HERL!
Comments and questions (or to subscribe to the print newsletter): mil72@pitt.edu  or call: 412-822-3663
Check us out HERL on Facebook

8.5. International Ventilator Users Network

International Ventilator Users Network enhances the lives and independence of home ventilator users and polio survivors through
education, advocacy, research and networking. Subscribe to IVUN membership for their bi-monthly e-newsletter for more informaiton.


8.6. National Center on Physical Activity and Disability

National Center on Physical Activity and Disability  (NCPAD) is a free, electronic newsletter.

NCPAD is an information center concerned with physical activity and disability. Being physically active is good for every body. That's a message you will find many times on this site. Being active is an important part of getting and staying healthy.

This valuable newsletter includes physical activity and nutrition guidelines, tips, and practical applications to help you stay healthy and physically fit.

8.7. National MS Society on-line

Natoinal MS Society on-line community to folow the latest in MS research, treatments..... 

8.8. "The Current" Neurotech Network Newsletter

Neurotech Network Newsletter, The newsletter, The Current  helps you stay updated on the latest information and developments in neurotechnology.

Sign up for this free newsletter. 

8.9. Northwest Regional SCI System

Northwest Regional Spinal Cord Injury System (NWRSCIS) is a program of University of Washington, Rehabilitation Medicine.  NWRSCIS offers a SCI Update Newsletter, forums and other useful educational information.  You can sign up to received these free, valuable, timely electronic publications about SCI. These are also available by U.S. Mail.

Sign up for:

SCI Update Newsletter

8.10. Professional Patient Advocate Institute

The Professional Patient Advocate Institute is a membership organization including health care professionals with a free e-newsletter containing updates on the trends in health care.

8.11. Shepherd Center's Spinal Column Magazine and AXIS Newsletter

Shepherd Center's Spinal Column quarterly magazine features patient profiles, medical and treatment news, upcoming events, research features,  and more. 

Shepherd Center AXIS newsletter- AXIS is a newsletter published by Shepherd Center that covers news and information about research, medical treatments and healthy living for people with spinal cord injuries. It is published twice per year.

Please visit: http://www.shepherd.org/news/publications

8.12. U.S. Paralympics eNews

Follow the U.S. Paralympics at: U.S. Paralympics.

9. Other Resources

9.1. Gridiron Heroes Spinal Cord Injury Foundation

Gridiron Heroes Spinal Cord Injury Foundation was formed in 2003 with a specific mission: To provide immediate, as well as, long term resources and support to individuals sustaining catastrophic spinal cord injury through activities associated with high school football.

9.2. National Arts and Disability Center

National Arts and Disability Center

Our mission is to promote the full inclusion of audiences and artists with disabilities into all facets of the arts community.

9.3. National Chamber of Commerce for Persons with Disabilities

National Chamber of Commerce for Persons with Disabilities

The Chamber's mission is to help persons with disabilities and their direct caregivers to form and grow businesses.

9.4. National Institute of Neurological Disorders and Stroke

National Institute of Neurological Disorders and Stroke

The mission of the NINDS is to reduce the burden of neurological disease-a burden borne by every age group, every segment of society, and people all over the world. To accomplish this goal the NINDS supports and conducts research, both basic and clinical, on the normal and diseased nervous system, fosters the training of investigators in the basic and clinical neurosciences, and seeks better understanding, diagnosis, treatment, and prevention of neurological disorders.

9.5. Northwest Regional Spinal Cord Injury System

Northwest Regional Spinal Cord Injury System

The mission of the NWRSCIS is to improve the lives of people with SCI through excellent patient care, research and education.

9.6. Sam Schmidt Paralysis Foundation

Sam Schmidt Paralysis Foundation

The Sam Schmidt Paralysis Foundation helps individuals overcome spinal cord injuries and other neurological disorders by funding scientific research, medical treatment, rehabilitation and technological advances. The Foundation also raises funds to improve quality of life issues and ensure the best possible outcomes by touching individual lives.

9.7. Spinal Cord Injury Information Determined2heal Foundation

Spinal Cord Injury Information Determined2heal Foundation

The Determined2heal Foundation is a 501(c)3 nonprofit foundation. The foundation was created after Josh Basile, a Maryland teenager, suffered a spinal cord injury in Bethany Beach, Delaware during the summer of 2004. The accident left Josh, a former college tennis player, paralyzed from the shoulders down. His experiences motivated him to make a difference in the lives of others.

9.8. The University of Michigan Model Spinal Cord Injury Care System

The University of Michigan Model Spinal Cord Injury Care System

Our Purpose:

  • Research many different aspects of spinal cord injury (SCI).
  • Inform people with SCI, their families, the general public and professionals about SCI through our lecture series, our Web site and our publications.
  • Provide state-of-the-art services for people with spinal cord injuries during their initial hospitalization -- and continuing care after discharge -- working in conjunction with the University of Michigan Health System.
  • Work in collaboration with the Ann Arbor Center for Independent Living to support people with disabilities in continuing to live as fully as possible in the community.