Thursday, September 30, 2010

October Is Almost Here . . . 31 for 21!

Well, what-do-you-know, October is almost here! Wow, 2010 is certainly going by fast!

And, with October comes Down Syndrome Awareness Month. While this may not be publicized everywhere, that's what the awareness for this month is. And, so with that, I'm going to be a part of the 4th Annual 31 for 21 Blog Challenge. The goal is to post one post a day to raise awareness about Down syndrome. It doesn't necessarily have to involve DS, but at least to post every day. And, if you know this blog, then most posts will have at least something to do with Down syndrome, because it's just a part of our life.

So, with this first post, I leave you all with something:

Since I may need some topic ideas for the month, leave any questions or comments that you would find an answer interesting to on this post. Any questions or any comments . . . they can be....

-Directly related to DS
-An easy question that you're just curious what our opinion is on it
-A speech related question
-Therapy related question
-Sibling related question
-And anything else you may think of!

Hope to have at least some questions from you all to add to the 31 for 21 blog-a-day challenge!


Wednesday, September 29, 2010

A Sibling Perspective

This is a sweet article written by a girl who has a brother with DS.

I can totally relate (and agree!) to Jenni's last statement: "So what is it like to have a sibling with Down Syndrome? It is an honor."

Yes, it is an honor and blessing to be able to have a sibling with Down syndrome. Osiyyah enriches my life and my families life so much. Not a day goes by where he doesn't put a smile on my face or make me laugh about something. And there are still days that go by that he totally amazes me on how much he really understands and can do (it's so much!).

I will forever be thankful that God blessed our family with a child with Down syndrome. And I hope that someday He will bless us with another one (or more) ;).

by Jenni Newbury

I don't remember life before Jason was born. I imagine I enjoyed my two years as an only child, but I simply have no recollection of life without him. The memories I do have include:pulling Jason across our tile floor to hear him giggle, sitting together on the couch as we went on an imaginary trip with my dolls, and running alongside him the very first time he rode a two-wheel bicycle. There are other memories as well: visiting doctor's offices, watching therapists come in and out of our house, and constantly translating Jason's developing speech to others. The memories meld together, not one more specific than another, not one less "normal" than another.

The first time I remember defining Down Syndrome was when my parents and I gave a presentation to Jason's fourth grade class. We knew his peers were asking questions and felt if we could explain some details, they would be more accepting as they got older. They were, at times - but not always. As a big sister I defended my brother when others took advantage of him or teased him. Many times Jason didn't even notice, but I felt it was my responsibility to guard his dignity.

As we grew up, I worked to create new ways for Jason to be included. In high school I created a club that hosted social opportunities for students with and without disabilities. I co-founded Camp PALS, a weeklong sleep away camp for young adults with Down Syndrome. In college, I founded Princeton Disability Awareness and hosted an annual Down Syndrome Conference for children with Down Syndrome, their siblings and families. Through each of these programs, I worked to bring others into the world where I lived, and provide them with the experience of knowing someone with Down Syndrome.

For many who have never met someone with Down Syndrome, it might be difficult to imagine how much can be gained from someone with a disability, someone who--by society's standards--is lacking. People with Down Syndrome are burdened by many stereotypes--most degrading, if not offensive.  None of them come to mind when I think Jason. Through Jason, I have learned what it means to be strong, courageous, sincere, and honest. Jason has shown me how to forgive others, how to experience joy in the smallest of moments, and how to love radically.

After graduating Princeton, I found a new home working for Special Olympics. Their mission challenges and inspires me every day, but the real honor is working for an organization that has directly enhanced Jason's life. Beyond sport, which has provided Jason with many opportunities, Special Olympics has taught him about advocacy.

Over the past two years, Jason has developed a new hero--his name is Tim Shriver. Although not completely lacking in superhuman powers, Tim became Jason's hero for a simple reason: he gave Jason a voice. When Jason spoke, Tim listened. When Jason attended a meeting, Tim asked for his insight. When Jason was by himself, Tim joined him. Through this simple acceptance, these acts of inclusion, and this demonstration that he valued Jason, Tim transformed Jason's world and empowered him to begin reaching his full potential. Tim represents only a small example of the power that a movement like Special Olympics brings with it. A power that, to no one's surprise, started with the passion and determination of a sibling.

