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UAMS Seeks Stroke Patients for Study on Preventing Falls
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Arkansas specific disease resources will be listed tomorrow. Check back for those. Here are some resources related to specific diseases/conditions which may be of interest to you. Please feel free to add others in the comments section.
ALS Association: Provides help to ALS patients and their families through research, patient and community services, public education, and advocacy. Includes a nationwide network of 30 certified ALS clinics which provide state-of-the-art, multidisciplinary ALS care and services. (800) 782-4747
Alzheimer’s Association: Provides reliable information, care consultation and supportive services for dementia caregivers through state and local chapters. The website also includes an interactive tool, CareFinder, which helps families to:
• Recognize dementia care
• Plan and pay for care
• Communicate with care providers
• Find local support and resources
(800) 272-3900
http:/ / www.alz.org
Alzheimer’s Disease Cooperative Study (ADCS):Conducts clinical trials on promising medications designed to improve cognitive functioning, decrease behavioral disturbances, slow the rate of decline, or delay the onset of Alzheimer’s disease.
Alzheimer’s Disease Education & Referral (ADEAR) Center - Alzheimer’s Disease Clinical Trials Database: Online resource provides current, comprehensive information on Alzheimer’s disease and caring for someone with the disease. Includes a database of clinical trials.
(800) 438-4380
http:/ / www.nia.nih.gov/ Alzheimers
Alzheimer Research Forum: Online resource reports on the latest scientific findings, creates and maintains public databases of research data, and produces discussion forums.
American Brain Tumor Association: Offers programs and services to meet the needs of brain tumor patients and their families such as a monthly e-bulletin with tips on living and coping, support groups and in-person consultation services from social work professionals.
(800) 886-2282
American Cancer Society: Provides a national call center, publications and community programs and services for cancer patients and their caregivers. (800) 227-2345
American Chronic Pain Association: Offers patients and their families resources to better manage chronic pain their lives including support groups, videos, and coping tips.
(800) 533-3231
American Diabetes Association: Provides information and other services to people with diabetes, their families, health professionals and the public.
American Heart Association: Provides credible heart disease information for effective prevention and treatment of cardiovascular diseases and stroke.
http:/ / www.americanheart.org
American Kidney Fund: Provides advocacy, information about prevention, and health education concerning Kidney disease. Also, offers limited financial assistance for the following programs:
• Health Insurance Premium Program
• Medicare Part D
• Safety Net
(800) 638-8299
American Pain Foundation: Serves as an information clearinghouse and resource center for people with pain, their families and their caregivers, the general public, health care professionals, policymakers, and the media. (888) 615-7246
http:/ / www.painfoundation.org
American Parkinson Disease Association, Inc. (APDA): Supports research, provides patient and caregiver support and coordinates 65 chapters and 57 information & referral centers.
(800) 223-2732
http:/ / www.apdaparkinson.org
American Stroke Association: A division of the American Heart Association, provides information and referrals to stroke survivors and their caregivers through the Stroke Family Warmline. (888) 478-7653
http:/ / www.strokeassociation.org
Arthritis Foundation: Provides a large number of community-based services nationwide to make life with arthritis easier, including: support groups, informational and exercise classes and free educational brochures and booklets.
Association for Frontotemporal Dementias (AFTD): Promotes and funds research, and provides information, education and support to people with FTD and their caregivers. (866) 507-7222
Brain Injury Association of America: Serves as a clearinghouse for information and resources on brain injury. Operates a Family Helpline for families of brain injury patients seeking assistance, education and support. (800) 444-6443
Brain Injury Resource Center: Serves as a clearinghouse of scientific and medical information about brain injuries. Also provides information and consultations for additional resources.
(206) 621-8558
BrainLine: National multimedia project offering information and resources about preventing, treating, and living with traumatic brain injury (TBI). Its website includes a series of webcasts, an electronic newsletter, and a section on resources for people affected by TBI and their families.
Brain Tumor Society: Provides information about brain tumors and caregiver support services to patients and families. Offers one-to-one support over the phone or email regarding decisions for treatment. Also offers a list of support groups located throughout the United States and Canada.
