DysNet Digest: Innovation, shared stories and a man on a mission
Some really interesting articles this week, including ground breaking prosthetics and personal experiences from parents with limb differences, a man on a mission to highlight Poland Syndrome and a video from Sabine Becker, a thalidomide survivor who has spent the past few months battling back to health after suffering a stroke.
Next week, DysNet's parent, EDRIC is holding it's very first meeting for members from all over the UK and Europe to get together, swap experiences and expertise and strengthen our bonds. There'll be more about this next week, as we gather in Malmo, Sweden. Have a great weekend.
- The Tales of an Amputee Mommy: Leg Talk Twice a day I am inundated with questions about my prosthetic. Each morning and again in the afternoon, Robby's classmates surround and pepper me with observations and questions.
- CDC: Interesting information on CDC website about Upper and Lower Limb Reduction Upper and lower limb reduction defects occur when a part of or the entire arm (upper limb) or leg (lower limb) of a fetus fails to form completely during pregnancy. The defect is referred to as a "limb reduction" because a limb is reduced from its normal size or is missing.
- NBC Chicago: Joliet Amputee Gets State's First Bionic Ankle A Joliet amputee on Thursday became the first in Illinois to get a natural-feeling spring in his step thanks to a revolutionary robotic ankle.
- DysNet: Poland Syndrome Documentary and Me, by Woody Bavota A really interesting documentary project investigating Poland Syndrome is being made by a man who only discovered his real diagnosis at the age of 51. Film-maker, Woody Bavota had forged a successful career in the movie and music industries, but had never known the name of his differences until a chance meeting with a man at an airport who had the same syndrome. Now he's concentrating on spreading awareness and knowledge about PS, which is characterised by a missing pectoral muscle and often, missing fingers, through his forthcoming documentary which will se him travel the world in search of answers.
- DysNet: Artist, speaker and Thalidomide survivor Sabine Becker - my road to recovery from stroke US-based artist and motivational speaker, Sabine Becker, who was born with shortened arms as a result of the drug thalidomide, has for the past few months, been fighting back to full strength after suffering a devastating stroke on May 17th 2012.
- RareConnect: New video on DysNet, limb difference Community from Meg Zucker of Don't Hide It, Flaunt It. 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.
- KPLC 7 News: Amputee approved for double arm transplant Surgeons at a Boston hospital now have the green light to perform a ground-breaking surgery. Brigham and Women's Hospital is planning the nation's first double-arm transplant - with both arms above the elbow.
- The Oxford Times: Amputee footballer in line for World Cup slot The man who set up Oxford's amputee football team has now set his sights on World Cup glory. James Catchpole spoke after returning from a triumphant trip abroad with the Great Britain Amputee Football Team.
- Harry Evans on Grünenthal: Incubated in ignorance, fueled by haste, propelled by reckless greed, concealed by deceit. A lie wrapped in an apology is still a lie. It is a big lie, a particularly offensive lie, coming as it does from the German company Chemie Grünenthal responsible for inflicting its notorious drug thalidomide on hundreds of thousands of women in 52 countries.
- Office of Rare Disease Research - How many people have Poland syndrome? I have Poland syndrome. I have a support group here in the U.S. and I also belong to one in the UK. Are there any numbers to report on just how many people in the U.S. have Poland syndrome?
Randy Earl lost portions of his right arm and leg years ago after a jolt of electricity tore through his body while he working as a lineman with Commonwealth Edison.
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