Tuesday, July 31, 2012

Learning compassion? Olympic Spirit?

Maybe these athletes need to learn compassion and respect for not only those with special needs, but also for all of humanity.  Olympians are put on pedestal.  Everything they say and so is watched and emulated.  Maybe all the Olympic athletes need to take the R-Word pledge? 

At least athletes that do not respect all humanity are expelled from the Olympics.  I just hope they learn that words can and do hurt.

Switzerland have expelled Michel Morganella from their Olympics squad after he posted a racist message on Twitter.

Morganella: Expelled from London Olympics

Morganella was part of the Swiss team that was defeated by the South Korean's 2-1 on Sunday.
After the game he posted on Twitter: "I am going to batter the Koreans, burn them all... bunch of 'trisos'."
'Trisos' is a French slang word for people with Down's Syndrome.
His remarks were met with firm action from the Swiss Olympic Team as their team chief Gian Gilli held a press conference on Monday.
He said the post "discriminated against, insulted and violated the dignity of the South Korea football team as well as the South Korean people".
Swiss newspaper Le Matin published the tweets from the players account but the tweets have since been deleted following the furore.
The 23-year-old defender is the second Olympic athlete kicked off a team for offensive Twitter comments.
Greece dropped triple jumper Voula Papachristou last week after she posted a comment mocking African immigrants.

Another account of the story.

UK: Second Olympian banned for offensive tweet

Swiss soccer player Michel Morganella has been booted off his team for an offensive tweet he posted after Switzerland's group stage defeat against South Korea.

Swiss Olympic team chief Gian Gilli said on Monday that Morganella will be stripped of his accreditation two days ahead of the team's final group match with Mexico.

At a press conference on Monday, Gilli said Morganella had "discriminated against, insulted and violated the dignity of the South Korea football team as well as the South Korean people."

On Sunday, Switzerland lost to South Korea 2-1. After the match, he said he'd "batter the Koreans, burn them all" and referred to them using an insulting French word for people with Down's Syndrome.

His Twitter account, @morgastoss, has been shut down, a spokeswoman for the team said. She also said Morganella had apologized. The Swiss 23-year-old right back plays his club football with Palermo in Italy.

Morganella is the second person to be banned from the Olympics because of a tweet. Two days before the opening ceremony, Greek triple-jumper Paraskevi Papachristou was expelled from Greece's team for tweeting "statements contrary to the values and ideas of the Olympic movement," as the Hellenic Olympic Committee put it.

Papachristou had already drawn attention with links to videos and websites of the extreme-right Golden Dawn political party. But it was a tweet she posted the week of the opening ceremony that outraged the committee.

Commenting on recent cases of mosquitoes carrying the Nile virus appearing in Athens, she tweeted "With so many Africans in Greece, the West Nile mosquitoes will be getting home food!!!"

Isidoros Kouvelos, the head of the committee, appeared on the TV station Skai and said, "We are not here just to get medals, but to promote the Olympic ideals, to show our character."

Papachristou also issued apologies.

mz/msh (Reuters, AP)


Be gentle.

Sunday, July 29, 2012

Will you be a Champion for Special Olympics?

Did you know more than four million athletes compete in Special Olympics worldwide?  And the organization is run by volunteers?  Our family is proud to participate and volunteer for Special Olympics.  You can volunteer or give financial support to these special athletes.

Stats from the 2011 Special Olympics Reach Report

Read more from The Special Olympics web site to learn how you can become a Champion of Specail Olympics.

Steady Growth of Special Olympics Means Reaching More People with ID

For the estimated 200 million people on Earth who have intellectual disabilities (ID), Special Olympics offers a place to learn, to be challenged and to be accepted for who they are. The most recent stats on our reach and growth show Special Olympics has reached 4 million athletes with ID worldwide.