(800) 770-8287
CancerCare: Provides support services for anyone affected by cancer including limited financial assistance grants for:
• Transportation
• Child care
• Home care
Patient must currently be receiving treatment for cancer. (800) 813-4673
Cancer Information: A program of the National Cancer Institute, CIS provides personalized, confidential responses to specific questions about cancer. Information specialists are available by telephone and online. (800) 422-6237
http:/ / cis.nci.nih.gov
Defeat Diabetes Foundation: Provides information to promote awareness, prevention and early detection of diabetes. Offers free online monthly newsletter and screening tool. A listing of diabetes education programs and support groups in all 50 states is available.
http:/ / www.defeatdiabetes.org
Healing Exchange BRAIN TRUST: Offers more than a dozen online support groups and resources about brain tumors and related conditions. Anyone caring for someone who meets care recipient eligibility. Anyone with a brain tumor.
Hungtinton’s Disease Advocacy Center: Provides information on Huntington’s disease and resources for caregivers, including a list of online support groups.
Huntington’s Disease Society of America: Provides support, information and educational services to Huntington’s disease families through a network of volunteer-based chapters and affiliates.
(800) 345-4372
Huntington’s Disease Support Information: An online service that offers state-specific information and resources on Huntington’s disease for individuals and caregivers.
http:/ / huntingtondisease.tripod.com/ statebystatesupport/
Hydrocephalus Association: Offers services and resources to patients, their families and professionals including personal support and educational materials about hydrocephalus.
(888) 598-3789
http:/ / www.hydroassoc.org
Leukemia and Lymphoma Society: Operates a call center that provides information on local resources as well as support and guidance. Provides financial assistance to qualified blood cancer patients, information about leukemia and lymphoma, and other information for patients and their families.
(800) 955-4572
http:/ / www.leukemia-lymphoma.org
Lewy Body Dementia Association, Inc. (LBDA): Provides scientific, clinical, and caregiver information on Lewy Body Dementia and offers phone and email help lines for caregivers.
(800) 539-9767
http:/ / www.lewybodydementia.org
Multiple Sclerosis Foundation: Offers a national toll-free helpline, online forum, and a support group directory. (888) 673-6287
http:/ / www.msfacts.org
National Brain Tumor Foundation: Provides information and support for brain tumor patients, family members, and healthcare professionals regarding treatment options and community resources. It also offers a range of opportunities to connect with other patients or caregivers through the Internet, by phone or in-person. (800) 934-2873
National Diabetes Information Clearinghouse: An information service of the National Institute of Diabetes and Digestive and Kidney Diseases, the clearinghouse responds to inquiries about diabetes, provides referrals to health professionals, and offers publications about diabetes. (800) 860–8747
http:/ / diabetes.niddk.nih.gov
National Kidney Foundation: Supports families affected by Kidney disease and advocates for the increase of all organs for transplantation. Also, provides current news, resources, and comprehensive information about kidney disease, connection to journals and newsletters, and zip code search to find local kidney organization. (800) 622-9010
National Multiple Sclerosis Society: Promotes research, provides education about the disease, and organizes a wide range of programs for people newly diagnosed with MS or those living with the disease over time. (800) 344-4867
http:/ / main.nationalmssociety.org
National Organization for Rare Disorders (NORD): Provides information about rare diseases, referrals to patient organizations, advocacy for the rare-disease community, and Medication Assistance Programs that help patients obtain certain drugs they could not otherwise afford.
(800) 999-6673
National Pain Foundation: Serves as an on-line educational and support community for persons in pain and their families. Also offers an online database of pain care providers that is searchable by name, specialty, location, pain condition, and/or treatment options.
http:/ / www.nationalpainfoundation.org
National Stroke Association: Provides information and resources to stroke survivors and their families including stroke support groups and a recovery guide. (800) 787-6537
Parkinson’s Disease Foundation: Provides a toll-free line and an online resource center to answer questions regarding Parkinson’s disease. (800) 457-6676
The HD Lighthouse: Provides up-to-date information about research on the treatment, care, diagnosis of Huntington’s Disease. Also offers online support group and chatroom.
The Wellness Community: A nonprofit organization dedicated to helping people with cancer and their loved ones. Offer free services and programs including support groups, stress reduction programs and educational workshops through local chapters in communities across the country.
