United Access sells, services and rents wheelchair accessible vehicles.
American Dog Trainers Network
East Coast Assistance Dogs
Northwest Aide Dog Foundation
National Education for Assistance Dog Services
Service Dog FAQ
Wolf Packs – Service Dogs Directory
BioDerm’s Liberty for male bladder control
Bladder control summary articles from medical websites:
Toilet adaptors that turn your toilet into a “bidet”:
http://www.totousa.com – select Consumer and then Toilets
National MS Society webpage with information and brochure
Intermittent self catheterization information and procedures for women, for men
Catheters for intermittent use – Allegro Medical or Vitality Medical
Poise and Depends briefs and pads; Serenity products; Tena products
Medtronic website with information
Bladder Control Forum
Support groups and urology journals
Canes, Walking Sticks and Walkers
Bruce Medical Supply
Canes Canada Stylish daily use and collectors’ canes and walking sticks.
Canes Galore Claims to have the largest assortment of canes online.
Exerstrider Poles Fitness walking poles.
Fashionable Canes Big variety of canes
House of Canes Impressive selection plus tips on selecting the right cane, send in your own fabric for a fabric-covered cane, highly recommended by community.
Liberty Cane Features special features including an Assist Pin
Leki Hiking and Trekking Poles
Mayo Clinic – Choosing What’s Right How to select the right type of device.
Ray’s Cane Co Unusual hand-made wooden walking canes, made to order.
Seat To Go
The Walking Cane Store
Walking Equipment Variety of walking aids, a “buying guide” provides information on how to match a walking device with personal needs.
Career and Employment
DRM Regional Resource Directory Link to find the vocational rehabilitation program in your state (every state has a federally funded agency that administers vocational rehabilitation, supported employment and independent living services).
Vocational Evaluation and Work Adjustment Association Non-profit professional association whose members serve people to match them with training, careers, and employment.
JobAccess A place where people with disabilities can seek employment, also has a Resume Builder.
Do It! Disabilities, Opportunities, Internetworking, and Technology works to increase the participation of the disabled in academic programs and careers.
The Job Accommodation Network International, toll-free consulting service providing information about job accommodations and the employability of people with functional limitations.
A host of Disability Links are found at Kansas Commission on Disability Concerns – click on the “Resources Link” on the left
Volunteer Match Committed to bringing volunteers and service organizations together on behalf of community needs nationwide.
National Disability Mentoring Day Promotes career development for students and job-seekers with disabilities through job shadowing and hands-on career exploration.
Asyst Communication and home control products.
Bruce Medical Supply Features speech aids.
ChatterVox Voice amplification system.
Communication aid Manufacturer’s Association Non-profit organization representing the world’s leading manufacturers of AAC software and hardware technology.
Communication Independence for the Neurologically Impaired, disseminates information about communication technology.
Dynavoxtech Researches new augmentative techniques and communication interfaces.
E-trioloquist PC-based communication aid, serves as an electronic voice for those who can’t speak on their own.
International Society for Augmentative and Alternative Communication
Motor Speech Disorders Treatment.
VitalStim therapy – only neuromuscular electrical stimulation that is cleared by the Food and Drug Administration to treat dysphagia.
Brain Facts Primer on the brain and nervous system (pdf file)
Genetics Home Reference from National Institutes of Health
Center for Drug Evaluation and Research
Clinical Trial Process – FAQ
EMG and NCV tests from the Muscular Dystrophy Foundation
Muscle biopsy tests from the Muscular Dystrophy Foundation
Exercise and Muscle Directory: Comprehensive site that describes all the muscles and best exercise for each muscle. Gives exercise instructions, photos and video clips.
Overview on Spasticity
NOVA broadcast show on gene therapy http://www.pbs.org/wgbh/nova/sciencenow/3210/02.html
Emergency Response and Assistance Systems
Avoiding Problems with PERS Consumer information.
Personal Emergency Response Systems An FTC informational site created in cooperation with the American Association of Retired Persons.
Caregiver Network Based in Toronto Canada; provides an information source for caregivers and a bulletin board.
Family Caregiver Alliance FCA is a public voice for caregivers, illuminating the daily challenges they face, offering assistance and championing their cause through education, services, research and advocacy.
