Did you know that 90% of babies with Down syndrome are aborted? Maybe if we show the world that treatment is available to help their brains.....fewer parents would choose this route. Help spread the word about Changing Minds Foundation. Tell a friend today!
Showing posts with label treatment. Show all posts
Showing posts with label treatment. Show all posts
Tuesday, November 22, 2011
Wednesday, December 8, 2010
Confirmation....yet again!
Well, many of you keep asking for confirmation that the research we found is true about poor memory in Down syndrome. Here is another one......more confirmation that memory is definitely a problem in DS! This is recent research, notice the date of May 2010. For those of you who don't speak Science lingo, "hippocampal dentate gyrus" means memory in plain English.
Cereb Cortex. 2010 May;20(5):1131-43. Epub 2009 Aug 26.
Enlarged brain ventricles and impaired neurogenesis in the Ts1Cje and Ts2Cje mouse models of Down syndrome.
Ishihara K, Amano K, Takaki E, Shimohata A, Sago H, Epstein CJ, Yamakawa K.
Laboratory for Neurogenetics, RIKEN, Brain Science Institute, Saitama 351-0198, Japan.
Abstract
Down syndrome (DS) is the most common cause of mental retardation. Although structural and neurogenic abnormalities have been shown in the brains of DS patients, the molecular etiology is still unknown. To define it, we have performed structural and histological examinations of the brains of Ts1Cje and Ts2Cje, 2 mouse models for DS. These mice carry different length of trisomic segments of mouse chromosome 16 that are orthologous to human chromosome 21. At 3 months of age, ventricular enlargements were observed in both Ts1Cje and Ts2Cje brains at a similar degree. Both mice also showed decreases of the number of doublecortin-positive neuroblasts and thymidine-analog BrdU-labeled proliferating cells in the subventricular zone of the lateral ventricles (LVs) and in the hippocampal dentate gyrus at a similar degree, suggesting impaired adult neurogenesis. Additionally, at embryonic day 14.5, both strains of mice, when compared with diploid littermates, had smaller brains and decreased cortical neurogenesis that could possibly contribute to the ventricular enlargements observed in adulthood. Our findings suggest that the trisomic segment of the Ts1Cje mouse, which is shared with Ts2Cje, contains the genes that are responsible for these abnormal phenotypes and could be relevant to the mental retardation associated with DS.
PMID: 19710359 [PubMed - indexed for MEDLINE]
Cereb Cortex. 2010 May;20(5):1131-43. Epub 2009 Aug 26.
Enlarged brain ventricles and impaired neurogenesis in the Ts1Cje and Ts2Cje mouse models of Down syndrome.
Ishihara K, Amano K, Takaki E, Shimohata A, Sago H, Epstein CJ, Yamakawa K.
Laboratory for Neurogenetics, RIKEN, Brain Science Institute, Saitama 351-0198, Japan.
Abstract
Down syndrome (DS) is the most common cause of mental retardation. Although structural and neurogenic abnormalities have been shown in the brains of DS patients, the molecular etiology is still unknown. To define it, we have performed structural and histological examinations of the brains of Ts1Cje and Ts2Cje, 2 mouse models for DS. These mice carry different length of trisomic segments of mouse chromosome 16 that are orthologous to human chromosome 21. At 3 months of age, ventricular enlargements were observed in both Ts1Cje and Ts2Cje brains at a similar degree. Both mice also showed decreases of the number of doublecortin-positive neuroblasts and thymidine-analog BrdU-labeled proliferating cells in the subventricular zone of the lateral ventricles (LVs) and in the hippocampal dentate gyrus at a similar degree, suggesting impaired adult neurogenesis. Additionally, at embryonic day 14.5, both strains of mice, when compared with diploid littermates, had smaller brains and decreased cortical neurogenesis that could possibly contribute to the ventricular enlargements observed in adulthood. Our findings suggest that the trisomic segment of the Ts1Cje mouse, which is shared with Ts2Cje, contains the genes that are responsible for these abnormal phenotypes and could be relevant to the mental retardation associated with DS.
PMID: 19710359 [PubMed - indexed for MEDLINE]
Tuesday, October 12, 2010
Validation for Treatment of the Mental Challenges in Down Syndrome
The following was written by Linda Blevins, one of Changing Minds Foundation's founding members. Her son with DS is 16 and been on treatment for 5 years.
Article written by: Linda Blevins
Choline improves Cognition in Down syndrome mice models.
The Changing Minds Foundation protocol is based upon scientific research. The newest research supports the CMF science based protocol for the treatment of cognitive challenges in Down syndrome.
CMF protocol recommends the use of phosphotidyle choline (PC) rather than just plain choline. PC is more potent and is the active form the body needs. The link to the CMF web site explains more about PC. http://www.changingmindsfoundation.org/documents/phosphatidyl_choline.html
A number of scientific studies have vailidated the CMF protocol which targets critical cycles that function poorly in Down syndrome. These cycles produce invaluable neurotransmitters that are needed for learning, focus, attention, memory production and growing neurons for connection and signalling. (Who doesn't think that's important???)..Though sometimes we don't appreciate the new behaviors that come from growing a brain. Yet, I love the educational progress. Jordan's current school lessons examples:
--Spelling words: several, grumble, putrid
--Vocabulary words: etiquette, obnoxious
Linda Blevins
Science News
http://www.sciencedaily.com/releases/2010/06/100603132456.htm
More Choline for Pregnant, Nursing Women Could Reduce Down Syndrome Dysfunction, Guard Against Dementia
ScienceDaily (June 4, 2010) — More choline during pregnancy and nursing could provide lasting cognitive and emotional benefits to individuals with Down syndrome and protect against neurodegenerative conditions such as Alzheimer's disease, suggests a new Cornell study of mice.
The findings, published June 2 in Behavioral Neuroscience, could help lead to increasing the maternal dietary recommendations for choline (currently 450 milligrams a day during pregnancy, 550 milligrams for lactation), a nutrient found in egg yolks, liver, nuts and such vegetables as broccoli and cauliflower.
"We found that supplementing the maternal diet with additional choline resulted in dramatic improvements in attention and some normalization of emotion regulation in a mouse model of Down syndrome," said lead author Barbara Strupp, professor of nutritional sciences and of psychology. The researchers also found evidence for "subtle, but statistically significant, improvement in learning ability in the non-Down syndrome littermates."
In addition to mental retardation, Down syndrome individuals often experience dementia in middle age as a result of brain neuron atrophy similar to that suffered by people with Alzheimer's disease. Strupp noted that the improved mental abilities found in the Down syndrome mice following maternal choline supplements could indicate protection from such neurodegeneration "in the population at large."
Strupp and her co-authors tested Down syndrome model mice born from mothers fed a normal diet and those given choline supplements during their three-week pregnancy and three-week lactation period, as well as normal mice born from mothers with and without additional choline. The choline-supplemented mothers received approximately 4.5 times more choline (roughly comparable to levels at the higher range of human intake) than unsupplemented mothers.
