Autism Research Setback: Brain Tissue Shortage Complicated by Freezer Thaw Out

Courtesy of McLean Hospital
Courtesy of McLean Hospital

Autism research received a recent setback. Last year in May 2012, a freezer failure at the Harvard Brain Tissue Resource Center, McLean Hospital, caused 147 frozen specimens to thaw over a period of a few days, with 54 of them dedicated to autism research. Brain tissue is extremely fragile and degrades quickly. This will have an impact on autism research because the tissue cannot be used as intended, which was to study proteins produced by genes and other molecules.

The defrosted tissue can still be used for genetic research but it is unclear what current experiments can yield. Of the 54 autistic brains, 32 of them had been divided, with half put into the freezers and the other half preserved in formalin. The samples preserved; however, yield different information than the frozen samples.

Only a small number brains are donated to science every year as evident by the low amount of brain tissue at the Harvard-affiliated McLean Hospital. This particular bank has been accepting donations of people with autism for about 20 years. Researchers are trying to identify how autism is affecting the brain in earlier stages of childhood; therefore, the greatest demand is for tissue from children.

In a study published in 2011 by the Journal of the American Medical Association, it has been discovered that brains of autistic children grow at an accelerated rate during the first year of life compared to brains of typical children. The autistic brain samples had an abnormally large number of brain cells, 67% more brain cells in the frontal region than the controls. Another study, published by PLOS Genetics, found that autistic children had abnormalities in genes that controlled the number of brain cells. It is with research like this that may lead to treatment that is able to correct an abnormal growth pattern.

Courtesy of Google Images
Courtesy of Google Images

Autism Speaks is an advocacy and research organization which runs the Autism Tissue Program (ATP). This program is partially responsible for collection at McLean Hospital where the freezers failed. The program only supports tissue donation within the US, Canada, and the UK.

If you would like to consider becoming a registered brain donor or want more information, visit the Autism Tissue Program site. When you register with the program, they will provide you with a wallet card that indicates your wishes to be a brain tissue donor and it provides important contact information at the time of need. The Brain and Tissue Bank at University of Maryland also has a website for families interested in donation. Also visit the Harvard Brain Tissue Resource Center which serves as the tissue repository for the Autism Tissue Program.

Paraplegics Can Learn to Walk Again with ReWalk

Learn to…ReWalk? Learning to walk again may seem like a pipe-dream for anyone bound to a wheelchair because of a spinal cord injury. Based on information gathered from several studies and reported by the National Spinal Cord Injury Statistical Center, there are close to 300,000 people just in the US who are living with a spinal cord injury in 2012. About half of those individuals are paraplegic. Today, there is hope for paraplegics around the world thanks to Amit Goffer. He is an engineer from Israel, who in 1997 had an accident that left him a quadriplegic. Through his misfortune and expertise, he founded Argo in 2001. Argo is an international company that developed an exoskeleton called ReWalk.

ReWalk is a device made up of struts linked by actuator motors that is strapped to the legs and waist, and a backpack. Each part contains sensors that feed information to a computer in the backpack, which tells the actuators what to do. The user also has a pair of crutches. Paraplegics don’t have to dream about walking again, it can become a reality with this groundbreaking, assistive technology. Argo offers the ReWalk Personal System, which is currently available in Europe and waiting for FDA approval in the US. ReWalk Rehabilitation is designed for the rehab environment and is available in centers in Europe, Israel, and the US.

ReWalk
Image Source: Argo Medical Technologies Inc.

People are talking about ReWalk. It’s hitting news waves around the globe. Just recently, Argo made an announcement unveiling the newest generation of its ReWalk Rehabilitation device, the 2.0 system.

ARGO Medical Technologies Unveils Advancement of its Exoskeleton Technology With Launch of ReWalk Rehabilitation 2.0

Marlborough, MA – January 22, 2013 – ARGO Medical Technologies has unveiled the newest generation of its ReWalk Rehabilitation exoskeleton that enables individuals with spinal cord injuries the ability to walk again. The 2.0 system is designed to make it easier to treat multiple individuals each day, it also has new software features that support beginner users and new sizing that allow each system to fit a broader range of patients.

