Links and Resources
Jett Foundation is pleased to recommend these companies that provide vehicles, mobility equipment, and recreational products and services for the Duchenne muscular dystrophy community:
- Ride Away: Ride Away (with 11 East Coast locations) is America’s largest provider of accessible vehicles and vehicle modifications including hand controls, wheelchair and scooter lifts, ramps, raised doors, lowered floors and specialized gas, brake and steering controls. Ride Away provides quality vehicles and superior customer service.
- Liko: Liko provides patient lifts, from compact, lightweight, mobile lifts to high-capacity overhead systems. As a nurse, Christine McSherry, executive director of the Jett Foundation, has worked with many lift devices and finds that Liko lifts are safe and comfortable. Liko also offers a wide assortment of slings, repositioning sheets and other lifting accessories.
- Totally Mobile: Totally Mobile, based out of East Sandwich, MA, provides a full line of mobility and accessibility products, such as wheelchairs, scooters, ramps, and stairlifts, to customers throughout New England. Christine McSherry says its one of the best companies that she has worked with.
- Bretton Woods Adaptive Program: This program provides persons with disabilities an opportunity to enjoy the challenges and rewards of sports and recreation with their family and friends. Hiking, biking, and nature walk programs are offered in the summer, and skiing, snowboarding, and snowshoeing programs are offered in the winter. Visit the Adaptive section of the Mount Washington Resort website or call Sandy at 603-278-3398 for more information. Mount Washington Resort also offers offer handicapped accommodations.
- Freedom Concepts: A child with DMD can enjoy and freedom of riding a bike with a custom-built bicycles by Freedom Concepts. Visit www.Freedomconcepts.com to see their mobility products designed for all ages.
- Wheelchair Recycler: David Heim collects and reuses parts from old, donated, discarded, or broken wheelchairs to build power wheelchairs. Heim’s refurbished wheelchairs are made available at affordable prices to people who have low incomes or who don’t have insurance that will cover the high costs of power wheelchairs.
There are so many resources available to help educate you on your path to learn more information about DMD. We have gathered some of them together here – along with listing links to information within this website. We hope you will take the time to explore these. If there are other links that you would like to share, please email us.
- Individual Education Programs (IEPs)
- Mobility
- Education
- Advocacy
- Medical/Research
- Emotional
- MD Community
- International Organizations
Individual Education Programs (IEPs)
- The Individualized Education Program (IEP):A Blueprint for Ensuring School Success by Christine McSherry, RN, President, The Jett Foundation
- Tips for Writing an Effective IEP: Guide to the IEP from the Office of Special Education Programs
Mobility
- Heads Up
- Mobility International
- Special Needs Advocate for Parents
- Abledata National Assistive Technology Database
- Special Child Items for Sale Bulletin Board
- Disabled Children’s Relief Fund
- Abilitations
- Accessible Threads
- AdaptiveMall.com
- The Boulevard
- Columbia Medical Mfg.
- Davis Made
- Flaghouse
- Freedom Designs
- Haverich Ortho Sport
- Innovative Products
- Leckey Products
- Rehab Designs
- Rifton
- SnugSeat
- Boundless Playgrounds
- North American Riding for the Handicapped Association
- Serena’s Song
- Transporting Children with Special Health Care Needs
- Liberty Motors
- Freedom Motors
- EZ-on-Vest
- National Mobility Equipment Dealers Association
- Adapting Motor Vehicles for People with Disabilities
- Wheelchair Standards Information
- JustMobility.com
- Mobility International USA
- Wheelchair Getaways
- Wheelchair Junkie
- Family Village: Wheelchairs
- Finding the Perfect Fit
- Spin Life
- Pride Mobility
- Invacare
- Convaid
- Levo
- LifeStand
- Permobil
Education
- ToxTown
- Alliance for Technology Access
- Apple Disability Resources
- Microsoft Accessibility
- Rehabilitation Engineering and Assistive Technology Society of North America
- Laureate Learning
- AbleNet
- Exceptional Parent Magazine
- KidSource Online – A Guide to Children’s Literature & Disability
- Books by Joni Eareckson Tada
- Our Kids Book List
- List of Books, Videos, and other references related to SMA
- Special Child
- Woodbine House Books on Disability for Children and Teens
- moonchildren.com
- Family & Advocates Partnership for Education
- School Zone
- Special Ed Links
- Special Education Resources on the Internet
- Parents Helping Parents
- Family Village
- Internet Resources for Special Children
- Institute on Independent Living
- Ability Forum
- KidPower Special Needs Link
- KidNeeds.com
- Social Security Administration
- U.S. Department of Health & Human Services
- U.S. Department of Housing and Urban Development
- The National Information Center for Children & Youth with Disabilities
- Center for Drug Evaluation and Research
- Patient Advocate Foundation
- The HMO Page
- Evaluating Managed Care Plans for Children with Special Health Needs: A Purchaser’s Tool
- ALS Association
- Andrew’s Buddies
- Miracle for Madisonhttp://www.http://www.bookshare.org/://www.bookshare.org/org/A Rinty for Kids
- Disabled Children’s Relief Fund
- Dragonfly Toys
- Genome.gov
- bookshare.org - A great resource for those with disabilities to get books through their computer at no cost.
Advocacy
- Family & Advocates Partnership for Education
- Office of Special Education Programs
- School Zone
- Family Voices
Medical/Research
- Heads Up
- Medicaid Benefits Resource
- Clinical Trials in DMD/BMD
- MedLine Plus
- ClinicalTrials.gov
- PubMed
- National Library of Medicine
- Respiratory physician list for muscular dystrophy patients
- Distrofia Muscular
- CenterWatch
- LD Online
- Office of Dietary Supplements (ODS)
- Your Child’s IEP
- The Howard Hughes Medical Institute
- Gene Tests
- HospitalWeb
- RxList
- Boston Research and Training Center in Rehabilitation and Childhood Trauma
- TASC Network
- Progressive Medical
- International Ventilator Users Network
- Respiratory Care in Muscular Dystrophy
- Respiratory Care Online
- J.H. Emerson
- Percussion Corp
- American Biosystems
- The CPAP Store
- SleepNet
- Scoliosis Research Society
- Scoliosis World
- Search PubMed
- Neuroscience on the Internet
Emotional
- Book: Moonrise Written by: Penny Wolfson. St. Martin’s Press, March 2003
- DMD Pioneers
- Hope for Muscular Dystrophy Community
- Crooked Rainbows
- Family Village
- The Compassionate Friends
- A Rinty for Kids
- Band-aides and Blackboards
- Halloween Costumes bridgeschool.org and costumesupercenter.com
- Special Families
- theStatus.com
- Innoculate Personal Edition
- Free Translation
MD Community
- National Center on Birth Defects and Developmental Disabilities
- United States
- Muscular Dystrophy Family Foundation (not associated with MDA)
- Disabled Children’s Relief Fund
International Organizations
More:
Lotsa helping hands, great way to coordinate “help” for your family or someone who needs it…also looks like it could be utilized to help organize volunteers for grassroot fundraisers
A bed that some patients with NMD are using available here.