RESOURCES
There are volumes of resources available out there for individuals who have had strokes or various types of brain injuries as well as for their families and loved ones. The American Stroke Association as well as the American Heart Association, National Stroke Association, CDC and other organizations have a huge quantity of resources that we can all tap into. They provide information about strokes as well as suggestions and links for a variety of services, therapeutic resources and rehabilitation options.
You can also contact the discharge planner at a local hospital or the one that you or a loved one were admitted to for a stroke. Most towns, cities or counties also have an ‘Info Line’ available where you can acquire resources that you might need to help with a particular concern or questions regarding strokes.
Each state has lists of all of their medical facilities as well as lists of all those accredited for specific specialties. You might consider looking at your states
website for programs that you might explore regarding specific medical conditions.
The Joint Commission is a United States based nonprofit organization that accredits more than 22,000 health care organizations and programs. Its mission is to continuously improve health care for the public, by evaluating health care
organizations and encouraging them to excel in providing safe and effective care of the highest quality and value.
The Joint Commision also has a very comprehensive website that names all hospitals and whether they are a Stroke Center or are specifically accredited as Primary, Thrombectomy-Capable or Comprehensive Stroke centers.
ORGANIZATIONS
American Stroke Association
The American Stroke Association is a relentless force for a healthier world with fewer strokes. They team up with millions of volunteers to prevent, treat and beat stroke by funding innovative research, fighting for stronger public health policies, and providing lifesaving tools and information. The Dallas-based association was created in 1998 as a division of the American Heart Association. To learn more or to get involved, call 1-888-4STROKE, 1-888-478-7653, or visit www.stroke.org. or www.amhrt.org or www.heart.org/prevention
BIAA - Brain Injury Association of America
To advance awareness, research, treatment, and education and to improve the quality of life for all people affected by brain injury. BIAA serves people of all ages who have sustained a traumatic or Acquired brain injury from many causes, including Strokes.
There are chapters in each state. BIAA in each state – Access by BIAA (name of state) May access national website at: www.biausa.org
National Toll-Free Number – 1-800-444-6443
Centerwatch - https://www.centerwatch.com
Since 1994, CenterWatch is a recognized global leader in providing clinical trials information. Millions of patients and caregivers start their search for clinical trials with CenterWatch, with one of the largest clinical trial databases on the internet. Its mission is to be the leading source of clinical trials information for both clinical
research professionals and patients.
CenterWatch was the first Internet site to publish detailed information about active clinical trials that could be accessed by patients and their advocates.
CureLauncher - http://www.curelauncher.com
Michigan-based CureLauncher is the developer of a patent-pending, clinical trial matching service and has entered an exclusive partnership with the National Stroke Association—an educational, prevention and advocacy group for individuals, their families and healthcare professionals confronting health issues
related to strokes.
National Stroke Association at present has a direct link to this program who can access CureLauncher’s web site http://www.curelauncher.com, where specially
trained relationship managers help individuals find a clinical trial that may offer access to a new diagnostic test, t treatment or rehabilitative approach.
Institute of Neurological Recovery® (INR®)
The Institute of Neurological Recovery® (INR®), specializing in the use of its patented anti-inflammatory treatment for selected neuroinflammatory disorders, is the only medical facility of its kind in the world. With clinical experience treating thousands of patients, originating from every inhabited continent in the world, and multiple scientific publications, the INR offers patients and families new hope, even years after stroke or traumatic brain injury.
1877 S Federal Hwy
Suite 110
Boca Raton, Fl 33432
(561) 353-9707
National Stroke Association - http://www.stroke.org
# 1-800-787-6537 – Stroke Information Hotline
The National Stroke ssociation (NSA) is a national, non-profit, voluntary health organization dedicated to reducing the incidence and impact of stroke by changing the way it is viewed and treated.
The NSA also offers a stroke information hotline and provides a variety of
materials including reports, brochures, pamphlets, videos, audiovisual aids, and a quarterly newsletter.
