actor with DS steps up to the mark in groundbreaking new play

from Banbridge Leader:

AS a versatile young actor Mark Blevins is used to playing different roles, but this week he takes on his most challenging yet as the lead in a groundbreaking new play about Down’s Syndrome.

The 19 year-old from outside Lawrencetown has been working hard over the past number of weeks perfecting his lines - and coping with ridicule and bullying while living the hard luck life of his alter-ego, Luke Sharkey.

And while some of his fellow cast members in ‘Down’s But Not Out’ have been struggling with the hard-hitting lines in the script, Mark has been the first to reassure them “it’s only acting”.
This empathy with his peers is all the more significant because as well as playing a young person with Down’s Syndrome, Mark has the genetic condition himself.

Written by Lurgan man Raymond Murray, the play exposes the benighted attitude to Down’s Syndrome prevalent in the Sixties compared to today, when young people with a disability have the benefit of increased educational, employment and recreational opportunties which parents 50 years ago could only dream about.

As a father of a Down’s Syndrome child himself, the writer has drawn on personal experience in part, but for the early years relied on research and anecdotal evidence for the play which opens in Lurgan Town Hall on Thursday (December 1st).

“During the scenes set in 1960, there are some very harsh moments for Mark to endure,” says Raymond, a father-of-three and Housing Executive employee who writes plays in his spare time. “His condition is ridiculed, but I’ve tried to recreate how it might have been and he has shown great maturity in accepting this.

“I certainly haven’t hidden behind any hedges with the script, but it’s not all tough for Mark, as the scenes in 2010 allow him to show how full a part people with Down’s Syndrome play in modern society. Indeed, this contrast between 1960 and 2010 is the principal theme of the play.”

A frequent performer with Stagestruck in Banbridge and Craigavon-based MADS (Moyraverty Arts and Drama Society), Mark has been involved in amateur drama since the age of four, garnering copious medals along the way and going on to gain a GCSE in the subject - impressivley obtaining an A-grade in the practical part of the exam.

He most recently appeared in Bugsy Malone, a youth theatre project which ran at Belfast’s Grand Opera House during the summer.

However, despite its poignancy, the play is also laced with humour, as Raymond seeks to lighten the emotional roller coaster journey awaiting his audience: “It was a challenge to strike the right balance between between entertainment and education,” he says, “but I have hope I have managed it.

“Laughter is important of course, but I also wanted to show the disrespectful way people with Down’s Syndrome used to be treated and how they were subjected to awful names like ‘mongol’ or ‘simple’ which are taboo today.

“Maintaining the dignity of the condition was a priority and to have cast someone else in the lead role would have run a real risk of mocking the very thing I am seeking to bring to public attention.
“I am 52 now, but even I remember a dismissive attitude to the condition when I was growing up. Education in mainstream school was just not an option and neither was employment. I wouldn’t go so far as to say prejudice has totally gone away - you only have to go back to 2006 to find out that 92 per cent of women chose to abort Down Syndrome babies - but things are definitely moving in the right direction.

“Mark is a real living example of how things have moved on in 2011 - he holds down two part-time jobs, is still in education and arrives at our weekly rehearsals well prepared and never missing a line.”

For the star of the show, it has been a labour of love while sending home an important personal message: “I am bullied in the play, but it doens’t upset me as it’s only acting. There are also really funny bits as well, so I would say to everyone, ‘come for a night’s craic and learn more about Down’s Syndrome’.”

For Mark’s mother Ann, some of the scenes are deeply uncomfortable, but she, like the play’s author, believes the whole unpalatable truth needs to be told.

“There are really emotional scenes and at the start I worried about them,” she says, “but the message is very positive. As a family we are very proud of Mark and what he has achieved. You have to remember that years ago, people with Down’s Syndrome wouldn’t even have had the chance to act in a play like this.”

ABLE Act - Update & Action Needed

From NDSS:

Achieving a Better Life Experience Act (ABLE) of 2011 (S. 1872/H.R. 3423)
The Achieving a Better Life Experience Act (ABLE) of 2011 (S. 1872/H.R. 3423) was introduced on Nov. 15th in the 112th Congress (2011-2012 Congressional cycle). The bill is being led by a bipartisan,bicameral set of Congressional champions, including Senator Robert Casey, Jr., (D-PA), Senator Richard Burr (R-NC), Congressman Ander Crenshaw (R-FL), Congressman Chris Van Hollen (D-MD), and Congresswoman Cathy McMorris Rodgers (R-WA).