Through the Looking Glass TLG has pioneered clinical and supportive services, training and research serving families in which one or more members – whether parent or child – has a disability or medical issue.
Administration on Aging A U.S. Department of Health and Human Services Program that calls for states, working in partnership with local area agencies, to offer direct services to meet the range of caregivers’ needs.
Well Spouse Association Well Spouse is a national, not for profit membership organization which gives support to wives, husbands, and partners of the chronically ill and/or disabled. There are support groups in many states and a quarterly newsletter.
Exceptional Parent Magazine Information, support, ideas, encouragement and outreach for parents and families of children with disabilities and for professionals.
Parents with Disabilities Online Guide to resources for people with disabilities.
Genetic Testing for HSP
Athena Corp. www.Athenadiagnostics.com – (800) 394-4493
Invitae Corp. www.Invitae.com – (800) 436-3037
AbleData’s Informed Consumer’s Guide to Accessible Housing
Accent Products “Ideas for Making Your Home Accessible” booklet.
Accessible apartments National database of accessible apartments.
Accessible Bathroom Fixtures from the Bob Vila Website.
Accessible Bathroom Plans from the Bob Vila Website.
Accessible Housing Plans Accessible Versions of 77 UDA Ideal Home Plans.
Access Industries elevators, stairway lifts, wheelchair lift
Acorn Stair lifts
ALFA Consumer Information and Resources Assisted Living Federation of America provides a consumer checklist and other information about assisted living.
Assisted Living INFO Tools to help evaluate needs, facility selection tips, and a map-based search engine to find a facility near family and friends. Click on the “Consumers’ Corner” link for lots of great resources.
Assisted Senior Living – Search over 50,000 facilities to find unbiased information about their care.
Bruno Stair lifts Fall Prevention
Home Modification Publication of the National Rehabilitation Information Center.
Iowa State University Extension Home Modification and Repair.
Iowa State University Extension Universal Design and Accessible Housing Resources.
National Resource Center on Supportive Housing and Home Modification
NCAL Consumer Guide to Assisted Living The National Center For Assisted Living represents the assisted living industry’s perspective.
Sizing Up Assisted Living CNN article about assisted living.
Universal Design – Does Your Home Fit Your Needs? University at Buffalo Center for inclusive design
Wheelchair Accessible Homes Classified ads for accessible housing, find realtors who specialize in accessible housing.
Legal Information, Resources and Services
Benefits Check-Up is the nation’s most comprehensive Web-based service to screen for benefits programs for seniors and disabled citizens with limited income and resources.
Govbenefits online screening tool is free, easy-to-use, and completely confidential. They do not require your name, phone number, Social Security number, or any other information that could be used to identify you. This site is designed to ensure that you are getting all the benefits available to you.
Handi-Ramp Foundation will assist with funding to help those people who cannot afford to build ramps and lifts at their home. The Foundation was formed out of a need to provide services for people with disabilities and their families. Insurance companies (including Medicare and Medicaid) will readily pay thousands of dollars for wheelchairs and scooters for their clients, but they will not pay for any home modifications. The result is that thousands of people become prisoners in their own homes while others cannot visit family and friends.
Home Access Program helps individuals and families find realtors who can assist in the search for a handicap accessible home or consultants who can modify a current home to meet the needs of people (and family members) with a disability.
Americans with Disabilities Act homepage
American Association of People with Disabilities
Americans with Disabilities Act Document Center ADA Statute, Regulations, ADAAG (Americans with Disabilities Act Accessibility Guidelines), Federally Reviewed Tech Sheets, and Other Assistance Documents.
Code of Federal Regulations A codification of the general and permanent rules published in the Federal Register by the Executive departments and agencies of the Federal Government.
ADA Enforcement – this is the EEOC (Equal Employment Opportunity Commission) website with numerous links regarding discrimination under the ADA
Genetic Discrimination Resources – enter “genetic discrimination” in the search box at this site (National Society of Genetic Counselors)
National Patient Advocate Foundation Policy organization committed to national and state initiatives that enhance and ensure patients’ access to care and reimbursement.