9707 East Easter Lane
Englewood, Colorado 80112-3747
NINDS - National Institute of Neurological Disorders and Stroke
NINDS is a part of the Federal Government’s National Institute of Health (NIH) whose primary responsibility is to carry out research on disorders of the brain and nervous system. Their work includes the acute phase of stroke and the restoration of function after the stroke. The NINDS also supports research on ways to enhance repair and regeneration of the central nervous system. Scientists who are funded by the NINDS are studying how the brain responds to experience or adapts to injury by reorganizing its function (plasticity). Other NINDS scientists are looking after brain reorganization after a stroke and are looking at how certain kinds of rehabilitation techniques can stimulate the brains plasticity which will in turn improve motor function, in order to decrease disability.
BRAIN
P.O. Box 5801
Bethesda, Maryland 20824
(800) 352-9424
www.ninds.nih.gov
NORD - The National Organization for Rare diseases
NORD, a 501(c)(3) organization, is a patient advocacy organization dedicated to individuals with rare diseases and the organizations that serve them. NORD, along with its more than 300 patient organization members, is committed to the identification, treatment, and cure of rare disorders through programs of education, advocacy, research, and patient services.
NORD has a large quantity of information geared to Stoke Victims as well as to the causes and their associated treatment. The Medication Access Program to help patients obtain lifesaving or life-sustaining medication they could not otherwise afford. These programs provide medication, financial assistance with insurance premiums and co-pays, diagnostic testing assistance, and travel assistance for clinical trials or consultation with disease specialists.
NORD – National Organization For Rare Disorders
https://rarediseases.org/organizations/national-stroke-association/
P.O. Box 8547
Silver Springs, Maryland 20907-8547
(800) 358-9295
www.ahrq.gov
10801 Rockville Pike
Rockville, Maryland 20852 – 3279
(800) 638-8255
www.asha.org
7751 W. Flamingo Rd
Suite A-100
Las Vegas, Nevada 89147
(702) 804-6555
cnsnevada.com
230 West Monroe Street
Suite 1800
Chicago, Illinois 60606 – 4802
(312) 726-6200
(800) 221-6827
www.easter-seals.org
29 John Street
Suite 1103
New York, New York 10038
(800) 922 4622
www.aphasia.org
1010 Wayne Avenue
Suite 800
Silver Springs, Maryland 20910-5633
(800) 346-2742
www.naric.com
600 Market Street
Suite 600
San Francisco, California 94104
(415) 434-3388
(800) 445-8106
www.caregiver.org
10400 Connecticut Avenue
Suite 500
Kensington, Maryland 20895-3944
(301) 942-6430
(800) 896- 3650
www.nfcacares.org
63 West Main Street
Freehold, New Jersey 07728
(800) 838-0879
www.wellspouse.org
Support Groups
There are countless groups around the country that address the public threat of stroke and its related terms, CVA, Cerebral Hemorrhage, Cerebral Thrombosis.
The following groups are general stroke resources most of which have ties to national groups; these may be helpful in helping you find local resources. There
are others which we can add to his list at any time. If you would like us to add a particular group, please contact me and I would be more than happy to add any
positive resource to this list.
Science Direct – Resource – Music Therapy
Elsevier helps researchers and healthcare professionals advance science and improve health outcomes for the benefit of society.
Publisher Relations looks after the relationships with all third parties such as publishers, societies, patent offices and funding agencies who deliver content for inclusion in a wide range of Elsevier electronic database products and solution services.
State-Wide Programs
Each State has a variety of resources listed for people to have easy access to the services they need. You can access most states main resource sites by searching for: www.(Name of State).gov
Types of programs available for individuals with Brain Injuries or Strokes in most states: (Many have programs for Stroke as well as ABI (Acquired Brain Injuries), so look
under both of those categories.) Information on the following topics is available:
Insurance and financial concerns
Federal Insurance and Financial Assistance Programs
Affordable Care Act
Medicare – medicare.gov
Social Security Income
Statewide Insurance and Financial Assistance
(Name of State) Health Insurance
Worker’s Compensation
How to select a rehabilitation Program
Specific Conditions in Rehabilitation
Blind and Visually Impaired
Deaf and Hearing Impaired
State of _________ Brain Injury Services
Office of Substance Abuse and Mental Health
Health and Human Services
Adult and Child Protective Services
Aging and Disability Resources
Crisis Support Services
Community Action Agencies
Employment Programs
Hospitals
Library Services
Recreation
Transportation
Veteran’s Affairs