Resources

Information on Upper Limb Differences
Organizations
International
Summer Camps
Family Weekends
Facebook Groups
Sports Camps
Podcasts and YouTube Videos
Adaptive Aides
Books and Articles
Clothing
Cooking
Prosthetics
Toys
Exercise
Occupational Therapy
Typing

Information on Upper Limb Differences

Multiple hospitals across the United States have limb difference clinics, and eight centers are part of the Congenital Upper Limb Differences (CoULD) Registry that tracks patient outcomes over time. The registry’s purpose is to better understand upper extremity function and emotional well-being of children with upper limb differences, and to date, physicians have published multiple research studies on registry patients.

Here are the hospitals that are members of the CoULD registry. Note that while some have adopted the preferred terminology of many members of the limb difference community, others refer to limb differences as “deficiencies” and “deformities.”

Boston Children’s Hospital
Children’s Hospital of Philadelphia, Philadelphia, PA
Gillette Children’s Specialty Healthcare, St. Paul, MN
Nationwide Children’s Hospital, Columbus, OH
Seattle Children’s Hospital, Seattle, WA
Shriners Hospital for Children, Sacramento, CA
University of Utah Hospital & Shriner’s Hospital for Children, Salt Lake City, UT
Washington University & Shriner’s Hospital for Children, St. Louis, MO

Organizations

The Amputee Coalition of America (ACA) is a national, non-profit amputee consumer educational organization representing people who have experienced upper and/or lower amputation or are born with limb differences. The web site features a wealth of information and links, including the Youth Engagement Program (YEP) and Youth Camp, Certified Peer Visitor (CPV) Program, the Amputee Coalition Support App, regular amputee support group meetings, and an Annual Educational Expo & Conference. On Facebook here and on Instagram here.

Beautifully Made Community for individuals or loved ones touched by limb differences or limb loss is a support group focusing on hospital networks, providing resources for new families with limb differences, and connections with community, and events in the Boston area. On Facebook here and on Instagram here.

Helping Hands Foundation, Inc. is a Massachusetts-based support group which hosts annual events. Typically hosts a Winter Event weekend in January or February in Massachusetts. On Facebook here.

Limb Difference Foundation is a pending 501c(3) non-profit created by individuals with limb differences to support individuals and families with limb differences. The organization focuses on creating connections sharing tools and support with and for others who have limb differences. On Facebook here and on Instagram here.

Limb Kind Foundation improves the lives of children with limb loss both domestically and internationally, by strengthening the amputee community and providing pediatric prosthetic care. Runs a yearly Adaptive Runway Event in New York for individuals with limb differences. On Facebook here and on Instagram here.

Lucky Fin Project is a national organization that provides support, education, and connections for families of children with upper limb differences and multiple limb differences. Hosts a yearly weekend in Troy, Michigan in July. Very active on Facebook here and Instagram here.

The Center for Limb Differences at Mary Free Bed Rehabilitation Hospital in Grand Rapids, Michigan, specializes in caring for young patients with congenital and acquired hand, foot and limb differences. Established in 1946, the center was the nation’s first pediatric amputee clinic. The Center for Limb Differences offer prenatal consultations and provides care, offers support, and recommends resources to benefit children from birth through age 18.

Moxie Adaptive is an organization focused on creating spaces to connect and empower those with limb differences. Their mission is: “Creating a space to connect and empower those with limb differences by fostering life-long connections and friendships through shared experiences that boost self-love and conquer personal fears.” On Facebook here and on Instagram here.

International

Aussie Hands, based in Australia, supports children and adults with a hand difference, both congenital or acquired, provides opportunities for networking and exchange of information, and researches initiatives focussing on hand differences. On Facebook here and on Instagram here.

International Child Amputee Network (I-CAN) is dedicated to promoting education, support, information, and empowerment to traumatic and congenital limb different children and their families. I-CAN works to enhance the quality of life for children and young adults based on the concept of mentors helping families, parent helping parents, and kids helping kids. On Facebook here.

LimbBo Foundation is a UK based organization that supports children with limb differences and their families. Limbo hosts chats, links families, and provides the opportunity for children to meet other limb different children. On Facebook here and on Instagram here.

LimbPower – “living life without limbs” supports amputees, individuals with limb difference and their families to bridge the gap between hospital rehabilitation and community and school engagement to rebuild lives and improve physical, social and mental well-being. As part of Sport England, LP engages amputees and individuals with limb impairments in physical activity, sport, and the arts to improve quality of life and to aid lifelong rehabilitation. On Facebook here and on Instagram here.