At six months of age, the mice performed a series of behavioral tasks for about six months to assess their impulsivity, attention span, emotion control and other mental abilities.
In addition to dramatic improvements in attention, the researchers found that the unsupplemented Down syndrome model mice became more agitated after a mistake than normal mice, jumping repeatedly and taking longer to initiate the next trial, whereas the choline-supplemented Down syndrome model mice showed partial improvement in these areas.
"I'm impressed by the magnitude of the cognitive benefits seen in the Down syndrome model mice," Strupp said. "Moreover, these are clearly lasting cognitive improvements, seen many months after the period of choline supplementation."
Strupp noted that the results are consistent with studies by other researchers that found increased maternal choline intake improves offspring cognitive abilities in rats. However, this is the first study to evaluate the effects of maternal choline supplementation in a rodent model of Down syndrome. This is also one of the few studies that has evaluated offspring attentional function and effects in mice, rather than rats, Strupp noted.
Previous studies of humans and laboratory animals have shown that supplementing the diets of adults with choline has proven to be largely ineffective in improving cognition. "Although the precise mechanism is unknown, these lasting beneficial effects of choline observed in the present study are likely to be limited to increased intake during very early development," Strupp said.
The study, funded in part by the National Institutes of Health (NIH), was part of the dissertation of Jisook Moon, Ph.D. '06. Other Cornell collaborators included Myla Strawderman, research associate in nutritional sciences; David Levitsky, professor of nutrition and of psychology; May Chen '07 and Shruti Gandhy '07.
Strupp and collaborators have received additional NIH funding to study the neural mechanisms underlying the positive cognitive effects of perinatal choline supplementation observed in this study.
Article written by: Linda Blevins
Choline improves Cognition in Down syndrome mice models.
The Changing Minds Foundation protocol is based upon scientific research. The newest research supports the CMF science based protocol for the treatment of cognitive challenges in Down syndrome.
CMF protocol recommends the use of phosphotidyle choline (PC) rather than just plain choline. PC is more potent and is the active form the body needs. The link to the CMF web site explains more about PC. http://www.changingmindsfoundation.org/documents/phosphatidyl_choline.html
A number of scientific studies have vailidated the CMF protocol which targets critical cycles that function poorly in Down syndrome. These cycles produce invaluable neurotransmitters that are needed for learning, focus, attention, memory production and growing neurons for connection and signalling. (Who doesn't think that's important???)..Though sometimes we don't appreciate the new behaviors that come from growing a brain. Yet, I love the educational progress. Jordan's current school lessons examples:
--Spelling words: several, grumble, putrid
--Vocabulary words: etiquette, obnoxious
Linda Blevins
Science News
http://www.sciencedaily.com/releases/2010/06/100603132456.htm
More Choline for Pregnant, Nursing Women Could Reduce Down Syndrome Dysfunction, Guard Against Dementia
ScienceDaily (June 4, 2010) — More choline during pregnancy and nursing could provide lasting cognitive and emotional benefits to individuals with Down syndrome and protect against neurodegenerative conditions such as Alzheimer's disease, suggests a new Cornell study of mice.
The findings, published June 2 in Behavioral Neuroscience, could help lead to increasing the maternal dietary recommendations for choline (currently 450 milligrams a day during pregnancy, 550 milligrams for lactation), a nutrient found in egg yolks, liver, nuts and such vegetables as broccoli and cauliflower.
"We found that supplementing the maternal diet with additional choline resulted in dramatic improvements in attention and some normalization of emotion regulation in a mouse model of Down syndrome," said lead author Barbara Strupp, professor of nutritional sciences and of psychology. The researchers also found evidence for "subtle, but statistically significant, improvement in learning ability in the non-Down syndrome littermates."
In addition to mental retardation, Down syndrome individuals often experience dementia in middle age as a result of brain neuron atrophy similar to that suffered by people with Alzheimer's disease. Strupp noted that the improved mental abilities found in the Down syndrome mice following maternal choline supplements could indicate protection from such neurodegeneration "in the population at large."
Strupp and her co-authors tested Down syndrome model mice born from mothers fed a normal diet and those given choline supplements during their three-week pregnancy and three-week lactation period, as well as normal mice born from mothers with and without additional choline. The choline-supplemented mothers received approximately 4.5 times more choline (roughly comparable to levels at the higher range of human intake) than unsupplemented mothers.
At six months of age, the mice performed a series of behavioral tasks for about six months to assess their impulsivity, attention span, emotion control and other mental abilities.
In addition to dramatic improvements in attention, the researchers found that the unsupplemented Down syndrome model mice became more agitated after a mistake than normal mice, jumping repeatedly and taking longer to initiate the next trial, whereas the choline-supplemented Down syndrome model mice showed partial improvement in these areas.
"I'm impressed by the magnitude of the cognitive benefits seen in the Down syndrome model mice," Strupp said. "Moreover, these are clearly lasting cognitive improvements, seen many months after the period of choline supplementation."
Strupp noted that the results are consistent with studies by other researchers that found increased maternal choline intake improves offspring cognitive abilities in rats. However, this is the first study to evaluate the effects of maternal choline supplementation in a rodent model of Down syndrome. This is also one of the few studies that has evaluated offspring attentional function and effects in mice, rather than rats, Strupp noted.
Previous studies of humans and laboratory animals have shown that supplementing the diets of adults with choline has proven to be largely ineffective in improving cognition. "Although the precise mechanism is unknown, these lasting beneficial effects of choline observed in the present study are likely to be limited to increased intake during very early development," Strupp said.
The study, funded in part by the National Institutes of Health (NIH), was part of the dissertation of Jisook Moon, Ph.D. '06. Other Cornell collaborators included Myla Strawderman, research associate in nutritional sciences; David Levitsky, professor of nutrition and of psychology; May Chen '07 and Shruti Gandhy '07.
Strupp and collaborators have received additional NIH funding to study the neural mechanisms underlying the positive cognitive effects of perinatal choline supplementation observed in this study.
Sunday, October 10, 2010
Early Pharmacotherapy????
An outstanding piece of evidence emerged June of this year. Early treatment of the Down syndrome mouse "restores" cognitive performance. They didn't say "invents" cognitive performance. They say RESTORES. This implies that it is there waiting to be unleashed. And in fact, that is exactly what we observe with the children treated with the CMF protocol. The medicine unveils the awesome person inside.
The medicine used in this study was prozac (fluoxetine generic name). The nerves don't grow or develop properly in the memory area of the brain in Down syndrome. With early treatment with prozac, these DS mice had more normal brain development and had a complete recovery of memory task performance.
All I can say is WOW! We should be dancing on the rooftops and down on our knees thanking God. How easy is this. A known drug with 30 year history and cheap (as low as $3/ month at Walmart).
Watch John (5yo) in action who has been treated with prozac since he was 2 years old:
http://changingmindsfoundation.org/documents/videoblog.html
Here is an abstract of the study mentioned above:
Early pharmacotherapy restores neurogenesis and cognitive performance in the Ts65Dn mouse model for Down syndrome.
