Thinking of starting this back up

Faith the Science Fair Winner

a friend posted the following 'brag' to the DownSyndromeInfoExchange listserv:
Faith won honorable mention at the county wide science fair!!

First she had to win for her class, then the science teacher chose the 4th grade school wide winner, then her project went to the mall for county wide judging, there are 12 elementary schools.

She aptly named her project "Ice Age: The Meltdown", of course everything is a movie to her! She melted ice in no water, salt water, and plain water. She helped type up the board and cut them apart and glued them on. Plain water melted the fastest. Big sister, Joy and I resisted perfecting the project board!

She also did so well at the big awards ceremony. It was in the middle school cafeteria with lots of people. The crowds and noise are very hard for her, so she wore her headphones. When her name was called she walked by herself from the back of the room to the stage at the front. She stood up there with the other kids and came back to her seat when dismissed.

We are so very proud of her! Now when asked what she wants to be when she grows up, she says "a scientist!"
posted by KathyR


This is an action alert from the NDSS, but anyone can call in…it is not just for people w/down syndrome..this bill has huge implications for individuals with disabilities and their families…it was just introduced last week. Please call your members of Congress..pass the message on to family, friends, neighbors, your church, etc..anyone can call in.
Call Your Members of Congress Today! Take Action!

Ask Them to Cosponsor the Achieving a Better Life Experience Act (ABLE) of 2009 (S 493/HR 1205)

The Achieving a Better Life Experience Act (ABLE) of 2009 (S 493/HR 1205) was introduced last week in both the Senate and House. The ABLE Act will give individuals with Down syndrome 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.

The ABLE Act will allow individuals with Down syndrome to create a disability savings account that would accrue interest tax-free. The account could fund a variety of essential expenses for the individual, including medical and dental care, education, community based supports, employment training, assistive technology, housing, and transportation. The legislation prohibits amounts held by, or paid or distributed from any ABLE accounts from being treated as income or assets when determining eligibility for benefits provide by any Federal benefits program.

Asset development is one step towards improved economic self-sufficiency, and the legislation's focus on encouraging asset development will greatly incentivize people with disabilities to live more productive lives through earning and saving assets.

Talking Points to Call Your Senators and Representative:

I am calling to ask my [Senator/Representative] to cosponsor the Achieving a Better Life Experience Act (ABLE) of 2009 (S 493/HR 1205) led by Senators Casey (D-PA), Hatch (R-UT), Dodd (D-CT), Kennedy (D-MA), Brownback (R-KS), and Burr (R-NC) and Representatives Crenshaw (R-FL), Meek (D-FL), Kennedy (D-RI), and McMorris Rodgers (R-WA).

The legislation encourages persons with disabilities to save in order to live an independent and meaningful life while reducing their dependency on public benefits.

This legislation allows for the establishment of tax-exempt financial security accounts for individuals with disabilities to pay certain expenses, including: medical and dental care, education, community based supports, employment training, assistive technology, housing, and transportation.

The legislation prohibits amounts held by, or paid or distributed from any ABLE accounts from being treated as income or assets when determining eligibility for benefits provide by any Federal benefits program.

If your boss is interested in signing on as a cosponsor, please contact:
• o Bryn McDonough (202-224-6324) in Senator Robert Casey's office
• o Dustin Krasny (202-225-2501) in Representative Ander Crenshaw's office

If you are not on the NDSS action alert email list and would like to receive these alerts and information bulletins, please subscribe at:

National Down Syndrome Society
666 Broadway, New York, NY 10012
Phone: (800) 221-4602; Fax: (212) 979-2873
Web site:

NDSS National Policy Center
5505 Connecticut Avenue, N.W. # 239
Washington, DC 20015-2601
Phone: (800) 743-5657

