Spinal cord disease can result from diverse processes including trauma. Genetics versus environment is still an issue for the numerous classifications used to describe degenerative spinal cord disease. The growing clinical spectrum observed in hereditary neurodegenerative diseases of the spinal cord continues to raise the question of outside factors.
Doctors in charge of patients with progressive spinal cord disease must be aware that the field of degenerative diseases is a moving one. The new era of molecular and genetic analysis offer more evidence of degenerative causes, set of causes, or manner of causation of a disease or condition more than in the past.
Spinal cord disease problems include:
- Infections such as polio
- Inflammatory diseases
- Autoimmune diseases such as MS, Multiple Sclerosis
- Neurodegenerative diseases such as ALS, amyotrophic lateral sclerosis and Parkinson disease
https://www.gbs-cidp.org/cidp/ and https://www.gbs-cidp.org/canada/
The GBS/CIDP Foundation International is working for a better future. A time when anyone with Guillain-Barre syndrome (GBS), Chronic Inflammatory Demyelinating Polyneuropathy (CIDP), and related variants has access to an early and accurate diagnosis, proper treatment, and the opportunity for a full recovery
Our Mission is to improve the quality of life for individuals and families affected by GBS, CIDP, or related variants by:
- Creating and nurturing a global network of volunteers, healthcare professionals, researchers and industry partners. A network providing those affected with GBS, CIDP, or related variants with support and the most current available information;
- Designing and implementing public, medical, and professional education programs to increase awareness and improve understanding;
- Funding research through grants, establishing fellowships, and using other appropriate avenues to identify the causes of and discover treatments for GBS, CIDP, and related variants;
- Structuring partnerships to engage in advocacy at the federal, state, and grassroots levels to advance our vision and mission with legislators and government agencies.
https://guthyjacksonfoundation.org/
The Guthy-Jackson Charitable Foundation is dedicated to funding research to understand the Neuromyelitis Optica (NMO) Spectrum Disorder. Once considered a severe variant of multiple sclerosis (MS). Recent discoveries suggest it is a separate disease despite both sometimes causing attacks of optic neuritis and myelitis. NMO is different from MS in the severity of its attacks. Also its tendency to solely strike the optic nerves and spinal cord at the beginning of the disease. NMO is now known to be an uncommon spinal cord disease. Attacking the central nervous system (CNS) it affects the optic nerves and spinal cord.
Our Foundation supports programs and opportunities aimed at improving options for treatment, prevention, and an eventual cure for this disease. Promoting connections among academia, healthcare, industry and regulatory partnerships for leading-edge information resources. Serving as a gateway for all who seek to learn more as well.
Worldwide we will continue to identify proof-of-concept clinical studies that lead to industry-sponsored clinical trials for promising NMO drugs. Our Foundation does not endorse, sponsor, or conduct these trials. Nor do we opt to participate in any monetary benefit from patents arising out of research we have funded; our grantees—individuals and institutions—retain full ownership of their intellectual property. Our findings may serve as breakthroughs in medicine, genetics, and bio-technology to help address the global epidemic of autoimmune diseases.
The Guthy-Jackson Charitable Foundation devotes 100% of all funding gifts to basic research centers.
[/otw_shortcode_content_toggle] [otw_shortcode_content_toggle title=”Polio Survivors Association” opened=”closed”]http://www.polioassociation.org
The Polio Survivors Association is dedicated to education, advocacy, and support. We are not a membership organization, but encourage polio survivors to join support groups in their area. Many people do not remember the great polio epidemics of the 1940s and 50s. The Polio Survivors Association formed to help those who can never forget.
The Polio Survivors Association concentrates its efforts in these main areas:
- Ensuring that respirator dependent polio survivors living in Los Angeles County can remain safely in their own homes. Obtaining and maintaining electric generators protects those individuals who would be jeopardized by an interruption of electrical service. Working with local and State agencies we obtain funding for adaptive equipment, assistive devices, and home care expenses.
