Links & Resources
MEDICAL DIAGNOSIS & TREATMENT
Shriners Hospitals for Children – Northern California
Congenital Hand Anomalies via Johns Hopkins NetOrthoDoc (www.netorthodoc.org)
Congenital Hand Differences, The Hospital for Sick Children in Toronto, Ontario.
Texas Scottish Rite Hospital for Children
American Society for Surgery of the Hand
Via Childern’s Hospital Boston.
Cleveland Clinic – Congenital Hand Differences
Shriners Hospitals for Children – Northern California is a regional pediatric medical center providing highly specialized care and rehabilitation to children with congenital conditions and complex medical needs regardless of a family’s ability to pay.
Through the Shriners Hospital for Children, Dr. Scott H. Kozin and Dr. Dan A. Zlotolow are committed to providing state of the art free care to children from around the world, because all children deserve the best we can give them.
Shriner’s Hospital for Children (12 locations)
CONNECTIONS & SUPPORT
International Child Amputee Network (I-CAN), a tax exempt, 501(c)(3) organization, is dedicated to promoting education, support, information, and empowerment to traumatic and congenital limb different children and their families. I-CAN is committed in bringing together these children and their families to enhance the quality of life for the children and young adults based on the concept of mentors helping families, parent helping parents, and kids helping kids.
DysNet is the global network connecting anyone who is personally or professionally affected by congenital limb deficiency. The site is inclusive, communicative and collaborative. This is the place where you can find information, contribute your own thoughts and ideas and join the conversation.
C.H.I.L.D is a nationally recognized charitable organization for parents or care providers of a child with limb differences. Our main purpose is to provide support to parents in the form of a networking system that matches them with other parents whose children have the same or similar condition.
‘REACH’ aims to provide the affected families 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.
Helping Hands Foundation- The philosophy of the Helping Hands Foundation is to provide support and information. A special bond often develops between parents, affected children and their siblings when families get together to share ideas and experiences. Family outings are planned for all to enjoy. These social events offer an informal atmosphere for parents to meet each other and for children to interact with one another. In addition, relevant topics and issues are addressed through newsletters and speakers.
Disability Is Ability is a program performing talks to people of all ages in schools, businesses and clubs, providing inspiration along the way.
Find Lucky Fin Project on The Mighty http://themighty.com/partner/luckyfinproject/
The AUSSIE HANDS Foundation Inc offers. support for children and adults with hand differences; provide opportunities for networking and exchange of information.
Limbkids Support Association Inc is a non-profit, voluntary organisation based in Queensland; Australia is comprised of parents, professionals and interested people concerned with the care of children who have congenital or acquired limb differences.
Pikes Peak Amputee Connection is dedicated to connecting with individuals and their families when facing limb challenges and differences.
Colorado UnLimbited Children is a part of Colorado UnLimbited Connection, a Colorado Nonprofit Corporation, founded by and for the families of children with limb differences – whether from birth, medical condition or unfortunate accident. We provide a community where families of children with limb differences gather to offer support and share information in order to better meet the emotional and social needs of both our children and our families.
Little Fins: Discussion and support group for parents of children with upper limb differences. Originating from the Little Fins group in Minnesota, but open to anyone.
Sammy’s Friends is a support group created for the support of those affected by congenital limb differences.
The mission of the Nebraska Children with Upper Limb Deficiencies (NCULD) organization is to bring Nebraska families with children who have upper limb differences together for mutual support and life-long friendships and to educate both the parents and children throughout life’s different stages.
So What is a campaign to raise awareness for amputees and limb-different individuals on behalf of the Amputee Coalition of America. The idea is that even though we may have a physical difference, we have just as much to offer as anyone else.
Little Hand Big Heart
Making people aware of Amniotic band Syndrome one Little Hand at a Time.
Profiles of children with a variety of upper limb disabilities. You can email the children’s parents directly.
Message Board with an orthopedic surgeon who specializes in congenital and pediatric upper extremity problems. You have to be a member to post on the message board, but you can read the entries without joining.
Unlimbited Possibilities is a community where families of children with upper limb differences can gather to offer support and share information.
One the Other Hand I Have a Thumb was created by a registered and licensed occupational therapist (OTR/L), and a certified weight trainer who also has a congenital hand anomaly.This website provides information, support, and suggestions for parents, relatives, and friends of children with hand anomalies.
Leggings for a Reason
Custom designed leggings created for fundraising and community awareness, organizations, and inspiration.