The ABLE Act will give individuals with disabilities and their families the ability to save for their child's future just like every other American family, and help people with disabilities live full, productive lives in their communities without losing benefits provided through private insurances, the Medicaid program, the supplemental security income program, the beneficiary’s employment, and other sources. The account could fund a variety of essential expenses for individuals, including medical and dental care, education, community based supports, employment training, assistive technology, housing, and transportation.

The ABLE Act provides individuals with disabilities the same types of flexible savings tools that all other Americans have through college savings accounts, health savings accounts, and individual retirement accounts. The legislation also contains Medicaid fraud protection against abuse and a Medicaid pay-back provision when the beneficiary passes away. It will eliminate barriers to work and saving by preventing dollars saved through ABLE accounts from counting against an individual’s eligibility for any federal benefits program. We currently have 6 cosponsors in the Senate and 40 in the House. If your Member hasn’t signed on, please take a few moments and email your Rep and two Senators by clicking here.
Additional Resources:

Washington Times Article: ABLE Act is a Step Worth Taking
ABLE Act of 2011 Background
ABLE Act Customizable Press Release
ABLE Act Press Conference Photos      
Actress Lauren Potter Speaks Out About the ABLE Act
Press Release: ABLE Coalition Grows to 49 Advocacy Organizations

 

Left: Sophia Pineda, a self-advocate from Fredericksburg, Virginia with Congressman Ander Crenshaw (R-Florida) at the ABLE Act Introduction Press Conference

Right: Sara Wolff, self-advocate and NDSS Board Member, speaking at the ABLE Act press conference

Special-needs Scout Steve Lape awaits Eagle Scout award

from TwinCities.com:
 
After more than three decades and 27 merit badges, Steve Lape is ready to receive the highest honor in the Boy Scouts - his Eagle Scout Award.
 
Becoming an Eagle Scout is an honor for anyone, but Lape's case is even more noteworthy: He's 53 years old and has Down syndrome. Recently, he's begun to experience dementia.
 
"No one's too old to be a Boy Scout," said Charlie Opp, a leader of Lape's troop and one of the volunteers who lead Troop 594. Based in South St. Paul, it serves adults with special needs.
 
Though Lape can still walk, he generally uses a wheelchair. He wears a Scout uniform shirt and a sash full of merit badges to his Scout meetings. The smile is the first thing people notice about him.
 
"Steve has a signature grin that just warms everybody's heart. It lights up an entire room," Scoutmaster Jim Rupert said.
 
It's a smile he's been sharing with Troop 594 for a long time.
 
Lape's father, Jack, encouraged Lape to join when the troop was founded in 1973. At the time, Steve was living alone with his father, who thought scouting would give him something to do besides his job at Goodwill.
 
"The troop became a pretty big part of his social life," Jack Lape said. It also gave him a chance to experience new things. "At summer camp, they shot arrows, walked in the woods, and they had a bunch of fun there."
 
Steve Lape is the only founding member still with Troop 594. The troop was larger in the past but today has five members, ages 44 to 68. They've been together with the troop since the 1980s.

Jim Rupert, Troop 594's scoutmaster for the past 11 years, said camping is out for the troop now, given members' ages. But that doesn't mean the troop is not active.
 
"We have a meeting every other week, and we work on one or two merit badges a year," he said.
 
Each meeting is split in two parts. Skills instruction or merit badge work takes up the first half. Then Rupert pulls out a portable magnetic dart board for the scouts to play. They are encouraged to do their best and the leaders carefully keep score.
 
"Sometimes after we're done with the first half of the meeting, I'll ask the Scouts what we should do next. They're always quick to say, 'Darts!' They really enjoy playing," Rupert said.
 
PARTIES KEEP THEM TOGETHER
 
It was the social element that first brought Steve Lape to the troop and has kept him with it.
"That's been one of our key issues all of these years: we're going to have a good time," said Opp, the troop's charter organization representative. "We have five guys, all in pretty much the same age category, who know one another and keep coming back for more."
 
Troop 594's calendar includes a spring picnic, a summer mini-golf outing and Halloween and Christmas
parties. The troop also carries out a service project for the Optimist Club of St. Paul - the troop's sponsor since its founding - by conducting a flag ceremony at their annual holiday meeting.