American Association of People With Disabilities The largest national nonprofit cross-disability member organization in the US, dedicated to ensuring economic self-sufficiency and political empowerment for Americans with disabilities, works in coalition with other disability organizations.
Consortium for Citizens with Disabilities A coalition of 100 national disability organizations working together to advocate for national public policy that ensures the self determination, independence, empowerment, integration and inclusion of children and adults with disabilities in all aspects of society
Ragged Edge Online News regarding disability issues.
Social Security Disability Questions
MDAThe Muscular Dystrophy Association has a number of information articles on tax deductions. Type “tax deductions” into the search engine.
Disability Resources Monthy
Exceptional Parent Magazine
New Mobility Magazine
Ragged Edge Magazine
Self Care Now Booklets
Medical Products and Services
Ableware Independent living products
Active Forever Aids to daily living.
Thyssenkrupp Access Stairway lifts, wheelchair lifts, elevators
Active Forever Variety of daily living aids
Assistive Technology Library of Alaska Assistive devices plus manufacturing of special items
Assistive Technology Manufactures durable medical equipment for the home
Bath Lift is a battery powered lift chair designed to help with safe transfers in and out of the bathtub.
Bruce Medical Supply Leading health and medical supplier.
Disability Products Postcards Product information source.
Dr. Leonard’s Wide variety of healthcare products.
Dynamic Living Aids to daily living.
Dysphagia Resource Center Resources for swallowing and swallowing disorders
Easy Choice Medical offers medical equipment for those with limited mobility or disabilities – wheelchairs, aids to daily living, and bath safety.
M.O.M.S. – Mail Order Medical Supply Wide variety of products
Mobility, Inc. Mobility assistance devices.
North Coast Medical Aids to daily living.
Physical Therapy Information on neurological physical therapy
Sammons Preston Aids to daily living
The Boulevard Directory for disability-related products and services
http://www.grabbarspecialists.com/ Grab Bar Specialists offers huge collection of safety equipment meeting all ADA guidelines
National Center on Physical Activity and Disability exercise and recreational videos:
National Center on Accessibility Study – http://ncaonline.org/research/volunteer.shtml
Buckmasters Disabled Services Comprehensive site for disabled hunters
Disabled Sports USA
Wheelchair Basketball Federation
Canadian Wheelchair Basketball Federation
Wilderness Inquiry Outdoor Adventures
Adaptive Sports Center
Three wheel bike
Disabled Gardening Garden tools for the disabled
New Mobility- encourages the integration of active-lifestyle wheelchair users into mainstream society.
Raised Bed Gardening
Gardening for the Disabled Products (click Gardening link on left Navigation column)
Outdoor Buddies (Colorado)
BIRIA, Easy Boarding Bike
Ability Awareness A non-profit organization dedicated to enhancing the quality of life for people with disabilities through housing, education, employment, media and volunteer opportunities.
ALS Association Promotes fund raising for research and provides referrals, equipment loan programs and assistance to patients.
American Association of People with Disabilities The largest national nonprofit cross-disability member organization in the United States.
American Speech-Language-Hearing Association Provides information about communication disorders and serves as a referral system.
Communication Independence Information about communication technology.
Disability Info Web-zine dedicated to advancing an exchange of information and research about the international independent living movement.
Disability Resources Nonprofit organization established to promote and improve awareness, availability and accessibility of information.
Easter Seals Helps children and individuals with disabilities and special needs.
Genetic Alliance International of millions of individuals with genetic conditions and more than 600 advocacy, research and health care organizations.
Institute on Independent Living Serves self-help organizations of disabled people who work for equal opportunities, self-determination and self-respect, offers training materials, technical assistance and information on personal assistance, advocacy, access, legislation and peer support.
Mountain States Genetics Network Medical genetics knowledge and resources.
Muscular Dystrophy Association PLS and HSP are not included in the diseases covered by the national MDA. However, many local MDA groups do provide service and resources for those with HSP and PLS. Check with your local MDA office.
National Ataxia Foundation This organization welcomes people with HSP although HSP is not one of the Ataxia disorders, 45 affiliated Chapters offer support group meetings (note: HSP is frequently initially diagnosed as Ataxia).