REACH – “helping children with upper limb difference live life without limit” aims to provide families affected by limb difference with the opportunity to get together, share experiences and information about what to do (or not to do) and where to go for advice regarding treatment, and to help them realize that they are not alone. Based in the UK, Reach touches families’ lives from all over the world. On Facebook here and on Instagram here.

Summer Camps

Amputee Coalition Youth Camp is an annual four day long camp in Florida for children ages 10-17 with a limb difference.

Camp Candou is a fun-filled six day sleepover camp experience for children ages 7 to 16 with limb differences and their siblings at Jacob’s Island, Ontario, Canada. The camp is part of Camp Maple Leaf, which has run programs for 65 years.

Camp No Limits – No Limits Foundation is a non-profit organization that provides camps for children with limb loss and differences. The camp aims to provide education, mentorship, and support to these children and their families. Camp No Limits fosters a welcoming and supportive community in the hopes of helping all those who attend the camp. On Facebook here and on Instagram here.

Camp Open Arms is a day camp hosted by the University of Maryland Children’s Hospital for children ages 4 to 16 with limb differences and a family day at the end. The camp includes activities such as hiking, water balloon fights, arts and crafts, and visits from local musicians, entertainers, and zoo animals. Camp Open Arms offers a place of acceptance and happiness for children and also for parents and loved ones, who build camaraderie and hope together. On Facebook here and on Instagram here.

Camp Winning Hands is a free overnight camp for children with congenital hand and upper limb differences in Northern California. Campers between the ages of 7 and 17 get the opportunity to have fun and challenge themselves in a safe, supportive environment. Teen Camp is for kids 12 to 17 years old. The Taylor Family Foundation hosts the camp, set in the hills above Livermore, Calif.

Never Say Never Foundation annually hosts Pirate Camp and Amp Camp in Florida. Pirate Camp is a four day long camp for amputees and challenged youth that teaches sailing skills, ocean appreciation, and the importance of overcoming adversity & following dreams. During the five days of Amp Camp, kids fish, hike, swim, and learn about the local wildlife. On Facebook here.

Family Weekends

Hands to Love hosts an annual Hand Camp in March where families from all across the country gather at Camp Crystal Lake in Starke, FL for a weekend of adventure, camaraderie and relaxation. Hand Camp provides children a safe haven in which to try new activities, meet others who have similar upper limb differences, and just have fun being kids. Hand Camp also allows parents to network with each other, share ideas and experiences, ask questions, be pampered, and relax. On Facebook here and on Instagram here.

Helping Hands Foundation, Inc. typically hosts a Winter Event weekend in January or February in Massachusetts.

Lucky Fin Project hosts a yearly summer weekend for children with upper limb differences and multiple limb differences and their families in Troy, Michigan in July. Dates and information to sign up usually are posted on Facebook here and Instagram here.

Facebook Groups

Helping Hands (Symbrachydactyly) was started by a mother with a baby that has Symbrachydactyly.

Lucky Fin Project (see above) and there is an LFP chapter for each state, e.g. LFP Michigan Chapter

Sports Camps

Camp No Limits is a non-profit organization 501 (c)(3) providing camps for children with limb loss and differences. The camp aims to provide education, mentorship, and support to these children and their families. Camp No Limits fosters a welcoming and supportive community in the hopes of helping all those who attend the camp. On Facebook here and on Instagram here.

Nubability Athletics hosts a variety of nationwide sport camps for youth athletes who are congenital, traumatic or medical amputees from around the world. On Facebook here and on Instagram here.

Podcasts and YouTube Videos @

A Little Limb Different Podcast was created by Kelsey Ryan (@kelseyy.ryan) and Savannah Stuard (@theonearmsavvy), both of whom were born with upper limb differences. Over 9 episdes, they cover all the hard topics for limb different girls living in a two handed world. On Facebook here and on Instagram here.

Disarming Disability was started in 2019 by Nicole Kelly and Dr. Sarah Tuberty. During the two seasons that the podcast has aired, Nicole and Sarah interview experts on disability and discuss a range of topics. Check out their reading list! On Instagram here and Apple podcasts here.

Hands in Motion, the podcast of the American Society of Hand Therapists, interviewed Dr. Sarah Tuberty about her lived experience growing up with a congenital upper limb difference. She shares how language and terminology around limb differences has evolved and how therapists and providers can create networks of support for patients and families as they navigate the limb difference journey.

Parenting Children with Limb Differences Podcast (PCWLD) is a supportive platform where hosts Ali and Kari offer experiences, tips, resources, compassion, empathy, humor, understanding, and validation. I was honored to be a guest on two episodes, 9/16/24 and 9/19/24! On Facebook here and on Instagram here.

Stump Kitchen was created by Alexis Hillyard. Stump Kitchen showcases the interesting and ‘Stumptastic’ ways Alexis uses their body when they cook. On Facebook here and on Instagram here.