So why does this matter? As a sibling of someone with Down Syndrome, the question I am asked most often is the following: Would you change it if you could? If you could separate Jason from his diagnosis of Down Syndrome, would you take away the disability?

Looking back, I consider the many ways I've worked to make Jason included, to have people see his value. The common theme is that I've never once considered changing Jason. I try to give others new experiences, transform people's misconceptions and re-direct their expectations. Like a recent Special Olympics advertisement I read, my goal has been to make others rethink, to consider "truth without judgment, love without boundaries, respect without requirements." If I am eliminating a disability, the disability is not in Jason--it's in the world.

So what is it like to have a sibling with Down Syndrome? It is an honor. Jason's life is nothing short of a gift, and his presence in mine is one of God's greatest blessings.

(Jenni Newbury currently resides in Washington, DC where she works for Special Olympics Project UNIFY as the Curriculum and Education Resource Manager. Most of her free time is spent working on the growth and expansion of Camp PALS. Since Jenni graduated from Princeton and left home in New Jersey, she and Jason have been adjusting to the new distance between them - but she is hoping to eventually convince Jason to move down to DC.)


Monday, September 27, 2010

People with Down Syndrome In Ireland

This came through a DS listserv I'm on and thought I'd share it here :).


The condition was recently highlighted when journalist Brendan O'Connor wrote so movingly about his new baby daughter Mary. Here Susan Daly talks to those who have grown up with it, but refuse to be defined by it

By Susan Daly
Wednesday September 22 2010

When Declan Murphy moved away from his home in Waterford to go to Trinity College in Dublin, he knew his mum was worried about him. Declan (33) has Down Syndrome, but that may not have been the entire root of mum's concern.

"Well, I am the youngest of the family," says Declan. "I think she missed me."

Declan is part of an independent-minded, articulate generation of Irish people who have grown up with Down Syndrome but are refusing to be defined by it.

"Big into politics," he is one of a group of young adults with Down Syndrome who have been lobbying politicians as part of their 'My Opinion, My Vote' campaign to reform national policies that would help people with DS to attain their work, life and educational goals.

"I asked them for easy-to-read information in simple language and large fonts so we can learn about our rights," says Declan. "We are Irish citizens, yet we aren't able to get the same rights as everyone else."

May Gannon, counsellor and drama-therapist with Down Syndrome Ireland, says that when Declan and other members of the group put their views to politicians from every party in Dublin last March, the legislators were "blown away" by their presentation.

"What they had were people with Down Syndrome telling them that when they opened the door to politicians canvassing, the politicians would say 'Is your mum and dad in?' rather than looking for their vote."

Orla Hannon, a 23-year-old woman with Down Syndrome from Sixmilebridge in Co Clare, says she felt "strong and confident" when she gave the same presentation in Budapest and in Rome.

"We want to empower people with disability to participate in the political process," she says. "We want the right to get proper education, and get jobs."

Orla is devoted to books -- she reads every night -- and would like to work in a library. Her international political canvassing has given her a taste for travel. "I wouldn't mind going to Denmark," she says.

In essence, these are adults with dreams, ambitions and opinions. May Gannon's son Michael, for example, says that although his outgoing personality means he feels people see beyond his Down Syndrome, that equality must become the norm.

"People need to look at the person, not the disability," he says.

When journalist and broadcaster Brendan O'Connor wrote movingly about the birth of his new baby daughter Mary -- who has Down Syndrome -- in the Sunday Independent more than a week ago, he made special note of a piece of advice given to himself and his wife Sarah to "remember always that Mary is our baby, one half of each of us, and not a member of some tribe of Down's people, a membership that sets her apart from us".

This is absolutely vital for everyone to understand -- not just those close to someone with DS, says May.

"People with Down Syndrome are as different from each other as the families they come from," she says. "As to their ability level -- they sometimes live up or down to the expectations of people around them."

Pat Dorgan has more than lived up to the expectations of his family. The 46-year-old from Cork won two medals for Ireland in table tennis at the 2007 Special Olympics World Games in China and subsequently featured in a national poster campaign for the sport. His brother, the poet Theo Dorgan, composed a poem called My Brother for a pre-Games gala.

His sister Angela calls Pat "the glue that holds the family together". Pat and those high-achieving adults like him are changing the perception of what a person with Down Syndrome can do. It's a welcome progression, says Angela, from the condescension of old.