Accelerating Growth

The new numbers about Special Olympics are laid out in the new 2011 Reach Report. The important, impressive numbers are summarized in this infographic.
At the first games in 1968, Special Olympics was a bold idea with about 1,000 participants. It took decades to reach 1 million athletes with intellectual disabilities; that milestone came in 2000. This year, Special Olympics' reach exceeds 4 million athletes.
That may not be the most impressive number, though. Consider that Special Olympics had 53,601 competitions in 2011. Not practices, but competitions in one or more of our 32 sports.
That means that on an average day, there are 146 competitions going on around the world. Each of those competitions represents many hours of training and practice by our athletes. And supporting those athletes are 306,652 volunteer coaches.

Volunteers Fuel the Movement

Special Olympics is a volunteer movement, first and foremost. All those coaches are putting in hours because they believe in Special Olympics' message of empowerment and respect.
Think of who else supports the athletes and coaches: volunteers who work behind the scenes and in public ways to support the competitions and local efforts. Special Olympics counted more than 750,000 volunteers in addition to the coaches.
One particular set of volunteers uses their years of training and experience in the medical and health professions to provide free health screening clinics to our athletes worldwide. The Healthy Athletes program provided 765 clinics and screened 117,000 athletes with ID in 2011.

Every Day, All Around the World

Our Athlete Leadership Programs are also moving onward and upward, and we take pride in our many new athlete leaders. In fact, we now have 28,896 athlete leaders! Unified Sports is also continuing steady growth: 9 percent in 2011. That means more than a half-million athletes and partners took part in Special Olympics unified events -- bringing together athletes with and without disabilities -- all around the world.
With 225 programs in 170 countries, there's always something exciting going on at Special Olympics, every single day. This year proved that once again that Special Olympics is more than just a game or a race or a tournament -- it's a community, a life-altering experience, a global force and a movement.

Be gentle.

Saturday, July 28, 2012

Saturday Smile

Can you tell Davey just loves these pups?  And they love him too.

Be gentle.

Friday, July 27, 2012

Boy Scout Troop 409, a special group of Scouts

Love a heart warming story for a Friday!

Richard and Claudia Coleman Lead a Boy Scout Troop with a Difference

Thursday July 26, 2012 11:30 AM EDT

Richard and Claudia Coleman Lead a Boy Scout Troop with a Difference

Richard and Claudia Coleman thought they'd sail their boat and enjoy the easy life after retiring to Pensacola, Fla., in 1986. Then Richard answered an ad in the paper: a special-needs Boy Scout troop sought an assistant leader. 

Before long he'd taken over and, with Claudia's help, built the group into something special. For more than 25 years Troop 409, whose members are mostly grown men with disabilities such as Down syndrome, autism and Spina bifida, has earned 1,000 merit badges and produced eight Eagle Scouts. 

Richard, 66, a former Air Force sergeant, deploys tough love to teach skills like cooking over an open fire, building weather vanes and staking out campsites. "To me they aren't disabled," he says. "They're scouts, and that's how I treat them." 

Parents say the troop bestows the sense of dignity and accomplishment any of them would want for their child. "Every time Gordon gets a merit badge," says Teresa Roser, whose 23-year-old son Gordon has Down syndrome, "he stands a little taller." 

Scouts like Mark Drummond, 36, can attest to that. For 24 years he worked for scouting's top honor, Eagle Scout, clinching it by leading a park-bench building project. "When I made Eagle, my heart dropped to my ankle," says Drummond, who has autism and bipolar disorder. 

In their time with the troop, they've also picked up life-saving skills. One night in 1994, after Jerry Ard choked on a pork chop, his son, Bradley, 40, who has Down syndrome, sprung into action, performing the Heimlich maneuver. "I love my father so much," says Bradley. "I didn't want him to get hurt." 

Derek Connell, 55, who has Aspberger's syndrome, says he and his fellow scouts owe a lot to the Colemans. "If we make a mistake, Mr. C keeps working with us," says the Eagle Scout. 

Adds Keith MacPhail, 43, who was born deaf and with Down syndrome, and has earned 51 badges: "I love them." 

Be gentle.

Thursday, July 26, 2012

Gigi's Playhouse, positive awareness of Down Syndrome

I wish I had known about GiGi's Playhouse when our son was born.  

Just what is GiGi's Playhouse?  From the Gigi's Playhouse website.

