Group items tagged

Social Security launched the Compassionate Allowances program in 2008 with a list of 50 diseases and conditions.  The announcement of 52 new conditions, effective in August, will increase the total number of Compassionate Allowances conditions to 165.  The conditions include certain cancers, adult brain disorders, a number of rare genetic disorders of children, early-onset Alzheimer’s disease, immune system conditions, and other disorders.  In his speech that opened the Congress, Commissioner Astrue thanked the National Institutes of Health for research they conducted which helped identify many of the conditions added to the list.

Fragile X syndrome and fragile X-associated disorders are a group of genetic conditions that can affect individuals and their families in many ways. Find out more about fragile X syndrome and fragile X-associated disorders.

James Beck is getting ready to graduate in May from Montana State University, but recently found he couldn’t turn in the graduation forms himself, because he can’t physically get to the registrar’s office. Beck, 25, a computer science major from Belgrade, has muscular dystrophy, a genetic disorder that weakens muscles, so to get around he has to rely on his power wheelchair. The only way to reach the registrar’s office in historic Montana Hall is to climb lots of stairs. “I can’t get to the place everybody has to go,” Beck said. “I think it’s more ridiculous in this day and age to have small obstacles.”

Disability is part of my family's daily life and it has been since my oldest daughter was born with a chromosomal abnormality over seven years ago. My daughter's genetic disorder resulted in a variety of disabilities, both cognitive and physical, that impact nearly every aspect of our lives. Usually we go along with our routine, but sometimes I am struck by how little others know about disability and what life is like for us. I have been reminded of this recently and wanted to share five things I wish everyone knew about disability.

There’s been someone pretty special on the sidelines at Red Bank Middle School football games this season. It’s not a standout football player, though there are surely a few of those on the team. And no, it’s not the girl who twirls flaming batons at half time, though she certainly wows the fans. No, this year it’s a 12-year-old girl who is creating sideline chatter and warming plenty of hearts in the process. Though Anna Frierson has plenty of school spirit and has always dreamed of being a cheerleader, some might not have expected to see her on the squad. She has Down syndrome, a genetic chromosomal disorder that slows mental and physical development. And though Anna’s short stature and cute face clue most folks to her differences, fellow cheerleaders say Anna’s spirit is all they notice.

A genetic disorder is leaving Jessica Blinkhorn with increasingly limited control over her body, but that’s not stopping her from producing awe-inspiring drawings.

Full brochure and registration information (PDF) Please join us to help support the first annual Billings Buddy Walk.  The Buddy Walk (www.buddywalk.org) was established by the National Down Syndrome Society to help celebrate Down syndrome Awareness Month in October and to promote acceptance and inclusion of people with Down syndrome.   We have teamed up with YESKIDS (www.yeskids-mt.com), a local organization who's mission is to raise awareness and support for families that have loved ones with Down Syndrome and other genetic disorders here in Yellowstone county and Eastern Montana.   The Billings Buddy Walk will be at Dehler Park on Saturday October 2nd. Registration begins at 10AM and the WALK starts at 11AM.  There will be food and fun activities for the kids and adults. Our goal is to walk one mile together to raise awareness and meet others who's lives have been changed by someone "Xtra Special".   The cost to register is $10 per person and includes a Buddy Walk T-shirt. There is no cost for "Xtra Special" individuals to register and they will receive a free T-shirt. Please register by September 5th in order to get your t-shirt ordered. Registrations received after September 5th may not receive a T-shirt.      

Jessica's daughter, Isabelle, has Williams syndrome, a genetic disorder with a number of symptoms. Children with Williams are often physically small and frequently have developmental delays. But also, kids and adults with Williams love people, and they are literally pathologically trusting. They have no social fear. Researchers theorize that this is probably because of a problem in their limbic system, the part of the brain that regulates emotion. There appears to be a disregulation in one of the chemicals (oxytocin) that signals when to trust and when to distrust.