"A phrase that used to drive us mad as kids was, 'Ah sure, God help us'," she recalls. "People would ask us if he took sugar in his tea. We'd say: 'Why don't you ask him?'"

Similarly, 19-year-old Roisin de Burca from Connemara attracted positive attention last year when she became one of the few people with Down Syndrome to complete a full Leaving Certificate -- and she did all her subjects through Irish. She then completed a FETAC course in Business Administration at Galway IT.

"I felt proud of myself, something I can accomplish in life, something that belongs to me alone instead of the family," Roisin said last June after she won Bank of Scotland student of the year.

"We have moved from a time when people considered that a person with Down Syndrome was ineducable," says May.

"Research tells us that there is nothing that can be delivered in a special school that can't be considered in a mainstream school, given the proper supports."

Getting access to this support -- special-needs assistants, access to visual learning materials, speech therapy etc -- is a cause of worry, however.

Just this month, Andrew Boyle, whose daughter Zoe (7) has Down Syndrome, challenged Education Minister Mary Coughlan on the withdrawal of Zoe's special-needs assistance hours from 25 to five a week.

Pat Clarke, CEO of Down Syndrome Ireland, says that most of the charity's monies comes from fundraising initiatives like next month's Honey Days.

As better medical care ensures that the average life expectancy of a person with Down Syndrome has increased dramatically, it has thrown up new long-term challenges in relation to accommodation, employment and living.

"Our expectations and the expectations of our children have moved on," says Pat, whose son David (29) has Down Syndrome. "David's out there in the community, he's an excellent swimmer and has won a couple of medals for Ireland, he's at Dundalk IT three days a week and works at Tesco. He has a blue belt in Taekwondo. He could live independently. We're in the process of organising a housing association in our local area in Drogheda to do it."

The fact that the one in every 600 babies born in Ireland with Down Syndrome can now expect an average life expectancy of anything between 55 to 65/70 years can be cheering and sobering at the same time.

Peter Gaw, founder of the Down Syndrome Centre, says: "You get the initial shock of the diagnosis and within hours you're already thinking, 'What's going to happen when I'm not there?'"

Peter's two youngest children, daughter Tara (11) and son Harrison (9), were both born with Down Syndrome. It is important, he thinks, that parents of children with Down Syndrome are given hope and told that "it's not all doom and gloom".

"You try to get back to as normal a life as you can," says Peter. "My older two children are really good with the two young ones. We wouldn't change our family."

The Down Syndrome Centre now funds the country's first Down Syndrome liaison nurse, who works out of the National Children's Hospital in Tallaght. She reassures and informs parents when their baby is born with the condition, helping them get through what Sheila Campbell, Chief Executive of the centre, calls the "miasma" of confusion and hurt.

Beyond that, integration into mainstream schools is crucial, says May Gannon: "We might never have known a person with Down Syndrome growing up, whereas now the younger generation will tell you about Mary or Joe 'who is in my class in school and loves A, B and C'."

Down Syndrome Ireland ( has 24 branches across the country. Their Boyne Valley Honey Days Campaign for October has pots of honey for sale for €2. is a wonderful resource for people with DS and their families. They have also launched the first online charity dress shop with


Saturday, September 25, 2010

CTR in The Ukraine

Connecting the Rainbow is on their first trip to the Ukraine to establish connections with families, doctors, therapists, and orphanages in various regions of Ukraine.

It was just a short trip (a few days), but you can see the details of their trip at the Connecting The Rainbow blog.

Shelley (adopted kids through RR from Ukraine, Serbia & Bulgaria) & Meredith (adopted 2 through RR from Ukraine in 2008 & is in the process of adopting another one from EE) went on this trip together. One of the main reasons they went was because of the DownsEd conference that was held in Kiev, Ukraine.

But, since they were on this trip, they were able to visit several orphanages (including the one Meredith's 2 kiddos came from), a therapy center that recently opened, a maternity hospital and more.

Hopefully this will help open the gateway for more connections in Ukraine and bring hope to families there, so that someday orphanages and institutions will be a thing of the past.


Thursday, September 23, 2010

Researchers Find Link Between AD & Cataracts

This came through the DSTNI listserv which I'm on and I found it very fascinating. The Cataract problem & tendency to AD has been known for a long time. And the fact that there seems to be increased Amyloid-Beta protein in DS has also been known for a long time. So, to see the connection between the two is very interesting.