About Gigi's Playhouse

What started as a local playhouse in a suburb of Chicago has turned into an international phenomenon, spreading awareness and inspiration to everyone it touches. GiGi’s Playhouses are Down syndrome awareness and educational centers that provide resources, specialized teaching, and support to individuals with Down syndrome, their families and the community.
GiGi’s Playhouse centers evolved into educational centers with a focus on national awareness for Down syndrome. All of our programs are free to our families and are therapeutic in nature. Each of them are designed to work on specific skill development in several areas including speech and language, social development, and fine and gross motor skills. Our literacy program alone teaches thousands of kids with Down syndrome to read around the nation! The newest awareness project “One Million Voices”, along with our “i have a voice” campaign, seeks to change outdated perceptions and replace those images with beautiful, thought provoking, intelligent images.
In just 9 years, 12 Playhouses have opened and  there are more in the works! GiGi’s is committed to the important mission of spreading positive and accurate information about
Down syndrome through education. We know that by helping individuals with Down syndrome reach their highest potential, we can change outdated perceptions that people may have. The end result is a world that is empowered with knowledge, compassion, and inspiration – what a better place for all of us!

Programs Overview

GiGi’s offers over 20 different types of programs, 15 of which are educational in nature.  The program development is very strategic for children with Down syndrome and their families.  Each and every program has a purpose with specific goals in the areas of social skill development, speech and language, or academic achievement.   The programs are structured within the following categories:
CategoryProgram Name
Positive BeginningsPrenatal Diagnosis support • Open Play • 2 & under
Therapeutic movementCrawlers • Walkers
Social Skill Development ..Hop, Skip & Jumpers (3-5yrs) • Playhouse Pals (6-8yrs) •
Kids Club (9-12yrs) • Teen Group (13-17yrs) • Friday Friends (18+)
Educational ProgramsLiteracy • Phonics •  Handwriting • Math •Skill Builders

Positive Beginnings

The Positive Beginnings programs are geared towards the perception that the parents, siblings and family members have towards their new baby with Down syndrome.  These programs allow parents to feel the fear associated with this new and unfamiliar diagnosis, but then put that fear in its’ place and replace with hope and appreciation, even excitement.  The end result is that the parent sees their baby as just that — a baby, their son or daughter.  Not as a diagnosis.  Once the parent gets to this point, the child’s potential is limitless.

Therapeutic Movement

 The Crawlers and Walkers programs are designed to give each child a firm base on which to stand, literally.  Though each child will be receiving Early Intervention therapies outside of GiGi’s, it is important that the parents are reinforcing those gross motor skills daily.  Children with Down syndrome have low muscle tone; thus the more practice at crawling, walking and general gross motor skill development, the better.  The programs that GiGi’s provides, allows yet another place where the parents can network and learn new strategies to ensure the success of their child’s walking skills.  These programs are facilitated by licensed physical therapists.

Social Skill Development

Once the kids are walking, the focus of GiGi’s programs becomes social interaction.  These are the kids who are in school or just graduated from school and thus friendship development is very important. These skills include anything from turn taking, making eye contact, inviting friends to play, appropriateness in public, etc. Consequently, friendships are developed through each class as well.

Educational Programs

The Educational component is beneficial at any age and as the students are able to meet success, the end result is a better classroom experience for these students, their teachers and the parents as well. These programs are run by teachers and therapists.
It’s important to state that each category (positive beginnings, therapy, social, educational)  is reinforced at every level.  During the Positive Beginnings at Open Play, socialization is reinforced because they eat lunch together which provides a great setting for practicing social appropriateness.  During Social skill development programs, the activities incorporate gross motor skill practice. Thus, the social, educational, and therapeutic components are cross categorical — meaning each is practiced and developed in every single program offered.  As a result, the self esteem of both the child and the parent increases.  This self esteem is what propels individuals with Down syndrome to be successful.

Hope there is a Gig's Playhouse near you!

Be gentle.

