Below is a survey for families with children who have limb loss and/or differences. The survey is to better understand the needs of this community and to improve resources. This is an Institutional Review Board (IRB) approved study at the University of North Carolina, Chapel Hill.
We have compiled a list of resources for families with children with limb loss or orthopedic disability. We hope you find thes helpful.
The Association is not responsible for the content of any material presented or discussed on the referenced site nor does it monitor those sites or ensure that the site addresses are accurate.
If you have a link which may fit above criteria, please submit your link to firstname.lastname@example.org.
Amputee Coalition official website of the Amputee Coalition whose mission is to empower people with limb loss through advocacy, education, and support.
I-CAN Bill Baughn and his wife, Joyce, a bilateral below elbow amputee since age six, established I-CAN (International Child Amputee Network) and an Internet mailing list to provide information and support contacts to children with absent or underdeveloped limbs and their parents.
Stumps R Us Support group using humor to aid fellow amputees.
Adaptive Sports / Camps/ Fitness / Recreation Groups
Adventure Amputee Camp (AAC) The mission of the Adventure Amputee Camp is to encourage children with amputations or limb differences to stretch their potential and imagination, and explore all that is possible.
Adventure Camp Inc. The camp is held each summer for children and adolescents with limb loss.
Amputee Coalition Paddy Rossbach Youth Camp Camp is a 6-day traditional summer camp experience for children ages 10-17 who have limb loss or limb differences. The camp offers fun and exciting activities where campers are challenged to increase independence, test themselves, and build new friendships in a supportive, caring environment.
Camp No Limb-itations The camp gives kids with amputations and limb deficiencies the opportunity to meet other kids and teens like them during a week-long camp experience. Campers participate in traditional camp activities while building long-lasting friendships.
Camp No Limits The vision of Camp No Limits is to be the leading camp for young people with limb loss, and their families, in the United States and abroad and to be recognized for camper satisfaction, amputee education, peer support and age specific physical, recreational and social skill development. Camp sites include California, Maine, Idaho, and Florida.
Camp STAR, Youth Amputee Camp Campers are encouraged to make new friends, to help one another and share their experiences. We provide an environment where our campers feel free and comfortable to participate in sports, games, and various other activities without fear of embarrassment or criticism. We motivate our campers to challenge themselves and try new things.
Wounded Warrior Amputee Softball Team Kids Camp To qualify to attend Kids Camp, children must be between 8 – 12 years old, with an amputation or missing limb, and be physically capable of participating in our daily softball clinics. We give priority to children who otherwise qualify and are from military families.
AmpSurf A non-profit organization whose mission is to Promote, Inspire, Educate, and Rehabilitate people with disabilities, including children, through adaptive surfing and the healing power of the ocean.
USA Waterski Water skiing has been adapted so that physically disabled athletes can participate and compete in all three events traditional to able-bodied competition.
USA Sailing Provides instruction and environment for disabled individuals to experience the thrill of sailing
American Canoeing Association This site has info on canoeing and kayaking including adaptive paddling.
USTA The official tennis site and includes links for adaptive and wheelchair tennis allowing search for programs by zipcode.
US Power Soccer Association The Official Site of the United States Power Soccer Association (USPSA) which governs the sport of Power Soccer in the United States and helps promote the sport on a national and international level.
World Team Sports Cycling World T.E.A.M Sports (The Exceptional Athlete Matters) uses the universal power of sports to create soul-stirring experiences by teaming disabled athletes with able-bodied athletes.
SNOW SKIING/SNOWBOARDING/CROSS COUNTRY
Canadian Association for Disabled Skiing (CADS) This Canadian organization’s main objective is to assist individuals with a disability to lead richer and fuller lives through active participation in recreational and competitive snow skiing and snowboarding.
Professional Ski Instructors of America The purpose of the site is to provide members, press, and consumers with a wide variety of resources related to snowsports and teaching, including adaptive skiing.
Universal Wheelchair Football Association Wheelchair football is an extremely fun and adaptable sport that almost ANYONE can play.
Wilderness Inquiry, adventure travel Offers a wide variety of canoe, sea kayak, dogsled, raft, horse pack and hiking trips throughout North America and the World. And make the outdoors accessible to everyone, including persons with disabilities.
HEALTH AND FITNESS
YMCA YMCAs are at the heart of community life across the country: 42 million families and 72 million households are located within three miles of a YMCA. 448 YMCA’s throughout the country offer fitness classes for people with disabilities.