Troop leaders also recognized the role that special events play in keeping the troop going. "Parties are a real important part of keeping us connected and together," Opp said.
 
As the troop's longest serving member, "Steve's led his peers by his docile temperament and his pleasant smile," according to his sister Alex Lape. "That's just who he is."
 
Lape's father and sister give credit to the troop leaders, past and present, for the success Steve has had.
 
"They're tremendous people who have been so generous with their time over the months and years," Jack Lape said.
 
Opp has a different view.
 
"We wouldn't do it if we didn't get something out of it," he said. "You see the world differently today than when you joined."
 
The troop's leaders - Opp, Rupert and many others - worked hard over the years to help the scouts advance. By early 2011, all members of the troop had completed the requirements for Eagle Scout rank with the exception of the required service project.
 
TIME IS TIGHT
 
Boy Scouts typically have until their 18th birthday to earn their Eagle Scout rank. Scouts with special needs don't have that deadline.
 
Renee Fairrer, manager of public relations with the Boy Scouts of America, based in Irving, Texas, said on average between 20 and 30 scouts with special needs earn their Eagle Scout Award each year. That contrasts with the 57,000 traditional scouts who earned the award in 2010.
 
"It's highly unusual for a scout (Steve's) age to receive it," Fairrer said.
 
She added that the Boy Scouts began tailoring activities for those with special needs in the 1960s.
 
Special-needs scouts still need to complete all the requirements expected of any other Scout. This is a challenge even though a "reasonable accommodation" can be made to fit the merit badge and rank requirements to the level of each individual.
 
"Originally, we wanted to have all five earn their Eagle Scout rank at the same time," Rupert said.
 
But in January 2011, Steve Lape's health began to decline. His dementia had been diagnosed five years ago. At that time he had to move from the 15-person home he had lived in in South St. Paul for 25 years to a six-person home in Arden Hills where he could get more personalized care.
 
Rupert and Opp decided to help Lape push forward with the service project - before his health declined much further.
 
In October, Lape led a group of 15 volunteers to complete several winterizing projects at the nonprofit North Star Museum of Boy Scouting and Girl Scouting.
 
With his Eagle Scout service project complete, all that remains for Lape to do is pass a board of review and wait for his application to be approved by the national Boy Scouts. If that goes as planned, he'll be presented with his award at a ceremony in January.
 
In the meantime, Lape has continued to slow down. He no longer likes to go out at night and it has become painful for him to stand.
 
Lape also speaks less than he did in the past.
 
He still has the smile.
 
"It's the only part of his soul still visible to me," Alex Lape said.

By Jacob T. Piekarski jpiekarski@pioneerpress.com

Boy's Disney Dream Comes True

from WBOY:

The Sunshine Foundation granted another Barbour County boy his dream come true, sending him and his family to Disney World.

Ryan Durst is a 13-year-old boy from Philippi.

He has a brother Ethan, and a sister Emily.

Ryan's story began at birth when he was diagnosed with Down syndrome.

"For many years we knew that Ryan was a little different than other Downs kids," said his mother Barbara Durst. "He wouldn't talk and he always ran away, and there were some sensory issues that he had as well."

It was then one day when Ryan's mother Barbara was working at a school with special needs kids, that she noticed similar traits between Ryan and her Autistic students.

After a consultation with his doctor and a specialist, at age 7, Ryan was diagnosed with Autism on top of his Down syndrome.

Ryan has endured the struggles that come along with Down syndrome and Autism.

He also has endured the struggles the come along with being in a military family.

But things will be different this holiday season when the Sunshine Foundation brings the Durst Family a dream come true, sending them to Disney World.

"We didn't really expect it, we are grateful for it," said Ryan's father Sgt. Martin Durst. "We've been trying for many years to get our children to Disney world, but financially it never worked out on a one income family, but this came by as a wonderful gift."

"The greatest thing is probably being able to be there as a family," said Barbara Durst. "And seeing our kids interact with one another and knowing that it's something they enjoy doing."

This year the Sunshine foundation turned 35-years old.

The foundation says they are the ‘original wish-granting organization' and have granted over 36,000 wishes.

While they say every single one is different, organizers feel the same way about everyone of them.

"We know that there is a lot of struggle and sad times, and a lot of hard times," said Sunshine Foundation's President Kate Sample. "But this is a time for me to see when everyone is happy and for the foundation to enjoy."

If you would like to nominate a child to receive a wish, or donate towards the organization you can visit their website.