ScienceDaily (May 21, 2010) — A team of researchers has discovered that the protein that forms plaques in the brain in Alzheimer's disease also accumulates in the eyes of people with Down syndrome. The new findings in Down syndrome show that the toxic protein, known as amyloid-β, that causes Alzheimer's pathology in the brain also leads to distinctive cataracts in the eyes. The discovery is leading the researchers to develop an innovative eye test for early detection of Alzheimer's pathology in both disorders.

The research, led by Lee E. Goldstein, M.D., Ph.D., associate professor at Boston University School of Medicine and the Boston University Alzheimer's Disease Center, and Juliet A. Moncaster, Ph.D., associate director of the Molecular Aging & Development Laboratory, also at Boston University, was presented at the annual meeting of the Association for Research in Vision and Ophthalmology in Fort Lauderdale, Florida and reported in the May 20 issue of PLoS ONE. The research included investigators at the Brigham & Women's Hospital; Massachusetts Eye and Ear Infirmary; Massachusetts General Hospital; Harvard Medical School; Rush University Medical Center; Children's Hospital Boston, and the University of Washington, Seattle.

"People with Down syndrome develop symptoms of Alzheimer's-type dementia often by the age of 30," said Goldstein, senior corresponding author on the PLoS One article. "This is because they have an extra copy of a key Alzheimer's gene that leads to increased amyloid-β accumulation in the brain. We discovered that this same protein starts to accumulate very early in the lens of the eye, even in children, " explained Goldstein.

"The lens provides a window to the brain," said Moncaster, co-lead author of the study. "The lens can't clear protein deposits the way the brain does. Our findings show that the same amyloid-β protein that aggregates in the brain also accumulates in the lens and leads to these unusual cataracts in Down syndrome."

"The results are striking," added David G. Hunter, M.D., Ph.D., Ophthalmologist-in-Chief at Children's Hospital Boston and Vice Chairman of the Department of Ophthalmology at Harvard Medical School. "We have known that these cataracts are prevalent in people with Down syndrome and are sometimes seen at birth, but we never knew how they were related to the disorder -- now we know," said Hunter. "These distinctive cataracts appear only in people with advanced Alzheimer's disease and much earlier in Down syndrome."

According to the National Down Syndrome Society and the National Institute of Child Health & Development, Down syndrome is the most common chromosomal disorder and the leading genetic cause of intellectual disability. In the US, one of every 800 newborns and more than 400,000 people have Down syndrome. Although the disease is incurable, life expectancy for people living with Down syndrome has increased dramatically in recent decades -- from 25 in 1983 to 60 today.

"We are developing an eye scanner to measure amyloid-β in the lens," said Goldstein. "This approach may provide a way for early detection and monitoring of related pathology in the brain. Effective treatments for the brain disease in Down syndrome and Alzheimer's disease are on the horizon, and early detection is the key for successful intervention," he said. "The path to effective treatment is what drives our research."

Lead co-authors on the PLoS ONE publication are Juliet Moncaster (Boston University School of Medicine), Roberto Pineda (Massachusetts Eye and Ear Infirmary, Harvard Medical School), and Robert Moir (Massachusetts General Hospital, Harvard Medical School). Co-authors of the study are Suqian Lu, Mark Burton, Joy Ghosh and Anca Mocofanescu and Rebecca Folkerth (Brigham & Women's Hospital, Harvard Medical School), Maria Ericsson (Harvard Medical School), Stephanie Soscia and Rudolph Tanzi (Massachusetts General Hospital, Harvard Medical School), Richard Robb and David Hunter (Children's Hospital Boston, Harvard Medical School), Jerome Kuszak (Rush University Medical Center), and John Clark (University of Washington, Seattle). The corresponding author of the study is Lee Goldstein (Boston University School of Medicine and Boston University Alzheimer's Disease Center).

The five-year research effort was supported by the National Institutes of Health (National Institute of General Medical Sciences, National Institute on Aging), American Federation for Aging Research, Alzheimer's Association, American Health Assistance Foundation, Cure Alzheimer's Fund, National Disease Registry Interchange, Sun Health Research Institute, Florida Lion's Eye Bank, and an anonymous foundation. The investigators disclosed that at the time of the study Drs. Tanzi and Goldstein were scientific consultants to Neuroptix Corporation and with Dr. Moir to Covance, Inc. The authors reported no commercial research funding or other competing interests.