We’re Not Stumped Podcast, is the brainchild of Mike Bolland, who was born without a right hand. Over 5 seasons (and still going!), Mike has interviewed dozens of individuals with upper and lower limb differences and limb loss, as well as family members of amputees and prosthetic/support providers. On Facebook here.

Adaptive Aides

Please note that other than for EazyHold, I do not receive any commissions or kick backs for the product recommendations below, but I have received some of these products at no cost to evaluate.

EazyHold Universal Cuff is an adaptable, hygienic, and multi-purpose adaptive product that enables individuals with upper limb differences of all ages to grasp items with their affected sides. On Facebook here and on Instagram here. Please note that as an “affiliate” for EazyHold, I receive a small commission for sales made through this referral.

Form5 creates adaptive devices for the limb difference community created by members of the limb difference community, such as the Bike Arm Adapter (patent pending). Interdisciplinary teams of specialists regularly host fabrication workshops to create innovative medical and recreational devices. Form5 also cultivates a community of individuals with limb differences through its Nub Club. On Facebook here and on Instagram here.

RangeMaster’s StretchStrap is a great tool for children and adults with limited grasp ability who want to be able to enhance their range of motion when stretching because the dual sided strap includes non-stretch webbing on one side and elastic stretchable loops on the other.

StayPutMat is a non-slip drawing mat & writing aid that can be used with any letter-size paper. The StayPut Mat™ may be very helpful for children with upper limb differences who benefit from assistance in stabilizing their paper. The magnetic frame secures the paper while the non-slip frame backing eliminates movement on the table surface. The mat is portable, durable, and easy to use. Educators are eligible for a free StayPut Mat with any order.

Books and Articles

The Hand Book: An Informational Guide for Parents of Children with Hand Differences, by Nina Lightdale-Miric, MD and Sarah Tuberty, OTD, OTR/L, follows readers through their personal journey of understanding the science of hand differences. It offers support to cope with the news of a child’s hand difference at birth, make medical decisions, enroll children in school, prepare children for living independently as an adult, and everything in between.

In Singlehandedly: Learning to Unhide and Embrace Connection, inspirational speaker, author, executive coach, and consultant Ruth Rathblott, tells her story of the exhausting and often lonely years she spent overachieving and trying to hide her disability before she learned to unhide. Ruth’s journey of self-discovery and process of finding self-acceptance is riveting. Ultimately, she discovers the gift of her difference and builds greater connections with people with and without disabilities.

“Born Different, Treated Differently: Changing the Narrative Around Disability Awareness
Tips to put an end to bullying” was written by Madelyn Hubbs, born without her left arm and a Shriners Hospitals ambassador, public speaker, and future OT!

Clothing

Please note that I do not receive any commissions or kick backs for the product recommendations below.

Brooklynn’s Bows is a collection of cute and stylish hair bows created by Krystal Pelletier, mother of Brooklynn Jean, who was born with an upper limb difference. In addition to receiving the bows, purchasers will contribute towards a future prosthesis for Brooklynn. On Facebook here and on Instagram here.

Em13race is an adaptive clothing company that makes products spefically designed for people with upper and lower extremity limb differences. Founded by Alexia Michitti used her personal experiences to create the products, which are offered in sizes youth through adult XXXL. On Facebook here and on Instagram here.

Knit for Unique Fit matches knitters with families to provide custom made knit gloves for children with hand and arm differences. Families share the dimensions of their children’s hands and volunteers create the mittens! The online group was created and is administered by Rena Rosen, founder of Art of Compassion. On Facebook here and on Instagram here.

MimiTENS is a Canadian based company that offers special mittens for children with limb differences. The mittens stay on with no strings attached and they feature long, stretchy cuffs that reach the elbow. If you order a pair of mimiTENS for a child with a limb difference, they will add a special flat mitten for free. On Facebook here and on Instagram here.

10 Seconds ® Proline MultiSport Stretch Laces are my favorite elastic laces set because I find the toggle easy to use and they come in a variety of colors.

Cooking

Very Smart Ideas, created by limb difference advocate, digital creator, and actor Gigi Verrey, offers yummy recipes as well as home and garden tips and products for accomplising every day tasks with one hand. On Facebook here and on Instagram h ere.

Stump Kitchen is a playful and whimsical creation of limb different blogger and educator Alexis Hillyard. Using playful, intricate cosplay characters, Alexis cooks tasty gluten free vegan recipes using her stump as a kitchen tool. On YouTube here, on Facebook here, and on Instagram h ere.

Prosthetics

Please note that I do not receive any commissions or kick backs for the product recommendations below.