National Institute on Deafness and other Communication Disorders
National Institutes of Neurologic Disorders and Stroke
National Organization for Rare Disorders Federation of voluntary health organizations, committed to the identification, treatment and cure of rare disorders.
United Spinal Association Provides service to people with spinal cord injury and disease
World Wide Education and Awareness for Movement Disorders Comprehensive resource for movement disorder information and activities.
Sources of free or low cost drugs
Cost containment research
Cost cutting advice
List of resources on the new Medicare drug benefit
National Organization for Rare Disorders
Patient assistance programs list for those without insurance
Drug price comparison
The Medicine Program
Stem Cell Research
FAQ about stem cells (Stem Cell Research Foundation)
Stem cell information (NIH)
Stem cell research news (DataTrends)
Stem cell research news (Yahoo)
Access Tours Specializes in all-accessible tours
Access-Able Travel Tips plus a travel database with accessibility information.
Accessible Travel Moss Rehab Resource Net.
Accessible Vacation Home Exchange Swap homes with other persons with similar needs in other parts of the world.
Ford Mobility Motoring Program Provides financial assistance up to $1,000 for the installation of adaptive equipment (any device that makes it easier for persons with disabilities to drive or to be transported in a vehicle) to a new 2002, 2003 or 2004 Ford, Lincoln or Mercury car, van or light truck.
Accessible motor homes – Click “Products” at the top, then scroll down to select “Commercial and Specialty Vehicles” under “Other Products” and then click “Ability Equipped”
Adaptive Adventures Outdoor sports and recreation.
Adaptive Sports Center Non-profit organization that provides year-round recreation activities for people with disabilities and their families.
Book: Room at the Inn – Inns and B&Bs for Wheelers and Slow Walkers, by Candy Harrington
Cruise Ship Assist Rental of mobility equipment for use on cruises
Disability Travel Designs accessible holidays and escorts groups on vacations for slow walkers, wheelchair travelers, their families and their friends.
Emerging Horizons Magazine about accessible travel.
Freedom Motors Alternatives to a full-size handicapped lift van or side entry lowered floor minivan.
Global Access Disabled Travel Network; tips, links, articles, resources, message board.
Infinitec Accessible Travel Information Nice section on accessible travel.
Scoot Around Scooter and Wheelchair rental in 500 locations including for cruises
Society for Accessible Travel Provides information on air, rail and bus travel, hotels and services worldwide.
Wilderness Inquiry Outdoor adventure trips.
Aviation Consumer Protection – Accessibility accommodations
Aviation Consumer Protection – Information for air travelers with a disability
Wheelchair Escapes – Specializes in assisting the mobility challenged traveler, whether making flight, hotel, accessible van rentals, accessible cruise reservations and accessible tours in the various ports throughout the world.
Wheelchair Getaways Rent a wheelchair or scooter, accessible van rentals
Segway Tours Directory of guided tours featuring the Segway
Accessible vacation home exchange Swap your house for another accessible home for a vacation
Article Travel tips for traveling by airplane with a wheelchair or scooter
Article on traveling with a battery in your scooter or wheelchair
Books on Travel (when you order through the SPF Shopping Mall link to Amazon, a portion of your order is donated to SPF):
AAA’s Barrier-Free Travel Hawaii
Access for Disabled Americans – A Guide for The Wheelchair Traveler
Around the World Resource Guide, Fifth Edition 2003
Able to Travel – True Stories by and for People With Disabilities
Access America Guide to the Rocky Mountain National Parks
Access to Air Travel for People With Reduced Mobility
Accessible Trails in Washington’s Backcountry – A Guide to 85 Easy Outings
Barrier-Free Travel: A Nuts and Bolts Guide for Wheelers and Slow Walkers
Berlitz Complete Guide to Cruising and Cruise Ships 2004 – includes section for the physically challenged.