Journal Reference:

   1. Juliet A. Moncaster, Roberto Pineda, Robert D. Moir, Suqian Lu, Mark A. Burton, Joy G. Ghosh, Maria Ericsson, Stephanie J. Soscia, Anca Mocofanescu, Rebecca D. Folkerth, Richard M. Robb, Jer R. Kuszak, John I. Clark, Rudolph E. Tanzi, David G. Hunter, Lee E. Goldstein. Alzheimer's Disease Amyloid-β Links Lens and Brain Pathology in Down Syndrome. PLoS ONE, 2010; DOI: 10.1371/journal.pone.0010659


Tuesday, September 21, 2010

Reece's Rainbow Canada

Reece's Rainbow has now opened up a program for families in Canada to adopt "through" them. The director for RRC is Shannon Stepanek, instead of Andrea Roberts who is the director for RR. Hopefully this will help a lot more orphans find families!

Click here to go to the RRC website.


Monday, September 13, 2010

Temporary Hiatus

For the next 2 weeks, I'll be on a kind of temporary hiatus from blogging. I'll still try to post something here and there, but if I don't get anything posted, don't be surprised. My grandmother is arriving from out of state tomorrow and she'll be here 2 weeks, so we'll be busy. This next week is already packed full and it's just started ... with everything from a DSAT/Buddy walk meeting to renting out the roller skating rink for my sister's birthday!

So, with that, I'll leave you with a picture from Oklahoma Country :) ~

BTW, if anyone has any questions or whatever, feel free to pop me an email. I'll definitely be able to answer emails still!


Friday, September 10, 2010

Niemann Pick Type-C & Proventigen

Chris Hempel, the mother of twin girls with Niemann Pick Type-C Disease (NPC), emailed to tell me about Proventigen. I'll give a little background first.

Chris is who we originally found out about Longvida Curcumin from. I'm so thankful we were able to run across their website and find it as it has helped so many in the DS community.

The Hempel's were using Longvida Curcumin for a slightly different reason, for their girls with NPC. NPC is also called Childhood Alzheimer's. It's a horrible, rare disease where children slowly begin to lose the ability to walk, talk, eat and live a normal life. These children die very young too and that's why it's called Childhood Alzheimer's disease. NPC is very rare and therefore there is no cure for it. Addi & Cassi's family do a lot of research and try all kinds of supplements and potential cures, so hopefully something will help these girls and therefore help others with NPC.

NPC is a genetic disease and is caused by accumulation (excess) of Cholesterol in almost every place of the child's body, but the most damaging part is the accumulation in the brain.

There are so many similarities between NPC and Alzheimer's Disease. And because there are so many similarities between AD and Down syndrome, it's very curious to know whether cholesterol plays a role in DS or whether families can find information through DS research for their kids with NPC. Unfortunately, not very much has been researched regarding cholesterol and DS. Although, there is something up with it, as cholesterol is typically high when bloodwork is done in DS. But, then again, Down syndrome is such a multi-faceted, complicated syndrome and there are so many factors that contribute to the syndrome, scientists have a lot of study!

So, back to Proventigen (click here to see it). Proventigen is a new product designed to support brain health. It contains Longvida Curcumin, Pomegranate Extract, N-Acetyl-Cysteine, Vit. B6, Folic Acid & Vit. B12.

It sounds like a very promising, good product. But . . . . . there's one problem that makes me slow to use it or recommend it for DS. It contains N-Acetyl-Cysteine (NAC), which has been seen to cause leaky gut and increased oxidative stress in DS. Neither of which are good things, especially when GI issues and high oxidative stress is already an issue in DS.

If it was all the other ingredients without NAC, I'd want to use it in a heartbeat! The combination of Longvida Curcumin & Pomegranate sound very hopeful. Both of those are excellent for promoting brain health! But, for now, unless other research shows up, we will pass on using Proventigen because of the concern of NAC.


Thursday, September 9, 2010

So Sad.

This little girl had Cerebral Palsy in Eastern Europe.

