Parents of kids with Down syndrome following US researcher’s ‘memory drug’

by Karl Stagno-Navarra from Malta Today:

Despite the still embryonic stages of the drug, a number of parents from all over the world – including Malta – have contacted this doctor asking whether they should give their children the drug.

A number of Maltese parents of children affected by Down Syndrome, have reportedly been in contact with Alberto Costa, a Brazilian-born associate professor of medicine and neuroscience at the University of Colorado-Denver Anschutz Medical Campus, who has recently discovered a drug might help the memory of people with the condition.

The breakthrough drug called 'memantine' has so far produced what has been described as "cautiously encouraging results".

Despite the still embryonic stages of the drug, a number of parents from all over the world - including Malta - have contacted Costa asking whether they should give their children the drug.

He says no. It's still an experimental drug whose long-term effects are unknown. "Hence, please don't try it," he tells them.

During Costa's clinical experiment, young men and women with Down Syndrome were administered for 16 weeks with memantine, which is normally used by Alzheimer patients to improve their memory.

The subjects showed statistically significant improvements in one of five key memory tests compared with others who took placebos.

Its outcome was not substantial, but enough to draw attention from the Down Syndrome community around the world, following the publication of a lengthy profile of Costa in The New York Times, who is now searching for funds in order for him to broaden his research.

Michelle Sie Whitten, executive director of the Global Down Syndrome Foundation, which has helped fund Costa's research for the past six years, said Costa made a crucial link between Alzheimer's and Down syndrome that will affect future research.

"No one, including Alberto, is jumping up and down" over the results of the clinical trial, she said, "but it showed us much more information than we had before".

Marlborough family presents award to ‘Glee’ actress

from Wicked Local Marlborough:
Actress Lauren Potter of “Glee” was recently honored with the first-ever Samantha Marcia Stevens Family Award of Excellence in Raising Awareness.
The award was presented to the television star on stage at the Massachusetts Down Syndrome Congress (MDSC) 16th annual Buddy Walk & Family Picnic in Wakefield, where Potter was the special guest. Potter is best known for her supporting role on the hit show “Glee,” where she plays Becky Jackson, a teen with Down syndrome who overcomes adversity to become co-captain of the Cheerios Cheerleader squad.
Brian Stevens of Marlborough presented Potter with the award that bears his daughter’s name, in recognition of Potter’s efforts to enlighten the larger society about the abilities of people with disabilities, including Down syndrome. Samantha, who is 6 years old, has Down syndrome and other complex medical needs.
The Stevens family has been working to ensure that people like her have opportunities to lead inclusive, fulfilling lives. In his remarks to the 3,000-strong crowd at Wakefield Commons, Stevens indicated that he is committed to the cause. The Stevens family was on hand for the award presentation and participated in the walk, which raised close to $400,000 to support the programs of the Massachusetts Down Syndrome Congress. Donations can still be made at mdsc.org.
Since her “Glee” debut three years ago, Potter, who herself has Down syndrome, has become the ultimate “self-advocate,” acting as a powerful spokeswoman for policies that bring equality and justice to people with Down syndrome, according to MDSC.
In November 2011, President Barack Obama appointed Potter to the Presidential Committee for People With Intellectual Disabilities, which advises the White House on how to improve access to schools and jobs for people with disabilities.

Read more: Marlborough family presents award to ‘Glee’ actress - Marlborough, MA - Marlborough Enterprise http://www.wickedlocal.com/marlborough/news/lifestyle/celebrations/x1272745785/Marlborough-family-presents-award-to-Glee-actress#ixzz2B55aK9Fo

Down Syndrome Association Namibia Launches

from New Era .com, newspaper for a new Namibia:
Many children living with disabilities are locked up in their homes due to stigma related to their condition, says retired politician, Dr Libertina Amathila.
She says not explaining “important matters on disabilities” results in children being hidden in homes.
One reason for this, she says, is “people fearing to be accused of witchcraft or even being witches themselves and therefore punished for having a disabled child”.
Amathila was speaking at the launch of the Down Syndrome Association of Namibia (DSAN) last Thursday. The organisation was set up to raise awareness about Down Syndrome in society. Amathila said many children affected by Down Syndrome are not known as they are hidden.
“We must all support people living with disabilities and spread the message to parents and communities in general that they are not alone in having children or family members who are affected by Down Syndrome,” said Amathila.
Meanwhile, the Deputy Minister of Education, Dr David Namwandi, who spoke on government’s view on inclusive education, said the dreams of Namibian children who may have extraordinary needs, and who were discriminated against in the past or those who are excluded in one area or another, can be realised.
“As long as we all collectively work toward gaining the understanding that we learn differently, at different pace and still remain convinced that we all can achieve our goals differently,” said Namwandi. The education deputy minister told those in attendance that inclusive education calls for creating an inclusive learning environment where all learners feel welcomed.
“The realisation of the philosophy of inclusive education makes it absolutely possible to have an education system whose task is the provision of quality education to all,” Namwandi said.
Regardless of their physical and intellectual challenges, people living with Down Syndrome, “are just like you and me”, said Eline van der Linden, a mother of a five-year-old daughter with Down Syndrome.
“Unfortunately, society does not necessarily see it that way. They see a person who looks different, speaks perhaps not so clearly or not at all, a person with less social filters who expresses him or herself emotionally more freely. They see the Down Syndrome instead of the person,” Van der Linden said.
Down Syndrome is a chromosomal disorder arising at the time of conception. There is an extra chromosome that causes delays in physical and intellectual development