(888) 793-9355
http:/ / www.thewellnesscommunity.org
Young Onset Parkinson’s Association: Online resource includes information on the disease, support groups, a chat room, and other online group forums for young adults with Parkinson’s disease and their families.
http:/ / www.youngparkinsons.com
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Today I thought I would share some resources that are related to the legal aspects of caregiving. These links are associated with wills, work, disabilities, and other forms of advocacy. Please feel free to notify me of others which I may have missed. I would like this to become as comprehensive as possible.
Arkansas Adult Protective Services: Adult Protective Services assist vulnerable and elder adults to stop and prevent abuse, neglect, or exploitation. Anyone can make a report about suspected abuse to the Hotline. Adults age 60 and older and adults with disabilities.
(800) 482-8049
http:/ / www.aradultprotection.com
Arkansas Area Agencies on Aging (AAA): AAAs offer aging services, including:
• Information and assistance
• Care management
• Nutrition services (i.e., Meals on Wheels)
• Legal assistance
• Services for family caregivers through the Family Caregiver Support Program (FCSP)
(866) 801-3435
http:/ / www.arkansas.gov/ dhs/ aging/ aaamap.html
Arkansas Legal Services Partnership: Non-profit organization advocates for the legal rights of low income residents of Arkansas. Offers the following services:
•Legal representation
•Legal hotlines by county
•Education (elder, family, consumer law)
Low income residents of Arkansas
http:/ / www.arlegalservices.org
Arkansas Long Term Care Ombudsman: Ombudsmen investigate complaints made by, or on behalf of, individual residents in long-term care facilities, including nursing homes and assisted living facilities. They also answer questions about the quality of care or financial, physical, or mental abuse in residential facilities. (501) 682-2441
Arkansas People First: Non-profit self-advocacy group run and controlled by persons with disabilities that offers self-advocacy training. Also provides online community chat groups and message boards. Individuals with any type of disability. (888) 488-6040
http:/ / www.arkansaspeoplefirst.org
Arkansas Volunteer Lawyers for the Elderly, Inc. (AVLE): Organization provides free legal assistance and services to low income older adults. Services are not available in the following counties: Pulaski, Saline, Faulkner, Lonoke, Jefferson, Garland, Hot Spring, and Clark.
Multiple requirements:
•Adults age 55 and older
•Low income
800-999-2853
Arkansas Volunteer Lawyers for the Elderly
Disability Rights Center (DRC): Non-profit organization advocates on behalf of people with disabilities in Arkansas. Also offers the following programs:
• Representation in cases of complaints filed against the Department of Vocational Rehabilitation
• Advocacy for individuals with Traumatic Brain Injury (information, referral, and legal representation)
• Protection & advocacy for beneficiaries of Social Security
• Protection & advocacy for individuals with Developmental Disabilities
Eligibility varies by program. (501) 296-1775
http:/ / www.arkdisabilityrights.org
Senior Health Insurance and Information Program (SHIIP): Assists individuals and families with eligibility questions and problems related to Medicare, including prescription drug coverage under Medicare Part D, managed care, long-term care planning, health insurance and other health care issues. (800) 224-6330
http:/ / insurance.arkansas.gov/ seniors/ homepage.htm
AARP (Online Resources): A consumer organization for people 50 years and older. Provides online information about issues related to aging, including:
• Long-term care and retirement
• Financial and legal information
• Resources on family caregiving
• Internet resources on aging
(888) 687-2277
http:/ / www.aarp.org
Aging with Dignity: Provides older adults and their family members with practical information, advice and legal tools to ensure wishes at end-of-life will be respected, including the Five Wishes Living Will document.
American Bar Association (ABA) - Commission on Law & Aging: Provides an online guide to finding legal services in each state, including lawyer referral, court information, state laws and legal rights.
http:/ / www.abanet.org/ aging/ home.html
To find legal help in your state, visit:
http:/ / www.abanet.org/ legalservices/ findlegalhelp/ home.cfm
Caring Connections: A program of the National Hospice and Palliative Care Organization that offers free resources and information (online and over the phone) about end-of-life care and services. Includes information about:
• Advance care planning
• Financial assistance
• Hospice care and grief
(800) 658-8898
http:/ / www.caringinfo.org
Disability and Business Technical Assistance Centers (DBTAC): Provides information, training and technical assistance and a free hotline on the Americans with Disabilities Act (ADA).