Jon and Company
is a specialty clothing company that was started by Annette Liike, mother of Jon (6), who has Down syndrome. Annette was finding it difficult to find clothing for her son that fit well and encouraged independence in dressing, while remaining stylish. The clothing that was easy to put on was usually not very trend conscious, and the clothing that was trendy, was not very easy to put on. Annette realized that she was not alone, so she started her search for someone who could help her design a clothing line for individuals with Down syndrome, which promotes their individual dressing needs and upholds the styles of today. Annette discovered neighbor and friend Yvette Quigley, had a background in costume design and was very interested in designing garments to help kids become more independent. Both women quickly got to work on a clothing line that offers functional and affordable clothing made to fit people with Down syndrome and other disabilities. They offer closures that present ease in dressing for those who present challenges in dexterity, yet have considered a range of abilities by offering many choices on the clothing such as Velcro, magnetic snaps, elastic and buttons. To ensure the quality of our garments we have tested them on Jon our six year old model. In addition to his wearing the items to play they have been machine washed many times making sure that the garments will endure the stress that children just by their nature put on clothing. The result is affordable, stylish clothing that fits well and lasts until they outgrow them. Any questions that you have can be answered by calling Jon and Company at 248-624-7800. Special requests and custom orders are also available.

Two Articles...what a contrast in attitudes

Minette Marrin has just written one of the most condescending/snarky articles (here) about people with Down syndrome that I have read in a long time. Her beef is with people who call the deliberate targeting of unborn babies with Down syndrome 'eugenics'...such an 'ugly' word, she says. So judgmental. Parents of kids with Down syndrome, she says, say that they have been blessed by their child, but Ms Marrin objects to that, because she feels condemned by their comments. Does anyone else see the irony here? She believes that 'eugenics' is an ugly word, yet she wholeheartedly endorses the abortion of babies based on a diagnosis of Down syndrome. If that isn't eugenics, what is? And if it is ok to abort a baby based on a diagnosis, why is it wrong to call it what it is?
She goes on to say that in her experience, a 'damaged baby equals a damaged family.'I beg to differ. Your experience is what you make it...from what I have seen, the vast majority of families have been changed for the better by the experience of having a family member with Ds. Many of those families have children with significant challenges, but the parents still feel blessed to have the child in their lives.
It always amazes me how people with no personal experience in raising a child w/Down syndrome feel qualified to tell us what it is 'really' like. How they are convinced that we must be either deluded or lying to actually believe that our childrens' lives are worthy, and how much better off everyone would be if we had simply done the 'right' thing and terminated our pregnancies.I am sorry to be so harsh in my comments, but I have had enough of people telling me that my son should not have been allowed to live. I am tired of people pretending that the act of 'termination' they are referring to so approvingly is just a 'choice', instead of the deliberate taking of another human's life. I am tired of people telling me that it is judgmental to use the word 'eugenics' when unborn babies are targeted for extinction based on a prenatal diagnosis of Down syndrome. And I am especially tired of the smug attitude that it is somehow morally superior to 'support a woman's right to choose' rather than to say, flat out, that the very act of abortion is immoral.

India Knight has written a great rebuttal to Minette's article. It was really refreshing to see how completely India exposed Minette's article for what it is: the musings of a cold-hearted, selfish individual frantically trying to convince her readers(and, I suspect, herself) that it is somehow morally superior to kill babies with disabilities rather than accept these children as a persons worthy of our love and respect.
India's article here:
posted by KathyR

Do People With Down syndrome Suffer?

Kristy has an excellent new post about this on her blog, Mosaic Moments

Posted by KathyR

The use of Ginkgo, Prozac and Focalin as a "treatment" for Down syndrome

The use of Ginkgo, Prozac and Focalin as a "treatment" for Down syndrome

A combination of drugs recommended for depression and attention deficit and hyperactivity disorder is being widely promoted as a "treatment" for Down syndrome. There is no scientific support for the routine use of this protocol by people who have Down syndrome. It is important that families and healthcare professionals are aware of the lack of evidence for safety and benefits from use of this protocol.

Other versions

* Traducción al español
* Deutsche Übersetzung
* Traduction française

We are a group of healthcare professionals, scientists and support organizations who care for and about people with Down syndrome. We wish to provide families with information about a proposed "treatment" for Down syndrome. We recognize that all parents wish to improve the lives of their children with Down syndrome and are interested in treatments, therapies and interventions that can help. We respect these wishes. At the same time, we are concerned that these "treatments" are potentially dangerous.

We are all aware of the advances that have been made in the basic science of memory and cognition in animal models of Down syndrome and are hopeful that these studies may lead to new ways to improve the lives of people who live with the condition.