Because of that, she was left in an orphanage . .  .
...To be hidden away from the world and from a family
...To be taken care of just enough to live, but with minimal care, love & nutrition
...To spend her days in a crib

When she outgrew her time at the orphanage, she was transferred to a horrible mental institution in Eastern Europe.

Simply because she had Cerebral Palsy. 

According to the mindset of many people in EE, she wasn't fit to be a part of society. Her life was destined to be hidden away. Tucked away in a crib in a dark orphanage and then quietly transferred to a place where many children die very shortly after coming.

And that's what happened to this little girl.

Just a few months after arriving at this horrible mental institution, she passed away. So sad.

Her days were spent hidden away from the eyes of the world, so that no one would have to deal with this child who may be a "burden to society."

But, there was One who knew all her days from the time she was born and that is God. I praise God that He will come soon and bring true justice to all.


Wednesday, September 8, 2010

10 percent off of Down Syndrome: What You CAN Do

I received a coupon today from LuLu, the company which publishes our book for 10% off. You can order our book from the link right at the top of this blog, or by clicking here.

So, if anyone wants to order an eBook or print copy of our book, Down Syndrome: What You CAN Do, you can get 10% off by entering the coupon code below. It's good until Septembe 30, 2010. Pass onto anyone you know who may be interested :)!

Coupon Code to enter at checkout: AUTUMN

If you've bought our book, we'd love to hear. So, leave us a comment and let us know how it has helped or what you think of it :)!


Adoption Homecoming Video: This is Home

John & Charissa Urban (you can view their blog here) live just a few hours from us here in Oklahoma. A couple years ago they adopted Ava (who has Down syndrome) from the Ukraine. She was 4 years old and the size of an infant. She has since made tremendous progress.

This summer, the Urbans went back to the Ukraine to adopt Joseph, another little boy with Down syndrome and also Zoya, a little girl with other special needs.

Charissa put together a slideshow of Joseph's & Zoya's adoption. I thought it was very sweet and figured you all would enjoy it too.


Tuesday, September 7, 2010

Pujols Family Foundation

This came through one of the DS listservs I'm on and I thought I'd share it here. Albert Pujols, a slugger for the St. Louis Cardinals has a daughter with Down syndrome and he has a foundation to help those with Down syndrome.

Cardinals slugger Albert Pujols said he was honored and humbled standing Saturday in front of a mass of people larger than any baseball crowd to receive an award for his success off the field.

After hearing from such notables as former Alaska Gov. Sarah Palin and television personality Glenn Beck, a crowd that stretched from the Lincoln Memorial to the Washington Monument cheered when Pujols was presented with an honor called the Hope Award.

"I want to thank God for giving me this platform as a baseball player," Pujols said to the crowd at the "Restoring Honor" rally, organized by Beck.

Pujols was introduced by Cardinals manager Tony La Russa, who described his first baseman as "a real-life hero."

"Wow, what a view," La Russa said as he surveyed the crowd.

Organizers had a permit for 300,000 people. The National Park Service stopped making official crowd estimates more than a decade ago after being accused of undercounting the Million Man March.

La Russa, wearing an untucked dress shirt, said the Hope Award represented honesty, integrity and trust in life, both personally and professionally. He described Pujols' nearly 10-year career as "historic" in the 120 years of Major League Baseball.

"His baseball exploits are not the reason that he is the Hope Award recipient," La Russa said. "What separates Albert is his total commitment to his life in and out of baseball, his commitment to his family ... his commitment to his faith and his tireless in- and out-of-season commitment to community."

La Russa added: "If you're in the St. Louis area, you will see Albert on days off, evenings off, throughout the very tough six-month season, tirelessly being involved with causes, especially their own Pujols Family Foundation."

After receiving his bronze medal, Pujols thanked his wife, Deidre, who was backstage, and those who contribute to his foundation, which helps people with Down syndrome. The first baseman also made reference to his work in the Dominican Republic.

"We can't forget where we came from," said Pujols, who was clad in black.

"As long as I'm alive, I'm going to continue to do the best I can to represent Jesus Christ," he said in one of several references to his faith.

Beck, a Fox News host, described the event he organized as nonpolitical.

St. Louisans in the crowd said they had journeyed to Washington in hopes of sending a message to fellow Americans about what they regard as perilous times.

"This is to wake up the people. The politicians don't listen," said Gerard Barron, 54, who owns a construction company in Ballwin.