Bianchi P, Ciani E, Guidi S, Trazzi S, Felice D, Grossi G, Fernandez M, Giuliani A, Calzà L, Bartesaghi R.
Department of Human and General Physiology, University of Bologna, I-40126 Bologna, Italy.
Abstract
Down syndrome (DS) is a genetic pathology characterized by intellectual disability and brain hypotrophy. Widespread neurogenesis impairment characterizes the fetal and neonatal DS brain, strongly suggesting that this defect may be a major determinant of mental retardation. Our goal was to establish, in a mouse model for DS, whether early pharmacotherapy improves neurogenesis and cognitive behavior. Neonate Ts65Dn mice were treated from postnatal day (P) 3 to P15 with fluoxetine, an antidepressant that inhibits serotonin (5-HT) reuptake and increases proliferation in the adult Ts65Dn mouse (Clark et al., 2006). On P15, they received a BrdU injection and were killed after either 2 h or 1 month. Results showed that P15 Ts65Dn mice had notably defective proliferation in the hippocampal dentate gyrus, subventricular zone, striatum, and neocortex and that proliferation was completely rescued by fluoxetine. In the hippocampus of untreated P15 Ts65Dn mice, we found normal 5-HT levels but a lower expression of 5-HT1A receptors and brain-derived neurotrophic factor (BDNF). In Ts65Dn mice, fluoxetine treatment restored the expression of 5-HT1A receptors and BDNF. One month after cessation of treatment, there were more surviving cells in the dentate gyrus of Ts65Dn mice, more cells with a neuronal phenotype, more proliferating precursors, and more granule cells. These animals were tested for contextual fear conditioning, a hippocampus-dependent memory task, and exhibited a complete recovery of memory performance. Results show that early pharmacotherapy with a drug usable by humans can correct neurogenesis and behavioral impairment in a model for DS.
PMID: 20592198 [PubMed - indexed for MEDLINE]
The medicine used in this study was prozac (fluoxetine generic name). The nerves don't grow or develop properly in the memory area of the brain in Down syndrome. With early treatment with prozac, these DS mice had more normal brain development and had a complete recovery of memory task performance.
All I can say is WOW! We should be dancing on the rooftops and down on our knees thanking God. How easy is this. A known drug with 30 year history and cheap (as low as $3/ month at Walmart).
Watch John (5yo) in action who has been treated with prozac since he was 2 years old:
http://changingmindsfoundation.org/documents/videoblog.html
Here is an abstract of the study mentioned above:
J Neurosci. 2010 Jun 30;30(26):8769-79.
Early pharmacotherapy restores neurogenesis and cognitive performance in the Ts65Dn mouse model for Down syndrome.
Bianchi P, Ciani E, Guidi S, Trazzi S, Felice D, Grossi G, Fernandez M, Giuliani A, Calzà L, Bartesaghi R.
Department of Human and General Physiology, University of Bologna, I-40126 Bologna, Italy.
Abstract
Down syndrome (DS) is a genetic pathology characterized by intellectual disability and brain hypotrophy. Widespread neurogenesis impairment characterizes the fetal and neonatal DS brain, strongly suggesting that this defect may be a major determinant of mental retardation. Our goal was to establish, in a mouse model for DS, whether early pharmacotherapy improves neurogenesis and cognitive behavior. Neonate Ts65Dn mice were treated from postnatal day (P) 3 to P15 with fluoxetine, an antidepressant that inhibits serotonin (5-HT) reuptake and increases proliferation in the adult Ts65Dn mouse (Clark et al., 2006). On P15, they received a BrdU injection and were killed after either 2 h or 1 month. Results showed that P15 Ts65Dn mice had notably defective proliferation in the hippocampal dentate gyrus, subventricular zone, striatum, and neocortex and that proliferation was completely rescued by fluoxetine. In the hippocampus of untreated P15 Ts65Dn mice, we found normal 5-HT levels but a lower expression of 5-HT1A receptors and brain-derived neurotrophic factor (BDNF). In Ts65Dn mice, fluoxetine treatment restored the expression of 5-HT1A receptors and BDNF. One month after cessation of treatment, there were more surviving cells in the dentate gyrus of Ts65Dn mice, more cells with a neuronal phenotype, more proliferating precursors, and more granule cells. These animals were tested for contextual fear conditioning, a hippocampus-dependent memory task, and exhibited a complete recovery of memory performance. Results show that early pharmacotherapy with a drug usable by humans can correct neurogenesis and behavioral impairment in a model for DS.
PMID: 20592198 [PubMed - indexed for MEDLINE]
Labels:
ADD/ADHD,
anxiety,
down syndrome,
early pharmacotherapy,
fluoxetine,
neurogenesis,
prozac,
treatment
Thursday, September 9, 2010
Prozac Anyone?
Another study published June 2010 supports the use of Prozac in Down syndrome. Not only does it support the use of Prozac, it indicates Prozac should be started early, probably at birth. Maybe prenatally if you could.
The goal of the study was to see if early pharmacotherapy would improve neurogenesis and cognitive behavior. Guess what? It did.
Neurogenesis is literally what it sounds like. The birth of new neurons or nerves. It is now known that the ability to grow new nerves is a life long affair. At one time, it was believed that higher mammals (humans) did not have the ability to grow new neurons. It has come to light in the research world that we are not above new neurons. In fact, losing the ability to stimulate the growth of new neurons is what leads to depression and other neurodegenerative conditions.
Prozac has been on the market for 30 years. Over 55 million prescriptions have been written. If it had a terrible side effect, we would know. Stomach upset is the most common side effect. I get that from Mexican food.
I'm not making light of using drugs but my point is that weighing the options of degeneration versus regeneration, I'll take the regeneration, thank you.
The study looked at memory and learning in the Down syndrome mouse model. The DS mice did just as well as the typical mice in memory tests.
The thing we should be jumping up and down about is RESTORES COGNITIVE PERFORMANCE!!!!
The goal of the study was to see if early pharmacotherapy would improve neurogenesis and cognitive behavior. Guess what? It did.
Neurogenesis is literally what it sounds like. The birth of new neurons or nerves. It is now known that the ability to grow new nerves is a life long affair. At one time, it was believed that higher mammals (humans) did not have the ability to grow new neurons. It has come to light in the research world that we are not above new neurons. In fact, losing the ability to stimulate the growth of new neurons is what leads to depression and other neurodegenerative conditions.
Prozac has been on the market for 30 years. Over 55 million prescriptions have been written. If it had a terrible side effect, we would know. Stomach upset is the most common side effect. I get that from Mexican food.
I'm not making light of using drugs but my point is that weighing the options of degeneration versus regeneration, I'll take the regeneration, thank you.
The study looked at memory and learning in the Down syndrome mouse model. The DS mice did just as well as the typical mice in memory tests.