Wednesday, July 25, 2012

Pupdate Three weeks of puppy piles

Our Peruvian pups are three weeks as of yesterday.  They are amazing.  Their eyes are open, they are walking and talking (well growling, moaning, and little barks).  We spend way too much time just playing with them.  This is great for the puppies but not so much for keeping the house super clean.  LOL.

Please enjoy these pictures of our little darlings.

Be gentle.

Tuesday, July 24, 2012

Let's get Becky to college!

As a parent, I know I want my children to all be successful in life and all have as many opportunities to reach their goals and aspirations. For me, one of the keys to the successes of life is an education.  I want all of my children to have the opportunity to grow and learn in college.   One of my favorite TV shows, Glee has a character on the verge of one of those momentous occasions, completing high school.  For my kids, after high school, college is the next step to their education.  My girls are both graduates of college (Go Team!) and I am encouraging my boys to set the goal of graduating from college and shooting for the stars!

Let's get my favorite character on Glee to college.  Most of Becky's friends who were seniors in last years's season are off to college.  Let's show all of the fans of Glee that going to college and succeeding is a natural progression in life's journey for all, including those with Down Syndrome.

Still of Lauren Potter in Glee

Will you join the Twitter campaign to get Becky to college?  Let's let the writers of Glee know that we ALL want Becky Jackson to go to college.  Tweet using the hashtag  #College4Becky.  

From Disability Scoop.......

College Urged For ‘Glee’ Character With Down Syndrome


When students on Fox’s “Glee” graduated this season, they all headed to college. Now a Twitter campaign is calling on the show’s writers to make the same plan for a character with Down syndrome.
Using the hashtag #College4Becky, a social media push launching this week is encouraging the “Glee” writers to send Becky Jackson to college at the end of the show’s next season. Though the character is believed to be a rising high school senior, little has been said about her future.
“All of Becky’s friends on the show are heading off to college next year. That’s something she can do too — but we haven’t yet heard what her plans are after graduation,” reads an open letter to the writers of “Glee” from the campaign’s organizers at Think College, a national clearinghouse on college options for students with intellectual and developmental disabilities that’s housed at the University of Massachusetts Boston.
“If you make college plans for Becky, you’ll be raising the expectations of all your viewers with Down syndrome and other intellectual disabilities,” the letter reads.
Currently, Think College’s database lists 199 postsecondary programs at colleges and universities across the country specifically for people with intellectual and developmental disabilities. Nonetheless, awareness of college options for this population often remains limited.
“We want to plant a seed,” said Meg Grigal, the co-director of the group behind the campaign. “College is a real option for people with intellectual disabilities.”
Lauren Potter, 22, the actress with Down syndrome who plays Becky Jackson on “Glee,” attends Irvine Valley College in Irvine, Calif. in real life.
“I know she will love the idea (of Becky going to college) because she loves the idea that she is in college,” Potter’s mother, Robin Sinkhorn, told Disability Scoop, adding that she had not yet had an opportunity to discuss the campaign with her daughter who was traveling Monday. “It would be a great storyline.”
Potter’s character has long been a fan favorite in the disability community and the actress has not shied away from taking a stand. She’s used her platform as a “Glee” cast member to raise awareness about bullying of people with disabilities among other issues and currently serves as a member of the President’s Committee for People with Intellectual Disabilities.
Officials at Fox did not respond to a request for comment about the Twitter campaign.
“Glee” returns Sept. 13 on Fox.

Let's get the message out there!  We want Becky to go to college!


Be gentle.

Sunday, July 22, 2012

Sunday Smile

Some days you just need a smile.  Davey loves to make people smile.  Enjoy.  I always smile when I think of how silly and creative Davey can be.

Be gentle.

Saturday, July 21, 2012

Inspiring greatness. Special Olympics Style

Every time I hear advertising for the Summer Olympics starting soon, I smile since my son is a Olympian too.  A Special Olympic Athlete.  I just am so proud of him.  And I am proud to be involved in this incredible program.

We are proud to represent the Galt Chiefs and the Northern California Special Olympics.

What exactly is Special Olympics?