Tom Gates, 64, a retired banker from Chesterfield, said his disgust at the government's deficit spending had prompted him to make the trip.

"You can't spend what you don't have," he said.

John Schneiderhahn, who owns two tropical fish stores in the St. Louis area, said he was downright frightened by what he saw in the local economy.

"I'm scared that where we're going is not a good place. There is no good ending to this story unless we make a U-turn," he said.

Critics gather here

About 30 people gathered Saturday near the Stan Musial statue outside Busch Stadium to decry La Russa's and Pujols' participation in the Washington rally. The protest here was organized by Metropolitan Organizations Strengthening and Empowering Society.

"I'm fed up that politics has to invade every aspect of our lives," said Chris Andoe, a Cardinals fan who carried several signs, including one that said "I had a dream baseball wasn't political," a reference to the Rev. Dr. Martin Luther King Jr.'s speech.

Ken McKoy, the executive director of the society, said it was hypocritical for anyone from the Cardinals organization to attend a rally with themes opposing government intervention when tax dollars helped fund construction of the stadium, an act he called "corporate welfare."

St. Louis Alderman Terry Kennedy and Normandy Mayor Patrick Green also spoke at the rally.

Leah Thorsen of the Post-Dispatch contributed to this report.

(Pujols Family Foundation website can be seen here)


New Research Regarding Alzheimer's & DS

A recent study was published in regards to the Amyloid Beta Protein and it's role in both Alzheimer's disease and Down syndrome. This protein is overexpressed in DS and is also responsible for the plaques and tangles which forms in AD patients.

This is one hope of Longvida Curcumin, to break up the plaques and tangles caused by APP. Curcumin is known to break up those plaques and tangles, but from what it appears it needs to be a very high dose. So, that is still in the works.

But what this study researched was what enzyme causes APP to produce plaques and tangles and a means to control that. While no drug or therapy that is safe has been found yet, this is non-the-less very interesting and noteworthy.

To see the abstract of the study, click here.

By Dr Cesar Chelala /New York

A finding by a team of Rockefeller University scientists led by Dr Paul Greengard, a Nobel laureate, throws light on an important feature of Alzheimer’s disease. The finding may result in better treatment for both this disease and for patients with Down syndrome. Better treatment for both diseases could improve the lives of millions of people worldwide.

Patients with both Alzheimer’s disease and with Down syndrome have an accumulation of a protein called beta-amyloid in their brains. The accumulation of this substance is believed to initiate the pathological changes (among them the plaque that builds up in the brains of people with Alzheimer’s) leading to brain dysfunction, cell death and dementia. The hallmark lesions (tangles and plaques) of Alzheimer’s disease are also present in all adults with Down syndrome after the age of 40, suggesting a shared genetic susceptibility to both.

Although it wasn’t known if beta-amyloid played a role in mental retardation, particularly in Down syndrome patients, the Rockefeller scientists worked under the hypothesis that it could have an effect. If this were true, they reasoned, lowering levels of beta-amyloid could result in an improvement of symptoms.

Dr Greengard and his collaborators found an enzyme (enzymes are proteins that speed up chemical reactions) that stimulates the production of beta-amyloid. In the new study, led by Gen He, a research associate in Greengard’s lab, the researchers showed that the enzyme stimulates production of beta-amyloid in cell lines, and that reducing it brings down beta-amyloid. That enzyme could thus be an important target for the development of new drugs against Alzheimer’s disease.

To test the hypothesis that increased beta-amyloid could be responsible for the symptoms of mental retardation, Dr Greengard and his colleagues tested a compound which is known to suppress the production of beta-amyloid in a mouse model with Down syndrome. Mice treated with this compound not only had a rapid reduction of beta-amyloid but also showed a significant improvement in their ability to learn to navigate a water maze. They were also able show some other signs of improved mental functioning. The control group used did not show any of these effects.

In another set of experiments, Dr Greengard and his colleagues developed a strain of mice that had a gene for Alzheimer’s. When they blocked the gene for the enzyme that increases the production of beta-amyloid, the animals didn’t develop plaque in their brains.

Reality in science is always more complex than anticipated, though. The compounds used to lower the levels of beta-amyloid have generally some serious toxic side effects. Only one of these compounds, the anti-cancer drug Gleevec, used to treat a rare form of leukaemia, was able to lower beta-amyloid without toxic side effects. The problem with Gleevec, though, is that it doesn’t remain in the brain long enough to treat either Alzheimer’s disease or Down syndrome. The importance of Gleevec, according to Dr Greengard, is that it may provide a model for developing new anti-beta-amyloid drugs.