California Parks Access – A Complete Guide to the State and National Parks for Visitors With Limited Mobility
Easy Access to National Parks – The Sierra Club Guide for People With Disabilities
Exotic Destinations for Wheelchair Travelers – Hotel Guide to the Orient Hong Kong MacAu Singapore Taiwan Thailand
Fodor’s Great American Vacations for Travelers With Disabilities (2nd Ed) – With Complete Accessibility Information on Hotels, Restaurants and Attractions
Handicapped in Walt Disney World : A Guide for Everyone
Hawaii – A Guide for The Wheelchair Visitor
How to Travel-A guidebook for Persons with a Disability
Rick Steves’ Easy Access Europe 2004
Rollin’ on : A Wheelchair Guide to U.S. Cities
The Rough Guide to Travel Health
Travel Access in London : A Guide for Those Who Have Problems Getting Around
Travel for the Disabled : A Handbook of Travel Resources and 500 World Wide Access Guides
Travelability – A Guide for Physically Disabled Travelers in the United States
Traveling…Like Everybody Else – A Practical Guide for Disabled Travelers
Walks in Welcoming Places – Walks in the Northeast for the Not So Young and the Disabled
Wheelchair Around the World
Wheels and Waves – A Cruise-Ferry Guide for the Physically Handicapped
Wheelchairs and Scooters
Friends of Disabled Adults & Children Provides over $8 million each year in equipment and services to the community at little or no cost to the recipients.
AbleProject Mission is to empower people with disabilities and care providers and to locate needed devices faster, easier, and at a competitive price.
Apsco mobility equipment.
Bruce Medical Supply A leading health and medical supplier.
Disabled Dealer Access to new and pre-owned adaptive equipment, services, resources, and events throughout the nation.
Pride Mobility Leading designer and manufacturer of power wheelchairs, electric scooters and life chairs.
Electric three-wheel bikes by Palmer Industries.
Horizon Mobility Mission is to provide assistance, information, and service to seniors and physically handicapped individuals, serves individuals in 19 states.
Mobility and Transportation List.
Pass It On Center A National Collaboration for the Reutilization and Coordination of Assistive Technology
Rascal scooters and powerchairs.
SpinLife Walkers, Wheelchairs, and Mobility Aids Huge selection of wheelchairs, scooters, and accessories.
Wheelchair Accessible Travel Guide Traveling with a wheelchair requires a lot of thought and careful planning. This site is a helpful travel guide.
Wheelchair Junkie Offers lots of helpful information and a message board.
Wheelchair pouches and bags
Wheelchair Travel Cases Protects wheelchairs or scooters from airline damage.
Wheelchairs and Scooters Contains good information about maintenance and how to select a chair, scooter, or dealer.
Abilities Expo Enhancing the Lives of People with Disabilities
Adaptations by Adrian Clothing adapted for wheelchair users
Disability is Natural Public speaker, author, businesswoman promoting “Disability is Natural” theme
Disability Resource Site Disability links and resources
Invisible Disabilities Advocates Site provides links to sites and organizations of several diseases, disorders and conditions, as well as a support board
Life @ Home Provider of home modification products and services to create a healthier living environment through preventative home modifications
Paralysis Community – Join this online community for networking, support and information http://spinal-cord-injury.clinicahealth.com/
www.more-selfesteem.com Learning more about yourself
www.accessiblesociety.org Centers for an Accessible Society
http://en.wikipedia.org/wiki/self_image Self Image Definition
www.coping.org Self Image and other issues such as Loss and Assertiveness
www.sexualhealth.com Sexual Health Network
www.awomansjourney.com Spirituality Resources
We are excited that Giving Tuesday is coming up soon. It is a once a year event and is a perfect accent to the holiday season. Unbeknownst to the commercial world, the holiday season is not about who gets more for me, me, me. It is about that special feeling you get when you know you have really helped out someone you care about or love. It is knowing that the dollar you give today is going to blossom into a million dollars worth of relief from suffering for the people with HSP and PLS. Welcome to Giving Tuesday and we Thank You for your consideration.
When Clinical Trials begin in 2017 it may require as many people as possible for the Clinical Trial to be effective. If you have HSP or PLS, please add your information to our data base so we can keep you informed. We are missing a lot people's email address, so if you just want to add your email address. just enter your name, address and email and we'll add it. That way, we will be able to reach you quickly at a lower cost. Your privacy is very important to us. We will never share any of your information with any individual or company without your permission.
We operate out of the strength of our community, caring friends and sponsors. Your help makes a difference! Our volunteers give many hours of their time annually, and the opportunities to help are as varied as our helpers. Read more.