Special Olympics is an international non-profit, providing year-round sports training and athletic competition in a variety of sports to children and adults with intellectual disabilities, free of charge.
Special Olympics Northern California serves over 15,700 athletes from the Oregon border to Monterey and Tulare counties.

What is "intellectual disability"?

Intellectual disability is characterized by significantly sub-average intellectual functioning, existing concurrently with related limitations in two or more of the following adaptive skill areas: communication, self-care, home living, social skills, community use, self direction, safety, and functional academic, leisure, and work. Intellectual disability manifests before age 18.

Who can participate?

Special Olympics is open to every person with an intellectual disability, regardless of the level or degree of that person’s disability and whether or not that person also has other mental or physical disabilities.
Athletes must be at least 8 years old to compete at a sports competition. Athletes between 5–7 years of age can come out for practices, but cannot compete. There is no “cap” on how old an athlete can be. We have some very active athletes who are in their 50s and 60s and some are still going strong in their 70s!

What sports do you offer?

Athletes can choose from 12 different sports that are offered throughout the year: Aquatics, Basketball, Bocce, Bowling, Floor Hockey, Golf, Powerlifting, Soccer, Softball, Track & Field, Tennis and Volleyball. Athletes can participate in as many sports as they wish. Go to the Sports page to find out about your favorite sport!

Do you offer programs for athletes of all levels and abilities?

Special Olympics prides itself on providing programs for all skill levels. By using preliminary scores and times to create teams and brackets, we ensure a competition environment that is balanced in terms of skill, age and gender.

Where are you located?

Our headquarters are in Pleasant Hill, California, but we also have county contacts all across Northern California who oversee the local volunteer programs. Go to our Northern California Counties page to find a local Special Olympics office near you.

Who finances you?

Our programs are free to all eligible athletes and are made possible thanks to the generous support of individuals, foundations and businesses who believe in the values of the Special Olympics. Go to Our Mission page for a copy of our annual report and a list of our major financial supporters.

What are the benefits of participating?

Children and adults with intellectual disabilities who participate in Special Olympics develop improved physical fitness and motor skills, greater self-confidence and a more positive self-image. They grow mentally and socially and discover their own courage as contributing members of their communities. The rewards of Special Olympics are truly life-long!

Does it cost to participate in Special Olympics?

The Special Olympics is absolutely free! The programs we offer are free for our volunteers and competitors thanks to the generous support of individuals, organizations and corporations in our communities. We receive no federal or state funding.

Can my athlete participate in a sport he or she doesn't know how to play?

Absolutely! Special Olympics firmly believes that everyone can benefit from being part of a team, no matter their skill level. Our coaches and volunteers will work with your athlete to teach them the skills they need to participate in their sport of choice.

What is the dress code at practices?

Athletes should wear appropriate athletic attire to sport trainings. Usually, this includes athletic shoes with non-marking soles, shorts or sweats, and a t-shirt. Swimmers must wear a swimsuit and bring a towel. Athletes who are not dressed appropriately will be asked to observe the practice for that day.

How do I find out what training and competitions are upcoming in my area?

Go to the Training and Competitions Calendar to find out about events and competitions near you.

Does Special Olympics need volunteers?

Yes! Volunteers are the lifeblood of Special Olympics Northern California. They serve as coaches, officials, trainers, directors and a variety of other valuable roles. Special Olympics Northern California is always on the look-out for new helping hands. Do you want to help a few hours per week? Once a month? Once a year? All contributions great and small leave their mark. You can help. You can make a difference. Go to our Volunteers page to find out how.
If you have a question that has not been answered above, please emailinfo@sonc.org and someone will respond to your question.

If you have a child or family member that might like to participate, please help them join.  It is a move you will never regret.

Be gentle.

Friday, July 20, 2012

Pupdate. Puppies, puppies, puppies everywhere

The pups, who were born on July 3, are getting big so fast.  Plump, active and curious, our whole family is having so much fun watching this crew grow.

Enjoy these pics of our Peruvian pups.

What a face



Mama love

Be gentle.

Thursday, July 19, 2012

The R-word. Not again?

What do we have to do?  Scream it out from the roof tops?  How do we get the message out that the R-word is NOT acceptable?