"These animals were tested for contextual fear conditioning, a hippocampus-dependent memory task, and exhibited a complete recovery of memory performance. Results show that early pharmacotherapy with a drug usable by humans can correct neurogenesis and behavioral impairment in a model for DS."The abstract and full study is available online "Early Pharmacotherapy Restores Neurogenesis and Cognitive Performance in the Ts65Dn Mouse Model for Down Syndrome"
The thing we should be jumping up and down about is RESTORES COGNITIVE PERFORMANCE!!!!
Tuesday, September 7, 2010
Watch this video from Research Down Syndrome
I found an amazing video advertisement for Down syndrome Research today through a google alert! Please take a minute or two to watch it, and then pass it on so others can see it too. It is about the research that has been done and is being done on memory and cognition and how it is leading to treatments and independent living for people with DS.
Check out Research Down Syndrome
Check out Research Down Syndrome
Monday, August 30, 2010
Cure Down Syndrome Now
If I read one more time that Down syndrome can't be cured because it is a chromosome disorder, I will scream!!!!!!
Why did we get shoved into that box?
Rett syndrome is a chromosome disorder.
Go to the Rett syndrome website
"The core mission of the IRSF (International Rett Syndrome Foundation) is to fund research for treatments and a cure for Rett syndrome while enhancing the overall quality of life for those living with Rett syndrome by providing information, programs, and services."
Fragile X is a chromosome disorder.
FRAXA is a nonprofit organization run by parents. Our mission: to find treatments and a cure for Fragile X by funding the most promising research. FRAXA has funded $18 million in research.
Prader-Willi syndrome is a chromosome disorder.
There logo is below:AAAAaaaaaggghhhhh!!!!
Everyone gets a CURE but Down Syndrome!!!
We should at least try!!!!!!!!!!!
Saturday, August 28, 2010
Cure Down Syndrome? (Part 3)
Brain Problem 2:
Loss of neurons in the hippocampus (area of the brain where memories form):
Babies with Down syndrome lose 50% of their neuronal structure by 6 months of age. This seems like an insurmountable problem. In fetuses with Down syndrome, neurons fail to show normal dendritic development, yielding a “tree in winter” appearance. This developmental failure is thought to result in cognitive impairment.
Related Articles for Problem 2:
“Tree in winter” dendritic development
http://journals.lww.com/jneuropath/Abstract/2004/07000/Trisomy_21_and_the_Brain.1.aspx
2010 Prozac (Fluoxetine) Study
http://www.jneurosci.org/cgi/content/abstract/30/26/8769?maxtoshow=&hits=10&RESULTFORMAT=&fulltext=fluoxetine+Renata+Bartesaghi&andorexactfulltext=and&searchid=1&FIRSTINDEX=0&resourcetype=HWCIT
2006 Prozac (Fluoxetine) Study
http://www.ncbi.nlm.nih.gov/sites/pubmed/16624293?ordinalpos=1
2010 Prozac (Fluoxetine) Study
http://www.ncbi.nlm.nih.gov/pubmed/20592198
Additional Information about Prozac
http://www.changingmindsfoundation.org/documents/prozac.html
Remedy for Brain Problem 2:
In 2006, the University of Maryland School of Medicine treated Down syndrome mice with Prozac (generic name Fluoxetine). They discovered that Prozac treatment doubled the neuron count resulting in a normal level after 24 days. This is like increasing the hardware on your computer. It allows you to run more complicated software. Prozac received FDA approval in 2003 for ages 6 years and older. It seems clinically logical that people with Down syndrome could benefit from this drug because of the loss of neurons that occurs early and on an ongoing basis. Additionally, many people with Down syndrome commonly exhibit symptoms of anxiety and OCD early in life and depression later in life. Prozac can be used to address these issues as well. Participants as young as 10 months old are using the Prozac component of the protocol. Many young participants have been using Prozac for nearly 2 years without negative side effects.
Brain Problem 3:
Early onset Alzheimer Disease/Inflammation:
How do you lower the inflammatory markers safely and for a lifetime in a syndrome that represents an Alzheimer model?
Related Articles for Problem 3:
Phosphatidyl Choline
http://www.changingmindsfoundation.org/documents/phosphatidyl_choline.html
Omega 3, 6, 9 Oil
http://www.changingmindsfoundation.org/documents/body_bio_balanced_oil.html
Minocycline and Ts65Dn
http://www.ncbi.nlm.nih.gov/pubmed/15468085?ordinalpos=1&itool=EntrezSystem2.PEntrezPubmed.Pubmed_ResultsPanel.Pubmed_DefaultReportPanel.Pubmed_RVDocSum
Inflammation Resolution and Lipids
http://www.ncbi.nlm.nih.gov/pubmed/19630766
Remedy for Brain Problem 3:
There is tremendous evidence that Alzheimer's disease is a state of chronic inflammation, specifically neuroinflammation. Inflammation is the body's natural response to injury or assault. It begins the healing process. There is a flip side to inflammation called resolution. Resolution is an 'active' process with specific chemicals that clears and limits the inflammatory response. A recent study from Harvard identified chemicals that reduce or control the magnitude of the inflammatory response. These chemicals are called Specialized Pro-resolving Mediators (SPM). These chemicals are derived from lipids, in other words, fatty acids – thus the importance of Body Bio Oil and Phosphatidyl Choline. You want your body to make these SPM's. SPM's include resolvins, protectins and maresins and are biosynthesized from essential omega-3 fatty acid precursors. The CMF's protocol aims to decrease inflammation by using fatty acids such as Phosphatidyl Choline (PC), Sunflower oil and Flaxseed oil. When used in the correct ratios they provide a safe, effective way to lower C-reactive protein, Interleukin 1 and Tumor Necrosis Factor which can contribute to inflammatory processes in the brain. Phosphatidyl Choline is a phospholipid that makes up 50%of the cell membrane. The membrane is the lining of every nerve cell that carries our signals. PC is a safe and essential fatty acid that studies have shown to protect the nerves from damage. Sunflower and Flaxseed oils are known for reducing inflammation by triggering a “restoration pathway.”
Brain Problem 4:
Norepinephrine is a neurotransmitter that nerve cells use to communicate. Norepinephrine has been found to be deficient in the brains of Down syndrome mice. Additionally, many children with Down syndrome have a lack of concentration and behavior problems (ADD/ADHD symptoms). According to an article by Dr. Joseph Carver, some studies suggest that children/adults (typical) with ADHD may have only
ten to twenty-five percent of Norepinephrine found in the normal brain.
Related Articles for Problem 4:
Focalin XR
http://www.changingmindsfoundation.org/documents/focalin_xr.html
Stanford – Norepinephrine
http://med.stanford.edu/ism/2009/november/down-syndrome.html
Methylphenidate and Norepinephrine study
http://www.ncbi.nlm.nih.gov/pubmed/20691429
ADHD and Norepinephrine, Dr. Joseph Carver
http://www.enotalone.com/article/4121.html
Remedy for Brain Problem 4:
The benefits realized from adding a mild stimulant medication such as Focalin XR is twofold. First, stimulant medications (ADHD drugs) have been shown to enhance attention and learning. Second, ADHD drugs work on the Norepinephrine system! This type of medication is very individualized. Focalin XR works well for many people with Down syndrome. However, some individuals may have better results using a different stimulant medication.