ReWalk Rehabilitation 2.0 Highlights:

  • Rapid Exchange: A new slider adjustment mechanism accelerates and simplifies the process of sizing for individual users with a new sizing scale and a simple “click” that indicates the alignment of joints.

 

  • Universal Sizing: The new model fits a wide range of heights in just one device. Clinicians can easily adjust the unit to fit users between 160cm -190cm in height.

 

  • Beginner Gait Mode: Newly enhanced software has improved the learning process to support and transition new users as they learn to take their first steps in the ReWalk.

 

“I am very excited to launch this new generation of exoskeleton technology. We have learned from the everyday use by clinicians and the experience of their patients and believe as a company it is essential we continue to enhance this technology to meet the needs of those working with it.” said Larry Jasinski, ARGO CEO. “The ReWalk Rehabilitation 2.0 offers an experience that is very close to natural walking and this new model will improve the learning curve to allow ReWalkers to quickly gain comfort as they begin to walk independently.”

ARGO currently offers two ReWalk models – the ReWalk Personal, currently available in Europe and pending FDA review in the US; and the ReWalk Rehabilitation which is now available in Europe, Israel and the United States. Both models are designed to provide a customized user experience with on-board computers and motion sensors that restore self-initiated walking without needing tethers or switches to begin movement. The ReWalk uses patented technology with motorized legs that power knee and hip movement. It controls movement using subtle changes in center of gravity, mimics natural gait and provides functional walking speed. A forward tilt of the upper body is sensed by the system, which triggers the first step. Repeated body shifting generates a sequence of steps, which allows natural and efficient walking.

“Training in the ReWalk has changed my life in a way I did not believe possible after I became paralyzed,” said Sgt. Theresa Hannigan, U.S. Army Retired and ReWalk user. “When I use the ReWalk I regain my independence; I have been able to walk a 1 mile road race, and stand up hug my friends and family.”

Video Source: YouTube

 

US Youth Soccer TOPSoccer Program: What is it and how can you participate?

TOPSoccer
Image Source: US Youth Soccer

Sports can be an integral part of the life of a special needs child. It fosters personal growth, exercise, builds confidence, and builds interpersonal and communication skills. Soccer is one sport that can help provide these building blocks. US Youth Soccer offers the TOPSoccer program, which is an outreach, community-based program for young boy and girl athletes with mental or physical disabilities. The disabilities include Autism, Down Syndrome, Muscular Dystrophy, Cerebral Palsy, sight or hearing impaired, and traumatic brain injury. Players are placed according to ability, not by age. Player development is the goal of this program rather than competition. According to the 2010 US Census Bureau report, there are approximately 56.7 million people in the United States with some form of disability, school-aged children aged 5 to 17 make up 2.8 million.

Image Source: New York State West Youth Soccer Association
Image Source: New York State West Youth Soccer Association

US Youth Soccer is the largest member of the United States Soccer Federation. US Youth Soccer is comprised of over 600,000 volunteers and administrators, and most of its 300,000+ coaches are volunteers. The organization spans across America making up 55 member State Associations; one in each state, and two in California, New York, Ohio, Pennsylvania, and Texas. TOPSoccer programs are already in place in some US cities. Contact your local US Youth Soccer State Association office to get involved. If the TOPSoccer program does not exist in your community and there is a need, a program can be created.

What did US Youth Soccer have to say about why America needs the TOPSoccer program?

“TOPSoccer was formed to perpetuate the US Youth Soccer mission statement which is, in part, “to foster the physical, mental and emotional growth and development of America’s youth through the sport of soccer at all levels of age and competition.” There are thousands of children with disabilities who need, and can be provided with, the opportunity to play soccer through the TOPSoccer program.”

Visit the US Youth Soccer website for more information about the TOPSoccer program, to find a local association, or for info to bring the program to your hometown.