By Andrew Clay, Monongalia and Preston County Reporter

Neuron Finding Lifts Hopes for Down Syndrome Drug

from Joan Arehart-Treichel, Psychiatric News:

Discovering a dearth of acetylcholine and norepinephrine in the hippocampus of a mouse model of Down syndrome opens promising therapeutic avenues for people with the disorder.

Down syndrome is usually due to each cell in the human body having three copies, rather than two copies, of chromosome 21. This heartbreaking illness leads not just to a spate of physical abnormalities and cognitive dysfunction, but often to early-onset Alzheimer’s disease.

A pivotal brain region affected by Down syndrome is the hippocampus. Now scientists at Stanford University School of Medicine have made two important findings about what occurs in that region in a mouse model of Down syndrome, which purportedly translates to people with the syndrome.

 

One is a loss of two types of neurotransmitter-producing neurons in the hippocampus—acetylcholine-producing neurons and norepinephrine-producing neurons. The other is that this loss is linked with the overexpression of the amyloid precursor protein gene in the hippo-campus. Mutations in this gene, which is located on chromosome 21, are known to lead to early-onset Alzheimer’s, and it may be that early onset of Alzheimer’s pathology in people with Down syndrome is due in part to overexpression of the amyloid precursor protein gene.

 

These findings have provocative therapeutic implications for people with Down syndrome, the scientists also pointed out online September 27 in Biological Psychiatry. For instance, although the amyloid precursor protein gene should be a primary therapeutic target in Down syndrome, there are no safe and effective medications on the market to reduce the gene’s expression. In contrast, since a paucity of norepinephrine-producing neurons in the hippo-campus also seems to contribute to Down syndrome, medications that enhance norepinephrine levels in the brain and are already on the market to treat attention-deficit/hyperactivity disorder might be of therapeutic benefit to individuals with Down syndrome.

 

Moreover, such medications might also subdue the action of the amyloid precursor protein gene in such individuals, they speculated.

 

“We are indeed working on this group of drugs—drugs that are able to increase norepinephrine levels and that have already been approved by the Food and Drug Administration—in our mouse models,” Ahmad Salehi, M.D., Ph.D., a clinical associate professor of psychiatry at Stanford and the study’s senior investigator, told Psychiatric News. “This strategy could speed up the development of a treatment for cognitive function in Down syndrome enormously.”

 

The scientists’ discovery of a paucity of acetylcholine-producing neurons in the hippocampus of an animal model of Down syndrome holds therapeutic promise, the researchers noted. In fact, other researchers reported eight years ago that the Alzheimer’s drug donepezil, which slows the break down of acetylcholine in the brain, might improve cognitive scores and expressive language in children and adults with Down syndrome.

 

Yet if donepezil improves cognitive function and language in these individuals, is there reason to believe that medications that increase norepinephrine would be superior to donepezil in that regard? Asalehi believes there is. “I think using norepinephrine-ergic drugs would be far superior to cholinergic ones for the following reasons: The norepinephrine system has some regulatory effects on the cholinergic one. It has been shown that lesions in the former lead to increased severity of cholinergic deficits; most adults with Down syndrome will show Alzheimer’s-related pathology, particularly amyloid plaques. There are new studies showing that increasing norepinephrine levels in mouse models of Alzheimer’s significantly reduce amyloid accumulation. These findings suggest that using norepinephrine-ergic drugs might not only restore cognition in kids with Down syndrome, but also reduce Alzheimer’s-related pathology in adults with the syndrome.”

 

“Studies such as this one help to further our overall understanding of central nervous system function and in particular differences seen in individuals with Down syndrome,” Melanie Manning, M.D., director of the Center for Down Syndrome at Stanford’s Lucile Packard Children’s Hospital, told Psychiatric News.

 

“Many of the families of individuals with Down syndrome follow results from research studies such as this one with great interest. They express a desire to learn more about potential clinical applications that lie ahead.”

 

The research was funded by the Mental Illness Research, Education, and Clinical Center Department of Veterans Affairs; Down Syndrome Research and Treatment Foundation; Thrasher Foundation; and Alzheimer’s Association.

 

Ahmad Salehi, M.D., Ph.D.: 

 

An abstract of “Neurobiological Elements of Cognitive Dysfunction in Down Syndrome: Exploring the Role of APP” is posted at <www.biologicalpsychiatryjournal.com/article/S0006-3223(11)00822-5/abstract>.