Thoughts From Teresa Cody
“Do we wait until every detail is known? Did you know that no one knew how aspirin worked until the early 1990's? The details of biological systems are understood more today than any time before but why not use the information in real time? All of the medications in the protocol have been through clinical trials. OK, not specifically for Down syndrome but NO medication has been through clinical trials specifically for Down syndrome. For example, have you ever given your child an antibiotic? We know their immune system can be described at least, as different, if not immunodeficient. But faced with pneumonia or strep throat, the logical decision is to treat with a medication the rest of the population uses. Scientific research has shown that these medications should help correct specific problems in the brain. Problems current science indicates are present in the brains of people with Down syndrome. Some protocol participants have been using the protocol for four years now. The clinical observation of the 300 children and adults on the CMF protocol is that there is an amazing improvement of function including: verbal abilities, long term memory, working memory, gross motor and fine motor. What part of this do you not want?”
Frequently Asked Questions
1.) Is the CMF protocol the solution to all brain problems associated with Down syndrome? No – but it is a start. It is something we can do now to improve cognition as demonstrated by current protocol users.
2.) Will the CMF protocol make my child learn as well as a typically developing child? No – but it does allow most participants to learn and comprehend better than before - now.
3.) Where can I find suggested dosing information? You can find a Dose Chart at http://www.changingmindsfoundation.org/documents/dose_chart.html
4.) How much does the CMF protocol cost? Ginkgo Biloba is widely available, over the counter. It is a standardized formula, so the quality is consistent from brand to brand. A quick internet search found a bottle of GB with 100 capsules for $12.99 from one company. Prozac, generic name Fluoxetine, is available by prescription only. You can get a 30 day supply at most pharmacies for about $4. The cost of prescription ADHD drugs vary – generic drugs are cheaper than name brand. The recommended Body Bio Oils are the
expensive part of the protocol: Phosphatidyl Choline – 100 softgels $62 or a 8 ounce bottle $94, Body Bio Balance Oil (Omega 3,6,9) – 180 softgels $30, 16 ounce bottle $26. Other brands of Phosphatidyl Choline and Sunflower/Flaxseed oils are widely available online and in health food stores.
5.) How do I find more information about starting the protocol? Read the links attached to this paper. They include a wealth of information and will answer many of your questions. You can also order the documentary film and see participants as they are followed while on the protocol (available at http://www.changingmindsfoundation.org/ ).
6.) How long does the protocol work? Do the kids plateau after being on it for a period of time? According to the CMF, the kids who have been on the protocol the longest are still advancing and learning new things all the time. Just like any medicine, the dosage of these medications have to be rebalanced with time and growth. Be sure to click on “Success Stories” on the CMF's web page for further information.
7.) How do I present this information to my doctor? You can take a copy of this article along with printed copies of the referenced articles linked throughout. Organize the information in a folder and leave it for your doctor to review. Schedule a follow up appointment to discuss after he/she has had time to read the information.
8.) More questions? Contact the Changing Minds Foundation at
changingmindsfoundation@gmail.com
The Changing Minds Foundation currently has two opportunities for you to help fund research to improve cognition in people with Down syndrome. The first is a campaign called,
“Spare Change for Changing Minds.” You can read more about it and learn how to receive your cans for spare change on CMF's home page – click on 'We Can'
The second opportunity is to enter CMF's Ball Drop Contest. Purchase as many numbered golf balls as you want for $25 each. Every ball will give you a chance at a trip to Cabo San Lucas, Mexico!! On October 28th, at Wildcat Golf Club in Houston, all balls will be dropped from a helicopter hovering over the driving range. The first ball to land in the hole (or closest to the pin) wins the trip. The ball drop is limited to 2000 balls. Go to Golf Tournament and Ball Drop
Ask friends and family to support cognitive research by purchasing golf balls.
For Additional Information Please See the Following Websites
Changing Minds Foundation http://www.changingmindsfoundation.org/
Changing Minds Foundation's blog by Teresa Cody
http://www.changingmindsaboutdownsyndrome.blogspot.com/
Join Changing Minds Foundation on Facebook
http://www.facebook.com/pages/Changing-Minds-Foundation-Treatment-and-Research-for-Down-syndrome/101325513376?ref=ts
Join Changing Minds Foundation's NING site where parents discuss the protocol and their children
http://changingmindsfoundation.ning.com/main/authorization/signUp
Stanford's Down Syndrome Research Center
http://garnerlab.stanford.edu/
http://dsresearch.stanford.edu/research/
Join Stanford Down Syndrome Research on Facebook – keep updated with their blog
http://www.facebook.com/pages/Stanford-Down-Syndrome-Research-Center/378357949509?ref=ts
Loss of neurons in the hippocampus (area of the brain where memories form):
Babies with Down syndrome lose 50% of their neuronal structure by 6 months of age. This seems like an insurmountable problem. In fetuses with Down syndrome, neurons fail to show normal dendritic development, yielding a “tree in winter” appearance. This developmental failure is thought to result in cognitive impairment.
Related Articles for Problem 2:
“Tree in winter” dendritic development
http://journals.lww.com/jneuropath/Abstract/2004/07000/Trisomy_21_and_the_Brain.1.aspx
2010 Prozac (Fluoxetine) Study
http://www.jneurosci.org/cgi/content/abstract/30/26/8769?maxtoshow=&hits=10&RESULTFORMAT=&fulltext=fluoxetine+Renata+Bartesaghi&andorexactfulltext=and&searchid=1&FIRSTINDEX=0&resourcetype=HWCIT
2006 Prozac (Fluoxetine) Study
http://www.ncbi.nlm.nih.gov/sites/pubmed/16624293?ordinalpos=1
2010 Prozac (Fluoxetine) Study
http://www.ncbi.nlm.nih.gov/pubmed/20592198
Additional Information about Prozac
http://www.changingmindsfoundation.org/documents/prozac.html
Remedy for Brain Problem 2:
In 2006, the University of Maryland School of Medicine treated Down syndrome mice with Prozac (generic name Fluoxetine). They discovered that Prozac treatment doubled the neuron count resulting in a normal level after 24 days. This is like increasing the hardware on your computer. It allows you to run more complicated software. Prozac received FDA approval in 2003 for ages 6 years and older. It seems clinically logical that people with Down syndrome could benefit from this drug because of the loss of neurons that occurs early and on an ongoing basis. Additionally, many people with Down syndrome commonly exhibit symptoms of anxiety and OCD early in life and depression later in life. Prozac can be used to address these issues as well. Participants as young as 10 months old are using the Prozac component of the protocol. Many young participants have been using Prozac for nearly 2 years without negative side effects.