Different Heroes is dedicated to celebrating limb differences and those making a difference in the life of someone different. DH raises funds to send children to with limb differences camps, promotes international adoption of children with limb differences, and has distributed hundreds of 3D-printed prosthetics to children around the world. On Facebook here and on Instagram here.

The Helping Hand Project creates 3D printed specially designed, cost-free recreational prosthetic devices. They also strive to foster a sense of belonging by organizing community events that unite children with limb differences, reassuring them that they are never alone. HHP is made up of several chapters located at universities throughout North Carolina. You can complete a device inquiry form and attach pictures of your child’s limb difference. On Facebook here and on Instagram here.

Koalaa prosthetics offers products for all ages that support partial hand and below elbow limb differences. They offer a wide range of interchangeable tools which attach to prosthetic sleeves for various activities such as yoga, surfing, cycling, or playing guitar. Koalaa has a strong community and provides a peer-to-peer service that supports users and their families throughout their limb difference journey. On Facebook here and on Instagram here.

Toys

Please note that I do not receive any commissions or kick backs for the product recommendations below. Occasionally companies send me free products to try.

A note on the toys featured below: their prices range from low cost to quite pricey; there are boy and girl versions for some, but not all; some are customizable for the limb difference or there are multiple options (e.g. upper vs. lower limb) while others are available with one specific limb difference.

Action Figures

Lego® created a figurine with an upper limb difference named Autumn: “Curious and adventurous, Autumn cares deeply about the planet and loves sharing her experiences with her friends. She was born without the lower part of her left arm – not that she lets this get in her way of exploring nature.” Follow Lego on Instagram here.

Plush dolls and stuffies

A Button and a Stitch makes several Special Needs Rag Dolls with Limb Length Differences. Every doll is available in either male or female form and their limb difference is completely customizable. On Instagram here.
A Doll Like Me that uses donations from their global community to ensure that dolls can be provided to families at no charge. The dolls are custom made to match a child’s physical difference, whether that is a facial, limb, or other kind of physical difference. On Facebook here and on Instagram here.
Budsies makes custom plush handmade dolls with hypoallergenic stuffing that promote inclusivity, build confidence and a positive self-image, and celebrate children’s uniqueness! Families can upload a child’s photo or drawing. On Facebook here and on Instagram here.
Crochet-ABLEs are crocheted dolls that can can be customized for specific limb differences. They have partnered with the Lucky Fin Project to offer discounted dolls. Families interested in one should message on Instagram.
Kikilishop makes a plush Amputee Doll that can be personalized for boys and girls. The doll’s legs, arms, feet, and hands all are customizable, and personalization with the child’s name is optional. On Facebook here and on Instagram here.
Mayana & Friends are whimsical plush limb different animals, proudly made by a Filipino-Canadian family raising a child with a congenital upper limb difference. The brand’s mission is to celebrate and normalize differences. There are five options, some with upper and some with lower limb differences. On Facebook h ere and on Instagram here.
Vermont Teddy Bear Company makes Limb Loss & Limb Difference Bears (from home page, click “Bears That Care” tab)! The bear can be customized to have a limb difference (upper, lower, or both). Additionally 20% of the proceeds go to the Amputee Coalition.

18″ realistic dolls with limb differences:

A Step Ahead Prosthetics customizes American Girl® dolls for children with limb loss. These dolls are especially good for children who have an arm or leg stump and/or wear prosthetics (the company does not customize for hand differences). The company modifies American Girl® dolls sent to them by families and will add a custom-designed prosthetic limb (or limbs) to match the child if preferred. Follow on Instagram here.
Target’s Our Generation dolls feature Suzee and Kacy, both of whom have a prosthetic right leg.
Walmart’s My Life As Dolls feature a gymnast who also has a prosthetic right leg.
The Doll for All are realistic 18″ action dolls that are customizable for limb differences. Check out Evie, who has a lower limb difference and Max who has an upper limb difference. On Facebook h ere and on Instagram here.

Exercise

http://www.yogakids.com/
http://www.childrensyoga.com/

Occupational Therapy

Occupational theapy for upper limb difference
American Occupational Therapy Association (AOTA)
Hand Therapy Certification Commission (HTCC)
American Society of Hand Therapists (ASHT)
The Association of Children’s Prosthetic-Orthotic Clinics (ACPOC)

Typing

Typing/Keyboarding for Kids, Teens, and Adults with Hand/Arm Differences – download the free handout!
Dvorak keyboard layout info
Microsoft Keyboard Layout Creator
Microsoft Accessible Accessories are adaptive input devices compatible with Windows 10 and 11 designed to enable children and adults with upper limb differences to assign common keystroke combinations to buttons.
aboutonehandtyping.com
Cornell University Ergonomics Website
Oregon Occupational Safety and Health

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