Here is an example of another public official using offensive words.  Senator Santiago of the Philippines comments of her use of offensive language.

Miriam defends ‘mongoloid’ remark, but vows to watch her words next time

July 18, 2012 4:06pm
Amid criticisms from advocates of persons with disabilities (PWDs), Senator Miriam Defensor-Santiago on Wednesday defended her use of the word “mongoloid” to address her political foes, but vowed to watch her words next time.
Santiago said she cannot be accused of publicly ridiculing PWDs, since she was just addressing corrupt politicians.
“It is unfair and misguided to charge me with intent to violate the law, when my intent was to emphasize my anti-graft stance,” the feisty senator said in a letter to the Members of the Down Syndrome Association of the Philippines, Inc.
On Monday, the group composed of parents of children with Down syndrome, described Santiago as “insensitive” for delivering this remark in a forum last week: “I tell all my enemies who just want to get off me. Stop molesting me, you mongoloids!”
The word “mongoloid” is considered to be a derogatory term for people with Down syndrome.
Santiago also used her constitutional right to freedom of speech to defend her remark.
“The Magna Carta (of PWDs) does not seek to censor the use of the word ‘mongoloid,’ ‘autistic,’ or similar words in any public speech. That would be unconstitutional censorship,” she said.
She added that she just lifted the expression “Stop molesting me, you mongoloids” from a book written by John Kennedy Toole entitled “A Confederacy of Dunces.”
Still, the senator said she decided to “extend the hand of friendship” and promised to watch her words next time.
“Out of goodwill, I will impose self-censorship, by avoiding in future any word that refers to a person with disability,” she said. — Andreo Calonzo/RSJ, GMA News

Come on people.  Think before you speak.

Be gentle.

Wednesday, July 18, 2012

Research or reality? Drug that boosts memory for those with Down Syndrome?

Interesting research is making the news today regarding a medication that boosts memory in those with Down Syndrome.  This study was conducted the University of Colorado investigating the use of memamtine to increase .  This is exciting research of a drug that is used to treat patients with Alzheimer Disease.  Anything that can improve quality of life for my son and others with Down Syndrome is worth a long hard look.  I will continue to follow this research and see if it gets approved for use folk with DS.

What are your thoughts?

From the website Disability Scoop......

Drug Opens Door To Treating Down Syndrome

Text Size  A  A
In what’s being hailed as a major milestone in efforts to treat Down syndrome, researchers say they’ve identified a drug that boosts memory in those with the chromosomal disorder.
The medication memantine — which is currently used to treat Alzheimer’s disease — offered as much as a tenfold memory increase for those with Down syndrome, according to a studypublished Tuesday in the journal Translational Psychiatry.
“Before now there had never been any positive results in attempts to improve cognitive abilities in persons with Down syndrome through medication,” said Alberto Costa of the University of Colorado School of Medicine who led the study. “This is the first time we have been able to move the needle at all and that means improvement is possible.”
For the study, researchers conducted a 16-week trial involving 38 adolescents and young adults with Down syndrome. Half took memantine while the rest were given a placebo. Scientists then measured adaptive and cognitive function in the two groups.
While researchers found no major differences in most areas of functioning, those taking memantine exhibited significant improvement in so-called “verbal episodic memory.” This would include the ability to memorize a long list of words, for example.
“This is a first step in a longer quest to see how we can improve the quality of life for those with Down syndrome,” Costa said of the findings, noting that there are currently no drugs available to improve brain function in those with the disorder.
Despite the promising results, however, Costa warned that people with Down syndrome should not start taking memantine. He said further research is needed using a larger study group and the drug needs to be tested on younger individuals as well.

And from Science Daily.........