Produce for Better Health Foundation PBH is a non-profit consumer education foundation whose purpose is to motivate people to eat more fruits and vegetables to improve public health.
Ways to Enhance Children’s Activity & Nutrition We Can! is the U.S. government program designed for families and communities to help children achieve a healthy weight through improved food choices, increased physical activity and reduced screen time.
TRACK AND FIELD
Achilles Track Club Achilles is a worldwide organization, represented in sixty countries. Their mission is to enable people with all types of disabilities to participate in mainstream athletics, to promote personal achievement, enhanced self esteem, and the lowering of barriers between people.
US Ice Hockey national website includes section for disabled, amputee, and special needs hockey information.
Wheelchair & Ambulatory Sports, USA Carrying the Torch for American Wheelchair Athletes. Dedicated to the Guidance and Growth of Wheelchair Sports.
Spokes ‘n Motion (disabled sports equipment) Spokes ‘n Motion works with many companies to help continue offering and creating new opportunities to the disabled community.
Paralyzed Veterans of America Official Website of the Paralyzed Veterans of America
National Sports Center for the Disabled Founded in 1970, the National Sports Center for the Disabled’s mission is to positively impact the lives of people with any physical or mental challenge through quality adaptive recreation programs in over 20 sports.
National Center on Physical Activity and Disability NCPAD is an information center concerned with physical activity and disability. Being physically active is good for every body. That’s a message you will find many times on this site.
Lakeshore Foundation Lakeshore Foundation is a not-for-profit organization that promotes independence for persons with physically disabling conditions and opportunities to pursue active healthy lifestyles.
Dwarf Athletic Association of America DAAA was formed in 1985 to develop, promote and provide quality amateur level athletic opportunities for dwarf athletes in the United States. Their mission is “To encourage people with dwarfism to participate in sports regardless of their level of skills.”
Disabled Sports USA A national nonprofit organization established in 1967 by disabled Vietnam veterans to serve the war injured. DS/USA now offers nationwide sports rehabilitation programs to anyone with a permanent disability.
Amputee Resoures for Canadian Amputees An online resource and directory for amputees in Canada and around the world with Canadian and International links to amputee and disability related web sites to provide quick access to some of the best amputee resources available
Professional Association of Therapeutic Horsemanship International (PATH Intl.) PATH International is a national non-profit organization that changes and enriches lives by promoting excellence in equine assisted activities. PATH Intl is the voice for Equine Assisted Activities and Therapies (EAAT) where individuals with and without special needs experience the rewarding benefits horse interactions.
American Association of Adapted Sports Programs Originating in Georgia, AAASP’s mission is to oversee the partnership of leaders in education and community to lay the foundation for a national network of interscholastic adapted athletic programs.
Canadian Cerebral Palsy Sports Association — The CCPSA is an athlete focused national organization administering and governing sport opportunities targeted to athletes with CP and related disabilities.
STRIDE Adaptive Sports STRIDE is a multidisciplinary, educational organization specializing in therapeutic recreation-related services for individuals with disabilities spanning over many Northeastern states.
INVAFIT21 Club e. V. Europe’s First International Youth Amputee and Dysmelia Patients Sports and Activities Program. This Europe-wide club offers adapted sports to individuals, ages 5 to 25; including swimming, Yoga, fitness, gymnastics, horse riding, and aerobics as well as a competitive athletic program. (Website primary language: German)
Global HELP (Health Education using Low-cost Publications) A humanitarian organization providing free health-care information to developing countries and is committed to making medical knowledge accessible worldwide.
Starlight Children’s Foundation Canada Mandated to improve the equality of life of children with serious illness
Ye Notorious Krewe of the Peg-Leg Pirate The Krewe’s purpose is to help amputees and their families as well as organizations that assist amputees. Members provide services, scholarships and equipment that can enhance the lives of amputees of any age.
You Inspire a nonprofit that features video stories of support and encouragement by survivors/overcomers for those facing difficult times (i.e. recent diagnosis or other life challenge).
Adolescent Health Transition Project The Adolescent Health Transition Project is designed to help smooth the transition from pediatric to adult health care for adolescents with special health care needs. This site is a resource for information, materials, and links to other people with an interest in health transition issues.
CAMO pour personnes handicapees Help develop strategies to integrate individuals with disabilities into the Canadian work force
Going to College This Web site contains information about living college life with a disability. It’s designed for high school students and provides video clips, activities and additional resources that can help you get a head start in planning for college.
Healthy & Ready to Work National Resource Center This website has many tools for youth with special health care needs (YSHCN) with the mission that they receive the services necessary to transition to all aspects of adulthood, including adult health care, employment and independence.
