With a condition so rare that only one in 3,000 babies born have this neuromuscular disorder it’s easy to comprehend how alienated anyone with arthrogryposis multiplex congenita (AMC) must feel. Through the hard work of one mother’s vision and an army of members, the AMC support group has helped bridge the gap with the power of the internet. It is not only the group’s mission to provide and encourage a greater understanding and awareness of this condition, but also to provide a support system. To help those that have felt all their lives an outcast or alone, meet others who have lived that same life, to meet other families who have the same concerns and to provide a resource of information.
But meeting online is not enough. It’s hard to explain to a mom exactly how another mom has taught her child to sit up without the use of his arms, or how one child learned to stand. What so many people take for granted: the ease of walking, typing, eating and breathing those with AMC have had to struggle to adapt to this world. Our conferences solidify that bridge and strengthen the bond of our AMC family. Once a year we come together, bring professionals, doctors, physical therapists, occupational therapists, provide workshops and invite people throughout the world to learn, share, laugh, cry and grow.