The discovery of a new target for these drugs is a new and significant development in the treatment of Alzheimer’s disease and Down syndrome, both of which affect millions of people worldwide.  Only in the US, it is estimated that approximately 4mn Americans are affected by Alzheimer’s disease.

In what until recently had been an almost hopeless situation, the discoveries of Dr Paul Greengard and his colleagues shed a new light into what had been until now a rather dismal situation.


Monday, September 6, 2010

Life On The Ranch: The Blue Hole

Yesterday was spent going swimming with friends at a local swimming hole that the locals refer to as "The Blue Hole." It's a nice little swimming spot and perfect for the little kids, with some shallow spots, but also nice for those who know how to swim, with a few deep spots.

Although the water is getting pretty cool and the weather is cooling down, it was still a very nice swim. It'll probably be one of the last swimming times this year.


Osiyyah throwing a football to someone in the water

Warming up on the shore eating some yummy French Vanilla Popcorn.

After swimming was done and animal chores were done, we headed over to the neighbor's for dinner and to watch a soccer game.

So, there's a recap of our nice, relaxing Labor Day Sunday :). Hope you all had a good Labor Day weekend!


Friday, September 3, 2010

What to Buy From TalkTools?

Brandie left a comment on this post, asking for any recommendations on DVD's from TalkTools. Although I have posted a couple times in regards to items and videos we use from Talk Tools (see here and here), I thought it would be good to devote a whole post to my recommendations for DVD's from TalkTools.

DVD ~ As A Parent: What Can I Do?
*Although, I have never watched this DVD, I have heard very good things about it. And even though it is not very expensive, it would probably be an easy way to start. But, I still think some of the more complex DVDs are extremely beneficial.

So, onto those DVD's:

DVD ~ Down Syndrome Population
*This is an excellent 6 hour series. I highly recommend it.

DVD ~ Jaw Assessment & Treatment
*This is a great topic and something that needs to be understood for those of us involved with someone with DS. I read the book on this and it made so. much. sense.

DVD ~ Pre-Feeding/Organizing The Mouth Set
"Pre-Feeding: Preparing the Oral Musculature," and "Organizing the Mouth for Feeding and Speech"
*I watched these DVDs a few years ago and they are very helpful!
**Individual DVDs of these videos: Pre-Feeding by Lori Overland & Organizing the Mouth by Lori Overland.

DVD ~ Bubbles As Therapy Tools
*Very informative video. Makes understanding the Bubble therapy much easier.

DVD ~ Horns as Therapy Tools
*Very informative video. Makes understanding the Horn therapy much easier.

DVD ~ Straws as Therapy Tools
*Very informative video. Makes understanding the Straw therapy much easier.

Or, better yet, you could buy a 5 DVD set (which is what we did a few years ago) that includes:
Bubbles/Horns/Straws as Therapy Tools, Pre-Feeding & Organizing the Mouth by Lori Overland. This DVD set also includes kits for the Bubbles/Horns/Straws. You can see that DVD set at this link.

If you're only going to get two DVD sets, I would suggest the 5 DVD set right above and the Down Syndrome Population 6 hour series. That'll give you 11 hours worth of DVDs to watch and you should be understanding things a lot better by the end :).

Hope this helps!


Wednesday, September 1, 2010

TalkTools Sale!

I received an email the other day for a sale that TalkTools is doing. Having bought their videos throughout the years, I know they can be pretty expensive. Hopefully this discount will be of use to someone!

"Our MOST popular promotion is back!

RECEIVE 40% OFF ALL EDUCATIONAL DVD's!!! --  Prices as low as $39.00!

**Our Self-study DVDs are among the most accessible and convenient means to acquire continuing education units (CEUs), and upon completion ITI will make sure the required documents are filed on time and correctly with either ASHA or AOTA. Additionally, the presence of full-length one to two day workshops in your multimedia library will allow you and your colleagues to review the material whenever, and at whatever pace, you like**

PLEASE NOTE: There is only 1 MONTH left to enjoy this amazing offer. Good through September 30, 2010. "

Visit TalkTools website at


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