Arthrogryposis Mini-Meet Up

Arthrogyposis Multiplex Congentia

Smokin J’s Barbeque had the pleasure of cooking up a couple of pork butts for our Arthrogryposis family.  This “Mini-Meet Up” usually occurs twice a year, once in the summer and once in the fall, for those affected by Arthrogryposis Multiplex Congenita.   Attendees use this gathering to keep in touch with each other, let the kids play together and discuss topics surrounding this underfunded birth defect.

Arthrogyposis Multiplex Congentia Arthrogyposis Multiplex Congentia Arthrogyposis Multiplex Congentia

 

 

 

 

 

 

Arthrogyposis Multiplex Congentia

 

 

Most of the discussion surrounds the annual AMC conference, this year to be held just outside Las Vegas, Nevada.  AMC members, from around the world will gather at this yearly event to attend workshops, discussions and let the AMC kids enjoy the friendships they have formed with their AMC friends.

The conference is 100% funded by donations to http://www.amcsupport.org/

What is Arthrogryposis Multiplex Congenita?

AMC is usually diagnosed during pregnancy.  It is a condition in which a joint is permanently fixed in a bent (flexed) or straightened (extended) position, completely or partially restricting the movement of the affected joint.  If this type of congenital contractures occurs only in one body area, it is not referred to as arthrogryposis but rather an isolated congenital contracture, the most common being “clubfoot.”  However, when arthrogryposis affects two or more different areas of the body, it may be referred to as arthrogryposis multiplex congenita (AMC).

The joints of the shoulders, elbows, knees, wrists, ankles, fingers, toes, and/or hips are also commonly affected.  The condition will not worsen over time, however, it is necessary to seek treatment to prevent further impediments of the joints.

Although statistics show this disorder affects 1 in every 3,000 births, research cannot determine an exact cause. AMC is thought to be related to decreased movement in utero, which can have multiple causes. In many cases of AMC, the exact underlying cause of the contractures cannot be identified.

AMC Mini-Meet up

Arthrogyposis Multiplex CongentiaAlthough a very hot summer afternoon, the AMC kids were eager to visit the playground.  The Greenville Rec Center in Taylors has a handicap accessible playground, complete with a wheelchair ramp, small slide and platform large enough for adults to accompany their child.  The first all inclusive “Boundless Playground” in all of South Carolina! The playground is specially designed to provide play opportunities for children with disabilities.

A big thank you to Jessi Spring for arranging this Mini-Meet Up, whose wonderful daughter Sadie has Arthrogyposis.  Very special thanks to Ani Samargian, founder of AMCSUPPORT.ORG and Board of Directors member, whose daughter, Abby was born with Arthrogyposis.  Both these women strive to uphold the vision of AMCSUPPORT.ORG, of which Ms. Samargian founded, to provide information and support to families around the world, who before Abby’s birth had very little resources about AMC.

AMCSUPPORT.ORG

The whole reason Smokin J’s Barbeque is proud to be a part of this wonderful organization is the brightest light in our lives, Abigail.  Our granddaughter was born with Arthrogyposis and is the most warm-hearted, determined little girl.

Arthrogyposis Multiplex CogentiaCompared to many birth defect organizations, Arthrogyposis gets very little attention, therefore, very little financial support.

If you are a shopper to Amazon.com, you can help Arthrogyposis Multiplex Congentia with each purchase you make. Instead of your normal login to Amazon (amazon.com); go to https://smile.amazon.com/

You will use your normal email and password but will be prompted to choose a registered charity, of which Amazon will make a donation, based upon your purchase.  Please choose:

Arthrogryposis Multiplex Congenita Support

Or you can donate at http://www.amcsupport.org/

Your support will help provide educational materials to soon-to-be-parents regarding the diagnosis of arthrogryposis multiplex congenita and help provide resources for parents to find therapists, doctors and treatments for AMC.  Most fundraising dollars go towards the annual conference which brings together children and adults living with AMC, to educate them on new research, tools and sharing experiences with fellow AMCers.

 

 

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