Physicians and biomedical scientists evaluate potential interventions on the basis of safety and benefits to patients. As we describe below, the "treatments" that the Changing Minds Foundation recommends have not passed either test: there is no information whether these compounds are safe for children, especially young children. Furthermore, there is no evidence to support the claims for benefits that have been made.

Because we care about your children, we strongly urge families to consider this information when considering the claims for this "treatment".
The protocol

An organization called the Changing Minds Foundation is promoting a "new treatment for Down syndrome" that leads to "life changing" results. The "treatment" includes regular doses of Fluoxetine (Prozac), Dexmethylphenidate (Focalin XR) and Ginkgo biloba, Phosphatidylcholine, ‘Body Bio Balanced Oil’ and folinic acid. Some of these substances are associated with potential harmful side-effects. Some of these side-effects are of particular concern for people with Down syndrome and younger children.

Fluoxetine (Prozac) is used to treat depression, obsessive-compulsive disorder, bulimia nervosa and panic disorder. Dexmethylphenidate (Focalin XR) is used for the treatment of attention deficit and hyperactivity disorder (ADHD). Their use should be initiated and monitored by an appropriately qualified physician and should be limited to applications and treatments formally reviewed and approved by appropriate governmental and medical drug regulatory agencies.
Evidence of effects and safety

There is no scientific evidence to support the use of any of this protocol with people with Down syndrome of any age in order to improve memory or any other aspect of cognition. Nor is there any evidence that this protocol is safe for routine use with people who have Down syndrome.

The few studies referenced in support of this protocol are studies of mice. These mice have been engineered to carry extra copies of some genes similar to genes found on human chromosome 21. (People who have Down syndrome have an additional copy of this chromosome). These studies may or may not be good indicators of aspects of memory and learning for people who have Down syndrome. Studies in mice alone are not sufficient to support use of this (or any) protocol in children or adults with Down syndrome.

The Changing Minds Foundation promotional videos do not prove the claims of benefit from the protocol. While the people shown are clearly doing well, none of the individuals shown are functioning beyond the wide range seen in others with the syndrome. Claimed changes following ‘treatment’ could be the result of many factors. Only a controlled trial can give clear evidence of treatment effects.
Scientific progress

Scientific research has improved our understanding of Down syndrome considerably over the past 30 years. This has led to the better healthcare and education received by many people with Down syndrome today. Many scientists and organizations continue to work to improve our knowledge and understanding of effective ways to improve quality of life for people who live with Down syndrome.

Although the pace of further progress is often slow and this can be frustrating, only careful research and rigorous controlled trials can provide the evidence necessary to demonstrate that a therapy is useful and safe.
Further information

Although bilobalide, a component of Ginkgo Biloba, has been shown to be a GABA antagonist, the activity has been tested only in isolated cells and in only one subtype of GABA receptors. No controlled studies have been done in animals or humans to establish safe doses, or to prove the claimed benefits.


Fluoxetine (Prozac)

The action of fluoxetine on the growth of new nerve cells seen in one part of the brain of Ts65Dn mice has not been replicated in humans. Published case reports suggest that medications like Prozac used in pregnancy can harm the fetus. The potential impact on developing minds of babies and young children is unknown. A general, or uncontrolled, increase in nerve cell growth is not necessarily a good thing, especially over long periods of time.


Dexmethylphenidate (Focalin XR)

The use of stimulant medication should be carefully considered for children with unusual heart structures, which includes about half of children with Down syndrome. Again, use is not recommended for babies or very young children.


Folinic acid

Folinic acid supplementation has been shown to have no significant effects for infants and children with Down syndrome on a range of developmental measures.


‘Off label’ use

Families and healthcare professionals should understand that use of the protocol at this time is essentially experimental, with none of the benefits of a controlled trial. Monitoring for adverse effects would be the responsibility of the prescribing physician, with no one collecting that information to determine real risks. Similarly, positive effects would not be collected in a credible way that could be used by healthcare professionals to gauge the value of the treatments.