Drug Shown to Improve Memory in Those With Down Syndrome

ScienceDaily (July 17, 2012) — Researchers at the University of Colorado School of Medicine have found a drug that boosts memory function in those with Down syndrome, a major milestone in the treatment of this genetic disorder that could significantly improve quality of life.
"Before now there had never been any positive results in attempts to improve cognitive abilities in persons with Down syndrome through medication," said Alberto Costa, MD, Ph.D., who led the four- year study at the CU School of Medicine. "This is the first time we have been able to move the needle at all and that means improvement is possible."
The study was published July 17 in the journal Translational Psychiatry.
Costa, an associate professor of medicine, and his colleagues studied 38 adolescents and young adults with Down syndrome. Half took the drug memantine, used to treat Alzheimer's disease, and the others took a placebo.
Costa's research team hypothesized that memantine, which improved memory in mice with Down syndrome, could increase test scores of young adults with the disorder in the area of spatial and episodic memory, functions associated with the hippocampus region of the brain.
Participants underwent a 16-week course of either memantine or a placebo while scientists compared the adaptive and cognitive function of the two groups.
While they found no major difference between the groups in adaptive and most measures of cognitive ability, researchers discovered that those taking memantine showed significant improvement in verbal episodic memory. One of the lowest functioning individuals in the study saw a ten-fold increase in memory skills.
"People who took the medicine and memorized long lists of words did significantly better than those who took the placebo," said Costa, a neuroscientist specializing in Down syndrome research. "This is a first step in a longer quest to see how we can improve the quality of life for those with Down syndrome."
Currently, there are drugs that treat the symptoms of medical conditions associated with Down syndrome but nothing to improve brain function.
But in 2007 Costa demonstrated that memantine could improve memory in mice with Down syndrome. He then set out to replicate those findings in a human trial of the drug.
"This is an excellent example of translational science," he said. "We took a drug that worked well in mice and we tested it in humans with positive results."
Although the trial was small, the results could have far-reaching implications. Costa said a follow-up study was needed using a larger group of people with Down syndrome. Another important step will be to pursue studies with younger, school-age participants with Down syndrome. They would have more rapidly developing brains and, since they are in school, would be routinely tested so the effects of the drug could be closely monitored. That could take as little as five years.
Researchers also want to know if memantine can ward off the onset of Alzheimer's disease in those with Down syndrome. The two conditions show striking similarities and researchers are actively exploring how they may be linked. Babies born with Down syndrome, for example, often carry the biological markers for Alzheimer's disease.
"Everyone with Down syndrome will develop Alzheimer's disease pathology by their mid-30s," Costa said. "We would like to know if this drug can slow down or even halt the development of that disease in adults with Down syndrome."
Memantine works by normalizing the function of a glutamate receptor in the brain known as the N-methyl-D-aspartate or the NMDA receptor.
"This receptor plays a central role in memory and learning," Costa said.
Given the small size of the study and the need for more research, Costa stressed that people should not start taking memantine for Down syndrome. Although it has proven safe and well-tolerated by the study participants, researchers urge caution, saying more work needs to be done to determine if this is a viable treatment option.
"Our study is a significant and hopeful sign that certain drugs can enhance the intellectual capacity of those with Down syndrome," he said. "For more than 30 years we have been unable to impact cognition in Down syndrome. Now it appears that we may be able to."
Costa has a major stake in improving the lives of those with Down syndrome, the most common cause of intellectual disability. He has a 17-year-old daughter with the condition.
"For me this research is not merely academic," he said. "It's personal."
The CU School of Medicine's work on Down syndrome has resulted in it being chosen as one of nine national testing centers for a new drug manufactured by F. Hoffmann-La Roche LTD aimed at improving memory in adults with Down syndrome. Costa is the principal investigator of the Colorado center.
He will give a lecture about his latest research July 20 in Washington D.C. at the 2012 Annual Meeting & Clinical Symposium of the Down Syndrome Medical Interest Group -- USA. The conference is being held from 1 p.m. to 9 p.m. at the Marriott Wardman Park, 2660 Woodley Rd. NW.
The other researchers in the study included Richard Boada, Ph.D., Christa Hutaff-Lee, Ph.D., David Weitzenkamp, Ph.D., Timothy A. Benke, MD, Ph.D. and Edward J. Goldson, MD.
The trial was funded by Forest Research Institute Investigator Initiated Grant NAM-58. During the course of this study, Costa was also supported in part by grants from the Eunice Kennedy Shriver National Institute of Child Health and Human Development.
"I also am grateful to the Anna and John J. Sie Foundation, the Linda Crnic Institute and the Coleman Institute for Cognitive Disabilities for believing in my research all these years. This work would not have been possible without their support in these harsh economic times," Costa said

Be gentle.