Brain Problem 3:
Early onset Alzheimer Disease/Inflammation:
How do you lower the inflammatory markers safely and for a lifetime in a syndrome that represents an Alzheimer model?
Related Articles for Problem 3:
Phosphatidyl Choline
http://www.changingmindsfoundation.org/documents/phosphatidyl_choline.html
Omega 3, 6, 9 Oil
http://www.changingmindsfoundation.org/documents/body_bio_balanced_oil.html
Minocycline and Ts65Dn
http://www.ncbi.nlm.nih.gov/pubmed/15468085?ordinalpos=1&itool=EntrezSystem2.PEntrezPubmed.Pubmed_ResultsPanel.Pubmed_DefaultReportPanel.Pubmed_RVDocSum
Inflammation Resolution and Lipids
http://www.ncbi.nlm.nih.gov/pubmed/19630766
Remedy for Brain Problem 3:
There is tremendous evidence that Alzheimer's disease is a state of chronic inflammation, specifically neuroinflammation. Inflammation is the body's natural response to injury or assault. It begins the healing process. There is a flip side to inflammation called resolution. Resolution is an 'active' process with specific chemicals that clears and limits the inflammatory response. A recent study from Harvard identified chemicals that reduce or control the magnitude of the inflammatory response. These chemicals are called Specialized Pro-resolving Mediators (SPM). These chemicals are derived from lipids, in other words, fatty acids – thus the importance of Body Bio Oil and Phosphatidyl Choline. You want your body to make these SPM's. SPM's include resolvins, protectins and maresins and are biosynthesized from essential omega-3 fatty acid precursors. The CMF's protocol aims to decrease inflammation by using fatty acids such as Phosphatidyl Choline (PC), Sunflower oil and Flaxseed oil. When used in the correct ratios they provide a safe, effective way to lower C-reactive protein, Interleukin 1 and Tumor Necrosis Factor which can contribute to inflammatory processes in the brain. Phosphatidyl Choline is a phospholipid that makes up 50%of the cell membrane. The membrane is the lining of every nerve cell that carries our signals. PC is a safe and essential fatty acid that studies have shown to protect the nerves from damage. Sunflower and Flaxseed oils are known for reducing inflammation by triggering a “restoration pathway.”
Brain Problem 4:
Norepinephrine is a neurotransmitter that nerve cells use to communicate. Norepinephrine has been found to be deficient in the brains of Down syndrome mice. Additionally, many children with Down syndrome have a lack of concentration and behavior problems (ADD/ADHD symptoms). According to an article by Dr. Joseph Carver, some studies suggest that children/adults (typical) with ADHD may have only
ten to twenty-five percent of Norepinephrine found in the normal brain.
Related Articles for Problem 4:
Focalin XR
http://www.changingmindsfoundation.org/documents/focalin_xr.html
Stanford – Norepinephrine
http://med.stanford.edu/ism/2009/november/down-syndrome.html
Methylphenidate and Norepinephrine study
http://www.ncbi.nlm.nih.gov/pubmed/20691429
ADHD and Norepinephrine, Dr. Joseph Carver
http://www.enotalone.com/article/4121.html
Remedy for Brain Problem 4:
The benefits realized from adding a mild stimulant medication such as Focalin XR is twofold. First, stimulant medications (ADHD drugs) have been shown to enhance attention and learning. Second, ADHD drugs work on the Norepinephrine system! This type of medication is very individualized. Focalin XR works well for many people with Down syndrome. However, some individuals may have better results using a different stimulant medication.
Thoughts From Teresa Cody
“Do we wait until every detail is known? Did you know that no one knew how aspirin worked until the early 1990's? The details of biological systems are understood more today than any time before but why not use the information in real time? All of the medications in the protocol have been through clinical trials. OK, not specifically for Down syndrome but NO medication has been through clinical trials specifically for Down syndrome. For example, have you ever given your child an antibiotic? We know their immune system can be described at least, as different, if not immunodeficient. But faced with pneumonia or strep throat, the logical decision is to treat with a medication the rest of the population uses. Scientific research has shown that these medications should help correct specific problems in the brain. Problems current science indicates are present in the brains of people with Down syndrome. Some protocol participants have been using the protocol for four years now. The clinical observation of the 300 children and adults on the CMF protocol is that there is an amazing improvement of function including: verbal abilities, long term memory, working memory, gross motor and fine motor. What part of this do you not want?”
Frequently Asked Questions
1.) Is the CMF protocol the solution to all brain problems associated with Down syndrome? No – but it is a start. It is something we can do now to improve cognition as demonstrated by current protocol users.
2.) Will the CMF protocol make my child learn as well as a typically developing child? No – but it does allow most participants to learn and comprehend better than before - now.
3.) Where can I find suggested dosing information? You can find a Dose Chart at http://www.changingmindsfoundation.org/documents/dose_chart.html
4.) How much does the CMF protocol cost? Ginkgo Biloba is widely available, over the counter. It is a standardized formula, so the quality is consistent from brand to brand. A quick internet search found a bottle of GB with 100 capsules for $12.99 from one company. Prozac, generic name Fluoxetine, is available by prescription only. You can get a 30 day supply at most pharmacies for about $4. The cost of prescription ADHD drugs vary – generic drugs are cheaper than name brand. The recommended Body Bio Oils are the
expensive part of the protocol: Phosphatidyl Choline – 100 softgels $62 or a 8 ounce bottle $94, Body Bio Balance Oil (Omega 3,6,9) – 180 softgels $30, 16 ounce bottle $26. Other brands of Phosphatidyl Choline and Sunflower/Flaxseed oils are widely available online and in health food stores.
5.) How do I find more information about starting the protocol? Read the links attached to this paper. They include a wealth of information and will answer many of your questions. You can also order the documentary film and see participants as they are followed while on the protocol (available at http://www.changingmindsfoundation.org/ ).
6.) How long does the protocol work? Do the kids plateau after being on it for a period of time? According to the CMF, the kids who have been on the protocol the longest are still advancing and learning new things all the time. Just like any medicine, the dosage of these medications have to be rebalanced with time and growth. Be sure to click on “Success Stories” on the CMF's web page for further information.
7.) How do I present this information to my doctor? You can take a copy of this article along with printed copies of the referenced articles linked throughout. Organize the information in a folder and leave it for your doctor to review. Schedule a follow up appointment to discuss after he/she has had time to read the information.
8.) More questions? Contact the Changing Minds Foundation at
changingmindsfoundation@gmail.com
Research Needs Funding –
You Can Help – NOW
We, as individuals, must take it upon ourselves to financially support cognitive research like that being done by Dr. Craig Garner at Stanford's Down Syndrome Research Center. If families do not find cognitive research in Down syndrome a worthy charitable cause, then who else will?The Changing Minds Foundation currently has two opportunities for you to help fund research to improve cognition in people with Down syndrome. The first is a campaign called,
“Spare Change for Changing Minds.” You can read more about it and learn how to receive your cans for spare change on CMF's home page – click on 'We Can'
The second opportunity is to enter CMF's Ball Drop Contest. Purchase as many numbered golf balls as you want for $25 each. Every ball will give you a chance at a trip to Cabo San Lucas, Mexico!! On October 28th, at Wildcat Golf Club in Houston, all balls will be dropped from a helicopter hovering over the driving range. The first ball to land in the hole (or closest to the pin) wins the trip. The ball drop is limited to 2000 balls. Go to Golf Tournament and Ball Drop
Ask friends and family to support cognitive research by purchasing golf balls.