- Providing educational material to polio survivors throughout the United States and Canada is a growing service Helping people beginning to experience the late effects of poliomyelitis. Sometimes referred to as a new spinal cord disease “post-polio syndrome” or PPS can include renewed muscle weakness, fatigue, and pain.
- The best medical evidence indicates that prolonged overcompensation by polio survivors for their damaged neuromusculature is responsible for this renewal of disability. We work closely with physicians and local polio support groups to monitor and determine if this is a recurrence, an after-effect or a new spinal cord disease.
- We work with other organizations and agencies to promote public policies that encourage home care for people with disabilities. Polio survivors were the first large group to attempt home-based, long-term care despite very severe disability, often including respirator dependence. We have proven that this can be both safe and cost effective.
http://spinabifidaassociation.org
The Spina Bifida Association (SBA) serves adults and children who live with the challenges of the spinal cord disease, Spina Bifida. Since 1973, SBA has been the only national voluntary health agency solely dedicated to enhancing the lives of those with Spina Bifida and those whose lives are touched by this challenging birth defect. Its tools are education, advocacy, research, and service.
Through its network of Chapters, SBA has a presence in more than 125 communities nationwide and touches thousands of people each year. SBA has created programs, provided services, and achieved results from our advocacy efforts that are changing lives.
Annually connecting as many as 10,000 people to accurate information from numerous reliable resources and publications through the National Resource Center on Spina Bifida housed at our headquarters in Washington, DC.
Often assistance is provided through a referral to a caring person at an SBA Chapter. Compassionate support frequently is found in your own community.
SBA’s National Conference held in June is always special. Quests for new information, celebrations of lives being lived to their fullest, and the unity of a community built on caring and compassion are embodied here. Learning from the comfort of their own home is now available. SBA offers SB University (SBU), a series of online webinars designed to teach people about Spina Bifida and its complexities.
SBA also supports all efforts to bring together leaders in health care and representatives of the Spina Bifida community. Every few years, SBA hosts the World Congress on Spina Bifida Research and Care, an international symposium of health care professionals, researchers and scientists dedicated to unlocking the mysteries of Spina Bifida
[/otw_shortcode_content_toggle] [otw_shortcode_content_toggle title=”Cody Unser First Step Foundation” opened=”closed”]The Cody Unser First Step Foundation is a global not-for-profit organization. Focused on raising research funds, public awareness and quality of life for those afflicted with all forms of spinal cord injury, spinal cord disease or other spinal cord related paralysis.
The Foundation will also address the cause, rehabilitation, prevention and cure for Transverse Myelitis, and freely affiliate with other medical, charitable and corporate entities to achieve these goals.
Foundation programs include Cody Unser’s Great Scuba Adventures and the disabled Military scuba program, Operation Deep Down.
[/otw_shortcode_content_toggle] [otw_shortcode_content_toggle title=”Transverse Myelitis Association – TMA” opened=”closed”]The Transverse Myelitis Association (TMA), founded in 1994, is a not-for-profit foundation dedicated to the support of a spectrum of rare neuro-immune disorders including: Acute Disseminated Encephalomyelitis (ADEM), Neuromyelitis Optica Spectrum Disorder (NMOSD), Optic Neuritis (ON) and Transverse Myelitis (TM), including Acute Flaccid Myelitis (AFM).
We support individuals living with rare neuro-immune diagnoses and their families, promote awareness to empower patients, families, clinicians and scientists, build a collaborative and dedicated clinical care network and help advance scientific understanding and research. Information resources for our community through our website, newsletters, blogs is a priority. Worldwide support is available through a network of local support groups and our partnership with Smart Patients. Also annual quality of life programs such as family camps for children and their families.
We support the post-residency training of clinicians committed to specializing in spinal cord disease. Grant support targeting these disorders go to academic Centers of Excellence and fund novel pilot research ideas.
Membership in TMA includes individuals with these rare disorders, family members, caregivers, and the medical professionals who treat these disorders. Members are from more than 80 different countries include support groups across the United States and around the world. There are no membership fees.
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