Tuesday, July 17, 2012

Paying it forward to the Down Syndrome Community

When a parent enters the Down Syndrome community, it usually is not by choice.  But usually that parent, or parent to be is welcomed with open, loving arms.  They are gently guided and educated into the community.    Here is a super story about a dad giving back to one of the organizations that helped his family when his beautiful daughter was born.  He is paying it forward to the organization that has helped him.

Please read on to learn more about his DS hero and advocate, Steve Hawley.

Florence man runs for group that helped his family

Photo: Florence man runs for group that helped his family

After about eight years of receiving advice, education, and support from the Massachusetts Down Syndrome Congress, Steve Hawley decided it was time to pay it back, one step at a time for seven miles.
Hawley, 45, will be running in the 40th annual New Balance Falmouth road race Aug. 13 to raise money for the organization that has helped him and his family raise a daughter with Down syndrome.
"How could I not?" Hawley asked.
Hawley said that about a year after his daughter Alice was born he attended his first Down syndrome conference in Worcester and the organization has been helping him, his wife Evie, and Alice's younger brother, Stuart, navigate the intricacies of raising a child with special needs.
Hawley said that the organization has provided information about the disease itself as well as information about diet, what expectations to set and when to back off, how to help Alice, now 9, interact with Stuart, and more.
Hawley said Alice's gross motor skills are poor, so she doesn't come with him during his three-times-a-week training sessions, but is still excited about the upcoming race.
"She understands that Daddy is running," he said.
Hawley said that he's been doing interval training, running ¾ of a mile and walking ¼ mile trying to build up his endurance for the seven-mile race in the middle of August.
"My goal is to finish," he said.
He's been getting advice and training tips from some of his co-workers, three of whom are advanced runners.
The sometimes excessive heat so far this spring and summer have made training more grueling than he expected, but has maintained his schedule and expects to be ready by race day.
Part of that preparation involved a trip to his wife's native Falmouth, to check out the course beforehand to avoid as many surprises as possible.
About a mile into the course is an uphill climb toward a lighthouse and about ¾ of the race's final mile is all uphill, before sloping downward for the race's final stretch.
Hawley said that he expected to raise about $1000, but in his heart was hoping that he might reach $2000, a goal he just surpassed last week with almost a month left to go before race day.
A link to Hawley's donation page can be found on his blog at www.plinth.org/wordpress along with a journal he writes about his experiences with Alice and his family, and advice for others who have loved ones with Down Syndrome.
Local woman honored
Cathy Wanat, of Florence, Dave Slowick, of Huntington, and Tony Kurpaska, of Pelham were among 21 members of the Massachusetts Organization of State Engineers and Scientists honored by Governor Deval Patrick for their efforts during the June 2011 tornadoes that touched down in Western Massachusetts.
The group was presented with the 2012 Manuel Carballo Award for Excellence, the state's highest honor for its employees and named after the former Secretary of Health and Human Services.
The honorees were part of the state's Tornado Response Team, assisting communities with hazardous material clean-up, debris removal, restoring drinking and wastewater infrastructure and helping the Federal Emergency Management Administration to evaluate the scope of the damage.
Annual Bible camp coming up
The greater Northampton Cooperative Vacation Bible School announced its 2012 session will be running from July 23-27.
The school will meet at the Florence Congregational Church at 130 Pine St. from 8:45 a.m. to 12:15 p.m. and is open to children starting at age 4 and up to those entering fifth grade in the fall. The cost is $15 per child.
The church invites those above the age limit to attend the school as students up to senior citizens to consider donating their time as volunteers. For more information, call 413-584-1325.
Bob Dunn writes a regular column about Florence. Submit items to bdunn@gazettenet.com.

Be gentle.