Boy and Girl with Coaches TOPSoccer
Image Source: Lexington Youth Soccer Association

 

 

 

 

 

 

 

References:

U.S. Census Bureau, Survey of Income and Program Participation, May–August 2010

U.S. Census Bureau, 2010 American Community Survey

March is Intellectual Disability Awareness Month

Tom CorbettArlington Heritage Group, Inc. is pleased to announce the Proclamation, signed on February 13th, 2013, by Governor Tom Corbett as proclaiming March 2013 as Intellectual Disability Awareness Month in Pennsylvania. He has encouraged the public to support Pennsylvanians with intellectual disabilities and their families. Check your community businesses and organizations for event listings and ways to get involved.

PROCLAMATION

INTELLECTUAL DISABILITY AWARENESS MONTH

March 2013

           WHEREAS, An intellectual disability is defined as a disability characterized by significant limitations both in intellectual functioning and in adaptive behavior as expressed in conceptual, social and practical adaptive skills, which originates before age 21; and

          WHEREAS, people with an intellectual disability are of all racial, ethnic, educational, social and economic backgrounds; and

          WHEREAS, people with an intellectual disability are valued members of society— our friends, neighbors and co-workers—who find fulfillment living everyday lives; and

          WHEREAS, early intervention, education and home and community-based services continue to be vital to enabling citizens with an intellectual disability to function and thrive.

          THEREFORE, In order to recognize the many contributions and challenges of citizens with an intellectual disability, I, Tom Corbett, Governor of the Commonwealth of Pennsylvania, do hereby proclaim March 2013 as INTELLECTUAL DISABILITY AWARENESS MONTH in Pennsylvania. I encourage all citizens to support the efforts and hard work of Pennsylvanians with an intellectual disability and their families as they strive to live self-determined lives and realize their own personal aspirations.

Image Source: PA Office of the Governor

Bring Challenge Air Fly Days to a City near You

Challenge AirRick Amber was a fighter pilot and training officer in the US Navy during the Vietnam War. In 1971 at age 26, Rick became a paraplegic when his jet crashed during an attempt to land. He came back to his home state of Texas and earned several degrees, taught math and science, and had many sports interests and accomplishments including winning the USTA (U.S. Open) National Wheelchair Tennis Championship. During his time as a teacher, Rick was asked to design a curriculum for an aviation class. He realized how much he missed flying and began teaching ground school at night to earn flying hours he needed to be certified with the FAA. It didn’t take long before Rick earned his license as both a Commercial Pilot and Certified Flight Instructor.

One day Rick invited a small group of physically challenged kids to go flying, and after witnessing their incredible attitude change about their disability, the concept of Challenge Air was established. In 1993, Rick bought a Cessna 177B Cardinal airplane which he modified in order to control the brake and rudder pedals. He established Challenge Air as a non-profit organization and took to the skies nationwide, flying special needs children at community events. Rick passed away with cancer in May of 1997 but Challenge Air continues his mission; to build self-esteem and confidence of children and youth (ages 21 and under) with special needs through the experience of flight.

Challenge Air is made up of a network of close to 3,500 volunteers nationwide who come together to create “Fly Day”. Fly Day is a full day event when volunteers come together at a sponsoring airport to create memories of a lifetime for children with special needs and their families. What is Fly Day like? It’s filled with activities: face painting, lunch, and ground school where “co-pilots” learn about flight, then participants take flight for approximately 30 minutes. Co-pilots can fly the plane if they are able to hold onto the controls. Best of all, this event is of no charge to participants.

Challenge Air Group

Fly Day is coming to the following cities:

  • McKinney Fly Day, Cutter Aviation, Saturday, April 20th, 2013
  • Everett, WA Fly Day, Paine Field, Saturday, July 27th, 2013
  • Dallas, TX Fly Day, Business Jet Center, Love Field, Saturday, November 3rd, 2013

 

To find out if a Fly Day event is coming to a city near you, check the listings on Challenge Air’s website.

Even though Challenge Air is based out of Dallas, TX, a Fly Day event can be held anywhere across the country. They have a set of requirements that needs to be met in order to host an event and an application process. For more information on Challenge Air and its Fly Day program, visit their site at www.challengeair.com.

Image Source: Challenge Air