Healthy Transitions This website is a resource for youth with developmental disabilities ages 14-25 years, family caregivers, service coordinators, and health care providers featuring video vignettes that demonstrate health transition skills and interactive tools that foster self determination and collaboration.
O&P Digital Technologies An Internet portal dedicated to providing comprehensive information and services to the orthotics and prosthetics profession. The site is owned and operated by a Florida internet technology company that provides a full range of web/software development and technology services tailored to the O&P profession.
Prosthetics Research Laboratory and Rehabilitation Engineering Research Program at Northwestern University The goal of their research is to improve the quality of life for persons who use prostheses (limb replacements) and orthoses (assistive systems) through creative applications of science and engineering to the P&O field located in RIC
Wheelchair features informative articles about wheelchairs, wheelchair accessories and wheelchair sports. Also included are interviews with disabled athletes and a collection of free wheelchair sports videos.
Active Living Magazine Quarterly. DT Publishing, P.O. Box 2660, Niagra Falls, NY 14302. Phone: (800) 725-7136
Exceptional Parent is a monthly magazine for parents and families of children with disabilities, and the professionals who work with them. The magazine addresses the full spectrum of special needs, including medical and family issues, as well as financial issues and advocacy. Each month’s issue features a special needs article, such as autism spectrum disorders, learning disabilities, managing stress and caregiver burnout.
In Motion – A Publication of the National Limb Loss Information Center (part of the Amputee Coalition of America). 6 Issues per year (bimonthly). Amputee Coalition of America. Phone: 1-888-AMP-KNOW (267-5669).
Palaestra (Greek word for sport school or gymnasium). Quarterly forum of Sports, Physical Education and Recreation for those with Disabilities: Phone: (800) 327-5557
Capabilities provides information about research and education activities at the Northwestern University Prosthetics-Orthotics Center (NUPOC). Clinicians, manufacturers, consumers, and fellow investigators who are involved in prosthetics and orthotics (P&O) will find articles about the research, presentations, publications, and other activities conducted by NUPOC staff and students. Contact: email@example.com
CHAMP: Available through War Amps Child Amputee Program of Canada. Phone: (800) 267-4023
Especially for children with limb deficiencies or amputations
A Friend for Life – A story and activity book for kids with cancer – Draw Me a Picture. By Susan Nessim and Barbara Wyman. 64 pages. © 1994. ISBN: 0-9636333-2-5.
Chester…the imperfect all-star. By Sandra Lee Peckinpah. 40 pages. Dasan Publishing. ©1993. ISBN: 0-9627806-1-8.
Harry and Willy and Carrothead. By Judith Caseley. 24 pages. Greenwillow Publishing. © 1991. ISBN: 0688094929.
Imagine…Amazing me! By Libbi Chilia. 28 pages. Halo Publishing International. © 2008. ISBN-10: 0979742935.
My Brand New Leg. By Sharon Rae North. 40 pages. North Star Entertainment Group. © 2003. ISBN-10: 0974154407.
Oliver’s High Five. By Beverly Swerdlow Brown. 32 pages. Health Press. © 1998. ISBN: 0929173260.
Puppies for Sale. By Dan Clark. 24 pages. Dalmation Press. ©1999. ISBN: 1-57759-262-X.
The Making of My Special Hand, Madison’s Story. By Jamee Riggio Heelan. 32 pages. Peachtree Publishers. © 2000. ISBN: 1-56145-186-X. Phone: (800) 241-0113
Tibby Tried It. By Sharon and Ernie Useman. 44 pages. Magination Press. © 1999. ISBN-10: 1557985588.
Exercise: What It Is, What It Does. By Carola S. Trier. 56 pages. Greenwillow Books. © 1982. ISBN: 0-688-00951-4
A Manual for Below Knee (Trans-tibial) Amputees, 5th Edition. By Alvin L. Muilenburg and A. Benne H. Wilson, Jr. Rehab Press. Phone: (713) 524-3949
Amputee’s Guide – Below the Knee. By Ann Alexander. 19 pages. Adult amputee oriented guide with photos. Medic Publishing Co. ©1975. Phone: (425) 222-0844
Below Amputation: A Guide for Rehabilitation. By Todd Kuiken, Mark Edwards, and Nicole Soltys. 31 pages. Rehab Institute of Chicago. Phone: (312) 238-2859 www.RICbookstore.org.