Growing up with Down Syndrome

from Longview News-Journal by Robin Aaron:
Meredith Brooks is the mother of two little girls, Halle, 4 and Kate, 14 months. Both her daughters are a joy she says, but one of her daughters requires a different type of developmental attention. Kate has Down Syndrome.

Having grown up here in Bowie County as the daughter of Bates Family Funeral Home Director Robbie Bates, she says she had little exposure to the condition that would become closely related to her family.

“I did know a little bit,” Meredith said. “Sadly unless you’re in that situation dealing with a Down’s child, you can’t know what it’s like.”

Meredith Brooks now resides in Colorado. Two months after she and her husband moved there in June 2011, Kate was born.

The family was overjoyed at her arrival and say she looked exactly like her big sister.

“We had no idea she had Down’s till three days after her birth.”

Doctors also found out that baby Kate had four holes in her heart. As of now, three of those have healed. Doctors believe the final one will heal on its own.

According to Brooks, there are a great many misconceptions about Down Syndrome. One of these is the belief that it mainly strikes children whose mothers are ages 35 and older. At least 80 percent of parents of Down’s children are under 35.

The Brooks chose not to do all the invasive prenatal tests because of their faith.

“We had no reason to believe she would not be healthy,” Brooks said.

Since that time, the Brooks say they have learned so much from their youngest daughter about how to look at life and they can’t imagine being without her.

As long as children with Down’s are enriched they can do most anything normal children can do. Infact, Meredith says, Kate beat her sis on some of her developmental Milestones.

It is a misconception that children like Kate are stupid. Now these children are helped early on and are able to do anything most children are able to do. Proper training and therapy are important. Many of them still have decent IQ levels.

“Down Syndrome is a condition, but she is a child just like anybody else and deserves opportunity just like anybody else,” Books said.

According to Meredith, she and her husband have been saddened to discover that early testing produces a lot of false positives and negatives. Sadly 90 percent who learn that their child will be born with Down’s choose abortion.

“That is one of the saddest things to us,” She said. There are about 6,000 Downs children born in US annually. There is no particular race, nationality or religion that it affects.”

Kate’s song, her mom says is sung by Bill and Gloria Gaither. It says “I am a Promise, I am a possibility.”

Life after Depp: Vanessa Paradis in moving film about mothering boy with Down syndrome

from Fox News:
Vanessa Paradis' longtime relationship with Johnny Depp might be done and dusted, but her career is on the upswing.
The French singer/actress is preparing for the U.S. debut of the drama “Café de Flore,” in which she plays a working class woman in 1960’s Paris who is abandoned by her husband after giving birth to a son with Down Syndrome. Brushing off the prejudices and cultural stereotypes of the era, Jacqueline seeks to give her son Laurent as normal a life as possible.
“I was completely taken by the script, it was impossible to say no. Those roles just don’t come often, a beauty and a monster in one person,” Paradis told FOX411’s Pop Tarts column.
The emotional role also gave the 39-year-old a deeper appreciation and affection toward those with disabilities.
“He was so smart and charismatic, we had such a strong connection and there was so much intensity, generosity and grace,” she said of Marin Gerrier, the young co-star with Down Syndrome."He is such a beautiful little boy, really quick and sharp.”
And although her character develops a somewhat unhealthy love and obsession with her child, Paradis – who has a daughter Lily Rose, 13, and a son Jack, 10, with Depp – was able to bring her own intense mothering instincts into the role.
“It’s a very natural thing (to develop an obsession with your children),” she said. “Some people are better at holding back than others.”
And Paradis has just one hope for audiences as they leave the theater.
“Hug your loved ones,” she stressed.
Hailed for its unique storyline, “Café de Flore” has attracted mostly positive reviews at movie aggregator site Rotten Tomatoes, with Paradis’s acting chops praised by critics. Yet despite her growing list of accolades, rave reviews and the 14 years she spent  in the spotlight as the partner of one of the entertainment industry’s biggest names, the very famous French face has so far resisted a cross over to the Hollywood arena.
“I have never done a Hollywood film,” she said simply. “I can imagine the budgets are much bigger than in France, but I’ve never made one.”
Yet she does have a very clear vision of what she looks for in roles these days, and won’t sign on to just anything.
“I need to be swept off my feet, something that makes me dream and vibrate,” she added. “Roles that do that don’t come often. When I read the script, I need to be passionate about it.”
Read more: http://www.foxnews.com/entertainment/2012/10/30/life-after-depp-vanessa-paradis-in-moving-film-about-mothering-boy-with-down/#ixzz2An1KU1cA