(800) 949-4232
Family and Medical Leave: The Family and Medical Leave Act (FMLA) is a federal law that allows employees to take up to 12 weeks of unpaid leave per year to care for themselves, or for a seriously ill family member, or for a new child without losing their jobs or health care insurance. Some states have additional benefits, such as paid family leave. Eligible workers must:
• Work at companies with 50 or more employees at or within 75 miles of the work site
• Have worked at least 1,250 hours during the 12-months prior to taking leaveWorkers can take leave to care for:
• An ill spouse, child, or parent (some states include additional family members)
• A new baby or adopted child
• Themselves when they have a serious illness Department of Labor:
(866) 487-9243
http:/ / www.dol.gov/ esa/ whd/ fmla
National Partnership for Women and Families:
National Partnership for Women
LawHelp.org: Provides online directory of nonprofit legal services providers throughout the country. Anyone, with special attention on people living on low or moderate income.
Legal Services Corporation (LSC): LSC, also called Legal Aid, is a government resource that provides legal assistance to low income Americans. The LSC provides an online listing of member organizations that provide free legal assistance to eligible clients.
Must be low income (income limits vary by program)
Medicare Rights Center: Nonprofit organization that provides direct assistance to people with questions or concerns about Medicare. Information is provided about Medicare drug coverage, health plan options, and rights and benefits. Assistance is available online or by a telephone hotline.
(800) 333-4114
http:/ / www.medicarerights.org
National Academy of Elder Law Attorneys (NAELA): Provides an online directory of its members to locate attorneys that deal with legal issues affecting elderly and disabled adults, including:
• Public benefits
• Probate and estate planning
• Guardianship and conservatorship
• Health and long-term care planning
National Association of County Veteran Service Officers (NACVSO): Provides assistance in obtaining veterans’ benefits and answers questions regarding rules and regulations concerning veterans. Website provides directory of Veteran Service Officers across the country.
Family members of a veteran
http:/ / www.nacvso.org
National Center on Elder Abuse: Offers an online “State Resource Directory for Elder Abuse Prevention” which includes help lines and hotlines to report suspected elder abuse, neglect, or exploitation. Also includes state laws and regulations that protect older adults.
(202) 898-2586
National Citizens’ Coalition for Nursing Home Reform: Offers consumers, families and advocates resources and information on long-term care including; an overview of each state’s nursing home system and licensing agencies, and a consumer’s guide to choosing a nursing home. (202) 332-2276
http:/ / www.nursinghomeaction.com
National Long-Term Care Ombudsman Resource Center: An online resource that defines the role of a long-term care ombudsman and how he/she can help families of nursing home residents. It also includes a state-by-state directory of long-term care ombudsmen. (202) 332-2275
Patient Advocate Foundation: Provides mediation between patients and their employers and/or creditors to resolve insurance, job retention and/or debt crisis relating to the patient’s condition.
(800) 532-5274
WorkLife Law (WLL): WorkLife Law operates a hotline which provides legal assistance to caregivers who encounter discrimination in the workplace due to their family responsibilities. Services include:
• Legal advice/assistance
• Advocacy
• Attorney referrals
(800) 981-9495
worklifelaw.org/EmployeeHotline
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This past weekend I was interviewed by Steve Brawner of Arkansas Medical News. He is working on a story regarding Arkansas medical bloggers. Arkansas’ own stitcher extraordinaire, Dr. Ramona Bates was the first. Her blog, Suture for a Living, focuses on her occupation as a plastic surgeon as well as her stitching past time as a quilter. Other Arkansas bloggers include Elizabeth Schneider, a pathologist at Baptist Health, who writes Methodical Madness and John House whose runs Health By Dr. House. I was surprised to be part of this interview, but even more surprised that there are so few of us. If you are a medical blogger located in Arkansas, show yourself! We want to get to know you.
P.S. The article comes out in the August edition.
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