For Additional Information Please See the Following Websites
Changing Minds Foundation http://www.changingmindsfoundation.org/
Changing Minds Foundation's blog by Teresa Cody
http://www.changingmindsaboutdownsyndrome.blogspot.com/
Join Changing Minds Foundation on Facebook
http://www.facebook.com/pages/Changing-Minds-Foundation-Treatment-and-Research-for-Down-syndrome/101325513376?ref=ts
Join Changing Minds Foundation's NING site where parents discuss the protocol and their children
http://changingmindsfoundation.ning.com/main/authorization/signUp
Stanford's Down Syndrome Research Center
http://garnerlab.stanford.edu/
http://dsresearch.stanford.edu/research/
Join Stanford Down Syndrome Research on Facebook – keep updated with their blog
http://www.facebook.com/pages/Stanford-Down-Syndrome-Research-Center/378357949509?ref=ts
Labels:
ADD/ ADHD,
Alzheimer's,
anxiety,
cognitive research,
down syndrome,
prozac,
treatment
Friday, August 27, 2010
Cure Down Syndrome? (Part 2)
By Christy Sanchez
National Down Syndrome Society's (NDSS) Position The following excerpt is taken directly from the National Down Syndrome Society's website:
“Myth: Down syndrome can never be cured.
Truth: Research on Down syndrome is making great strides in identifying the genes on chromosome 21 that cause the characteristics of Down syndrome. Scientists now feel strongly that it will be possible to improve, correct or prevent many of the problems associated with Down syndrome in the future.”
The only difference between NDSS's position and that of Changing Minds Foundation is that the future is here and treatment to improve cognition is available now.
Changing Minds Foundation Holds 1st National Conference CMF held its 1st National Conference on July 23-24, 2010, in Houston, Texas. Attendees came from numerous states and as far away as Singapore. Thanks to a generous stipend provided by the Heart of Illinois Down Syndrome Association (HOIDSA), I was able to attend the conference. The following report is a summary of information gathered at the conference and information from the CMF's website and blog.
Neurobiology
The terms neurobiology and neuroscience can be used interchangeably. They refer to the biology or science of the nervous system. Researchers in the Department of Neuroscience at Stanford University are dedicated to developing theraputic strategies for normalizing cognition in people with Down syndrome Neurotransmitters regulate learning. In the brain of a person with Down syndrome these neurotransmitters are a little off or out of balance. They need a remedy to bring them back into balance. The good news is that we can treat this imbalance just like any other psychiatric disorder – with modern medicine. Just as life
expectancy has improved since 1983 with medical advancements, cognition can be improved with medical advancements - now!
What Problems are Addressed by the CMF Protocol?
The Changing Minds Foundation (CMF) has created a treatment protocol to address four of the neurological problems identified in Down syndrome. Most people with Down syndrome fall into the mild to moderat range of intellectual disability so even a small increase in cognitive ability (or IQ) can move an individual from being dependent on others throughout their lives to becoming independent members of society. The following is based on information taken from CMF's website and conference handbook.
Brain Problem 1: The major cause of cognitive impairment in mouse models of Down syndrome is over inhibition by the GABA receptor system. In 2003, Stanford University researchers discovered that the GABA receptor, an inhibitor, was continuously stimulated. Since the GABA receptor is an inhibitor of brain function, this stimulation actually causes a decrease in cognition. The nerves in the memory area of the brain are prevented from firing efficiently. Another way we can think about this is the use of alcohol or benzodiazepenes, (Valium and Versed). Both alcohol, Valium and Versed stimulate GABA receptors in the
brain. This results in slowed activity in the brain. Just as many of us have seen people's brains (and thus cognitive function) altered by alcohol or tranquilizers so too may the brain of one with Down syndrome be slowed by over-inhibition.
Related Articles for Problem 1:
Stanford, PTZ, & GABA
http://med.stanford.edu/news_releases/2007/february/down.html
Ginkgo Biloba & GABA
http://www.changingmindsfoundation.org/documents/ginkgobiloba.html
Remedy for Brain Problem 1: To get the proper level of GABA (so that learning can occur), a GABA antagonist was used to turn the inhibition down. Bilobalide, a component of Ginkgo Biloba extract, reversed the cognitive impairment in the mouse model. Stanford researchers are raising money to do a formal clinical trial with a GABA antagonist drug called PTZ, but it is not yet approved by the FDA - and this process will unfortunately take up to 10 years.
Ginkgo Biloba (also a GABA antagonist) is widely available in health food stores - now. Participants using the CMF protocol are realizing good results using Ginkgo Biloba. We now know that lack of memory is the lock on the door of learning for people with Down syndrome. Ginkgo Biloba is the key for opening the door of learning! Protocol participants as young as five weeks old are using Ginkgo Biloba.
Check in Tomorrow for Brain Problem # 2
National Down Syndrome Society's (NDSS) Position The following excerpt is taken directly from the National Down Syndrome Society's website:
“Myth: Down syndrome can never be cured.
Truth: Research on Down syndrome is making great strides in identifying the genes on chromosome 21 that cause the characteristics of Down syndrome. Scientists now feel strongly that it will be possible to improve, correct or prevent many of the problems associated with Down syndrome in the future.”
The only difference between NDSS's position and that of Changing Minds Foundation is that the future is here and treatment to improve cognition is available now.
Changing Minds Foundation Holds 1st National Conference CMF held its 1st National Conference on July 23-24, 2010, in Houston, Texas. Attendees came from numerous states and as far away as Singapore. Thanks to a generous stipend provided by the Heart of Illinois Down Syndrome Association (HOIDSA), I was able to attend the conference. The following report is a summary of information gathered at the conference and information from the CMF's website and blog.
Neurobiology
The terms neurobiology and neuroscience can be used interchangeably. They refer to the biology or science of the nervous system. Researchers in the Department of Neuroscience at Stanford University are dedicated to developing theraputic strategies for normalizing cognition in people with Down syndrome Neurotransmitters regulate learning. In the brain of a person with Down syndrome these neurotransmitters are a little off or out of balance. They need a remedy to bring them back into balance. The good news is that we can treat this imbalance just like any other psychiatric disorder – with modern medicine. Just as life
expectancy has improved since 1983 with medical advancements, cognition can be improved with medical advancements - now!
What Problems are Addressed by the CMF Protocol?
The Changing Minds Foundation (CMF) has created a treatment protocol to address four of the neurological problems identified in Down syndrome. Most people with Down syndrome fall into the mild to moderat range of intellectual disability so even a small increase in cognitive ability (or IQ) can move an individual from being dependent on others throughout their lives to becoming independent members of society. The following is based on information taken from CMF's website and conference handbook.