Children with Limb Loss: A Handbook for Families – several booklets by age and subject. Center for Limb Differences, Mary Free Bed Rehabilitation Hospital. Phone: (616) 840-8224 www.maryfreebed.com.
Exercises for the Lower Extremity Amputee – A program for regaining optimal function. Medic Publishing Co. Phone: (425) 222-0844 ISBN: 0-934230-46-3.
American Physical Therapy Association, brochures
Handbook for Children with Lower Limb Deficiencies and Their Families. © 2005. Shriners Hospitals for Children. Phone: (813) 281-0300
REACH – The Association for Children with Upper Limb Deficiency. Quarterly newsletter “Within Reach”. Phone: (0845) 1306 225
Sports for the Leg Amputee. By Bernice Kegel. 72 pages. Medic Publishing Co. ©1986. ISBN: 0-934230-14-5.
Type with One Hand. By Nina K. Richardson. South-Western Publishing Company. © 1959.
On My Own Two Feet: A Parent’s Guide to Help Your Baby Walk. By Lisa and Michael Callahan. This pdf e-book provides guidance, research, resources, moral support, toys and activities with photos directed at parents raising a child with a walking development delay.
Global HELP (Health Education Low-cost Publications) — An organization providing free health-care information to developing countries and is committed to making medical knowledge accessible worldwide. Topics available for families include Cerebral Palsy, Arthrogryposis, Spina Bifida and treatment of clubfoot in different languages.
Limb Loss Education Day And Awareness Month – Program of the Amputee Coalition of America. Phone: 1-888-AMP-KNOW (267-5669) www.amputee-coalition.org.
Limb Loss Resource Center — Through the following link you will be directed to the ACA page which lists resources. Each topic links to resource lists including books; articles from a variety of sources, video/CD ROMs, and other related websites/organizations. www.amputee-coalition.org
Parent to Parent is a national non-profit organization that provides emotional and informational support to parents of children who have special needs. Parent to Parent programs across the country provide emotional and informational support to families of children who have special needs most notably by matching parents seeking support with an experienced, trained ‘Support Parent’. www.p2pusa.org.
Rehabilitation Institute of Chicago – Life Center, provides an education center for families and professionals. Many resources are available. Phone: (312) 238-LIFE (5433). www.lifecenter.ric.org
Cerebral Palsy – Early Identification https://www.sralab.org/lifecenter/resources/cerebral-palsy-early-interventions
Primarily for exercise/sports – adults and children
Adapted Game Controllers (PDF) — A list of websites for adapted game controllers, including options for those who need to play one-handed. Compiled by Shriners Hospital, Springfield and Tampa.
Five Steps for the Introduction to Lower-Limb Running. By Robert S. Gailey, The O&P Edge, Dec 2003..
Kids’ Stretches. Free catalog from Stretching Inc. Publications. Phone: (719) 481-3928 (800) 333-1307 www.stretching.com.
Online Resources to Help Families Make Healthy Food Choices (PDF) — A list of websites recommended and compiled by the dietician at Tampa Shriner’s Hospitals for Children which provide guidance and educate families on the nutritional value of food.
Physical Fitness: A Guide for Individuals with Lower Limb Loss. By Ernest M. Burgess and Albert Rappoport. Department of Veterans Affairs Rehabilitation Research and Development Service. Dept of VA – Veterans Health Administration, Washington DC. www.va.gov.
Ten Exercises to Maximize the Performance of Your Prosthetic Feet. By Robert S. Gailey, In Motion, Volume 11, Issue 3, May/June 2001.
Teasing: Books for Children, Teasing Happens: How to make friends, Teasing Happens: Tips for Teachers, Teasing Happens: Tips for Parents, Teasing Happens: What to do, Tips for Encouraging Self-Esteem in Teens with Disabilities, Developed by Mary Free Bed Rehabilitation Hospital, Center for Limb Differences. Phone: (616) 840-8224
Tummy Time Tools – A developmentally based program to incorporate positioning, handling, and fun activities into the lives of young infants. By Colleen Coulter, Laura Hylton-Plank, Dulcey Lima and Deanna Fish. Children’s Healthcare of Atlanta. Phone: (404) 785-6890
ACPOC would like to recognize Julie Honeycutt, PT, Barb Kaniewski, OTR, Jamee Riggio Heelan, OTR/L, Colleen Coulter, PT, and Joanne Shida-Tokeshi, OTR/L who originally presented the majority of this material in a workshop at the 2005 ACPOC annual meeting. The goal of this workshop was to generate resources that would be useful for the families of children with limb differences.