PROSTHETICS & ADAPTATIONS
Hanger Orthopedic Group, Inc. is the world’s premier provider of orthotic and prosthetic (O&P) services and products, offering the most advanced technology, clinically differentiated programs and unsurpassed customer service. Owning and operating hundreds of patient care centers nationwide, Hanger’s business also includes distribution centers and the largest O&P network management company in the country.
Advanced Arm Dynamics (AAD) specializes in providing the most technologically advanced upper limb prosthetic rehabilitation in the world
Touch Bionics is a provider of world-leading prosthetic technologies and supporting services designed to ensure the best possible outcomes for people with upper limb deficiencies.
Another Way To Play – Instrumental Adaptations for Musicians with Limb Differences
One Hand Typing and Keyboarding
E-Nable is A network of passionate volunteers using 3D printing to give the World a “Helping Hand.”
Recorders For All: Triple Play Adaption
CAMPS & ATHLETICS
Hands To Love is a Florida 501(c)(3) congenital hand anomaly organization dedicated to bringing families together to create a safe haven in which kids with congenital hand differences can share experiences and develop a support network.
Camp No Limits is a non-profit organization 501 (c)(3) providing camps for children with limb loss, and education, mentorship, and support to these children and their families.
Challenged Athletes Foundation
Charity providing grants to athletes with a physical disability. History, news, grantees, newsletter and how to apply for funds.
I Am Adaptive
Non-Profit Organization by ADAPTIVE Athletes striving to build a Strong Global Community and Raise Awareness for the ADAPTIVE Movement.
Adaptive Music Project Making Excellence in Music Accessible for All
Sportable is a non-profit in Richmond, VA dedicated to providing adaptive sport and recreation opportunities, events, & competitions…help us break down barriers one sport at a time!!
Helping Hands (Symbrachydactly)
Hands Down Support Group – Texas is a parent-run organization providing support to families of children with hand differences. The group originated at Texas Scottish Rite Hospital and is made up primarily of families whose children are patients of Scottish Rite.
Amniotic Band Syndrome community page on Facebook.
Jim Abbott is Motivational Speaker and Professional Baseball Player
Tony Memmel is a songwriter and performer with unique charisma and creativity. He was born missing his left forearm and taught himself to play the guitar, piano and harmonica.
From Life Without Limbs to Life Without Limits! Nick Vujicic was born without arms or legs but the love he holds overcomes any physical limitation.
David Harrell is an actor, writer, dancer, speaker and disability advocate.
Pretty Different A different voice in this world of (im)perfection.
Shared Experiences – The experience of having and parenting children with upper limb deficiencies Having been born with a missing left hand, Charlotte has a natural understanding of the issues, and has been able to bring together the many and varied responses in a way which offers valuable insights into parenting visibly different children.
Can’t is not an Excuse is a brand and organization dedicated to helping people overcome any obstacles that they face in life. The word “can’t” should not be used lightly because with hard work we can accomplish anything we put our minds to.
Don’t Hide It, Flaunt It- Meg Zucker Celebrates a Wolrd of Differences
I am a wife, mother to three children, lawyer, and woman who happened to be born with ectrodactyly, a genetic condition where I only have one finger on each hand and one toe on each foot. Despite my quite different appearance, I feel and experience life as able-bodied as everyone else.
One Little Fin is a mother’s blog. “From the moment he was born, Gavin has proven that there is nothing he can’t do. He inspires me every day with his big, gorgeous smile and his determination.”
My Special Hand
Sam is the star here. He’s 6 years old and he was born with only 5 fingers (all of them on his left hand). We call his right hand his special hand. Sam wanted to make videos showing everything that he can do with his “special hand”.
Relaxed Mama Motherhood in Comfy Pants and Flip-Flops: Honest ramblings from a new mom who happens to have a baby with only one hand.
Different, not so much! Is a blog written by a young woman with an upper limb difference who hopes to help kids and parents cope with limb differences
My Beautiful Isabelli ~ Facing and conquering the unexpected. A mother’s blog.
Born Just Right- This blog is about Jordan – she was born on December 29, 2005 and has surprised us in so many ways. Most obviously she surprised us when we discovered she’s missing her left arm at the elbow. I decided to start blogging about Jordan from the moment I found out I was pregnant… so blogging wasn’t a difficult process for me. But through the time I have felt committed to making sure Jordan gets everything out of life. We feel blessed to be the parents of a very special little girl… She was truly born just right.