While there is no current evidence of the treatment's effectiveness for people with Down syndrome, there are significant risks of harm.
This statement is endorsed by the following scientists and clinicians:

* Roel Borstlap, Paediatrican n.p., Stichting Downsyndroom, The Netherlands.
* Sue Buckley OBE. Director of Science and Research, Down Syndrome Education International and Emeritus Professor of Developmental Disability, University of Portsmouth, UK.
* William I Cohen, MD. Developmental-Behavioral Pediatrician, Director, Down Syndrome Center of Western PA Children's Hospital of Pittsburgh of UPMC, Professor of Pediatrics and Psychiatry, University of Pittsburgh School of Medicine, USA.
* Sindoor S Desai, BDS, Cleveland, New York, USA.
* Jesús Flórez, MD, PhD. Professor of Pharmacology, University of Cantabria School of Medicine, Santander, Spain.
* Sallie Freeman, Ph.D. Professor Emeritus. Down Syndrome Clinic Advisor, Department of Human Genetics, Emory University School of Medicine, Georgia, USA.
* Edward J Goldson, MD. Pediatrician, The Children's Hospital, Aurora, Colorado, USA.
* Lilliam Gonzalez de Pijem, MD. Pediatric Endocrinologist. Puerto Rico Down Syndrome Association, San Juan, Puerto Rico.
* Joan E Guthrie Medlen, RD, LD. Vice President Down Syndrome Education USA, Director, Disability Compass, Publisher, Phronesis Publishing, Author, The Down Syndrome Nutrition Handbook.
* Rob Hanson, MD, PhD. Pediatric Cancer and Hematology Center, St. John's Mercy Medical Center, St. Louis, Missouri, USA.
* Michael M Harpold, PhD, Chief Executive Officer, Down Syndrome Research and Treatment Foundation, USA.
* Jacqueline London, Professor of Molecular and Pathological Biochemistry, University Paris-Diderot, Paris, France.
* Acisclo M Marxuach, MD. Fundación Puertorriqueña Síndrome Down, San Juan, Puerto Rico.
* Philip J Mattheis, MD. Associate Professor, Cincinnati Children's Hospital Medical Center, Ohio, USA.
* William C Mobley MD, PhD. Professor, Department of Neurology and Neurological Sciences and Director, Center for Research and Treatment of Down Syndrome, Stanford University, California, USA.
* David Patterson, PhD. Professor, Department of Biological Sciences, Eleanor Roosevelt Insitute, University of Denver, Colorado, USA.
* Alberto Rasore-Quartino, Professor, Unit of Neonatology, Galliera Hospital, Genoa, Italy.
* David S Smith, MD. Program Director, Down Syndrome Clinic of Wisconsin Children's Hospital, Wisconsin, USA.
* Dr Renaud Touraine, CHU-Hôpital Nord, Service de Génétique, Saint Etienne, France
* Jeannie Visootsak, MD, FAAP. Assistant Professor, Developmental-Behavioral Pediatrics, Department of Human Genetics & Pediatrics, Emory University School of Medicine, Georgia, USA.
* Patricia White, MD, Chair, Board of Directors, Down Syndrome Research and Treatment Foundation, USA.

This statement is endorsed by the following organizations:

* Association Francaise pour la Recherche sur la Trisomie 21, France.
* Association of Parents and Friends of Children with Down Syndrome, Prague, Czech Republic.
* Centrul de Resurse Sindrom Down, Bucharest, Romania.
* Deutsches Down-Syndrom InfoCenter, Hammerhöhe, Lauf, Germany.
* Down Syndrome Education International.
* Down Syndrome Education USA.
* Down Syndrome International.
* Down Syndrome New South Wales, Australia.
* Down Syndrome Research and Treatment Foundation, USA.
* Down Syndrome Research Foundation, Vancouver, Canada.
* European Down Syndrome Association.
* Fundación Iberoamericana Down21, Spain.
* Fundación Síndrome de Down de Cantabria, Spain.
* National Down Syndrome Congress, USA.
* National Down Syndrome Society, USA.
* Stichting Downsyndroom, The Netherlands.
* Trisomie 21 France.

Distribution of this statement

The use of Ginkgo, Prozac and Focalin as a "treatment" for Down syndrome is licensed under a Creative Commons Attribution-No Derivative Works 3.0 Unported License. In summary, this means that you are free to share, copy, distribute and transmit this statement as long as you do not alter it. For any reuse or distribution, you must make clear to others these terms.
Posted by Carol

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