Brain Problem 1: The major cause of cognitive impairment in mouse models of Down syndrome is over inhibition by the GABA receptor system. In 2003, Stanford University researchers discovered that the GABA receptor, an inhibitor, was continuously stimulated. Since the GABA receptor is an inhibitor of brain function, this stimulation actually causes a decrease in cognition. The nerves in the memory area of the brain are prevented from firing efficiently. Another way we can think about this is the use of alcohol or benzodiazepenes, (Valium and Versed). Both alcohol, Valium and Versed stimulate GABA receptors in the
brain. This results in slowed activity in the brain. Just as many of us have seen people's brains (and thus cognitive function) altered by alcohol or tranquilizers so too may the brain of one with Down syndrome be slowed by over-inhibition.
Related Articles for Problem 1:
Stanford, PTZ, & GABA
http://med.stanford.edu/news_releases/2007/february/down.html
Ginkgo Biloba & GABA
http://www.changingmindsfoundation.org/documents/ginkgobiloba.html
Remedy for Brain Problem 1: To get the proper level of GABA (so that learning can occur), a GABA antagonist was used to turn the inhibition down. Bilobalide, a component of Ginkgo Biloba extract, reversed the cognitive impairment in the mouse model. Stanford researchers are raising money to do a formal clinical trial with a GABA antagonist drug called PTZ, but it is not yet approved by the FDA - and this process will unfortunately take up to 10 years.
Ginkgo Biloba (also a GABA antagonist) is widely available in health food stores - now. Participants using the CMF protocol are realizing good results using Ginkgo Biloba. We now know that lack of memory is the lock on the door of learning for people with Down syndrome. Ginkgo Biloba is the key for opening the door of learning! Protocol participants as young as five weeks old are using Ginkgo Biloba.
Check in Tomorrow for Brain Problem # 2
Labels:
down syndrome,
GABA,
Ginkgo biloba,
learning and Memory,
PTZ,
treatment
Wednesday, August 25, 2010
Cure Down Syndrome? (Part 1)
This essay was written by a mother with a young child with Down syndrome. She did such a terrific job I asked her if I could post it on my blog. Enjoy!
Cure Down Syndrome?
By Christy Sanchez
According to Webster's Online Dictionary, the definition of cure is to remedy; to remove; to heal. We have always been told that there is no “cure” for Down syndrome. That is – we’ve been told there is no remedy for Down syndrome. But is that really true? Is that really the case in 2010? According to the National Down Syndrome Society, in 1983, the average life expectancy of a person with Down syndrome was just 25 years old. Fast forward to now - the current life expectancy averages 56 years. What caused this change in life expectancy?
Did Down syndrome change in 27 years? Did the trisomy of chromosome 21 change between 1983 and 2010? Of course not - the genetics are exactly the same now as they
were then. A baby born in 2010 with Down syndrome has the same trisomy of chromosome 21 as the baby born in 1983. So what caused the increase in life expectancy? The answer is quite simple – advances in medicine. Not one parent or professional will argue this point. It is evident in the result – longer life expectancy.
Longer life expectancy is now achieved by addressing the physical problems associated with Down syndrome one by one. By identifying the issues that are more common in children with Down syndrome and screening patients – appropriate treatments are prescribed. These common problems have a remedy or cure. For example, an underactive thyroid has a remedy – medication. Celiac disease has a remedy – follow a gluten-free diet. Heart problems such as ASD and VSD have surgical remedies to treat them. People with Down syndrome still have the same triplicated chromosome 21, but there are now remedies for the physical problems associated with the overall syndrome. What do we know about what's different in their brains? Is there a remedy that can help now?
In the last 10 years an accurate mouse model (of Down syndrome), Ts65Dn, has been
developed. According to the NIH National Human Genome Research Institute, the Ts65Dn mouse mimics trisomy 21 (or Down syndrome) and exhibits many of the behavioral, learning, and physiological defects associated with the Down syndrome in humans, including mental deficits, small size, obesity, hydrocephalus and thymic defects. This model represents the latest and best improvement of Down syndrome models to facilitate research into the human condition. In the lab, researchers are now able to reveal answers or remedies for the neurological disorders associated with Down syndrome. Too often when we talk about a remedy or cure for problems in the brains of people with Down syndrome, parents and professionals alike say, “No, a cure is impossible. People with Down syndrome are the way they are – just accept it and move on!” Before you jump to that same conclusion, I encourage you to take a look at current science. Read it yourself. That is exactly what Teresa Cody did. Teresa is the mother of Neal, who has Down syndrome. At the age of 8, Neal couldn't read, write or distinguish shapes. “The main problem was he really couldn't remember. He did not ask questions. He could not verbalize,” said Teresa. “He used to pick up the pen and stare at the paper and you could see he had no idea which way to make the pen go to copy something.” Teresa studied the research. Based on Dr. Craig Garner's work at Stanford, she devised a protocol that contained compounds shown in Garner's research to target the underlying cause of learning and memory problems. Just one year later, Neal was reading at a second grade level and doing multiplication by hand. Neal's academic gains while taking the treatment protocol inspired Teresa to create the Changing Minds Foundation, a 501(c)3 non-profit organization, dedicated to improving the mental ability of persons with Down syndrome – now – with available medical treatments and proper education. A documentary film called 'Changing A Mind' tracked the progress of Neal and several other pilot protocol participants over the course of two years. You can view a trailer of the documentary on their website http://www.changingmindsfoundation.org/
Cure Down Syndrome?
By Christy Sanchez
According to Webster's Online Dictionary, the definition of cure is to remedy; to remove; to heal. We have always been told that there is no “cure” for Down syndrome. That is – we’ve been told there is no remedy for Down syndrome. But is that really true? Is that really the case in 2010? According to the National Down Syndrome Society, in 1983, the average life expectancy of a person with Down syndrome was just 25 years old. Fast forward to now - the current life expectancy averages 56 years. What caused this change in life expectancy?
Did Down syndrome change in 27 years? Did the trisomy of chromosome 21 change between 1983 and 2010? Of course not - the genetics are exactly the same now as they
were then. A baby born in 2010 with Down syndrome has the same trisomy of chromosome 21 as the baby born in 1983. So what caused the increase in life expectancy? The answer is quite simple – advances in medicine. Not one parent or professional will argue this point. It is evident in the result – longer life expectancy.
Longer life expectancy is now achieved by addressing the physical problems associated with Down syndrome one by one. By identifying the issues that are more common in children with Down syndrome and screening patients – appropriate treatments are prescribed. These common problems have a remedy or cure. For example, an underactive thyroid has a remedy – medication. Celiac disease has a remedy – follow a gluten-free diet. Heart problems such as ASD and VSD have surgical remedies to treat them. People with Down syndrome still have the same triplicated chromosome 21, but there are now remedies for the physical problems associated with the overall syndrome. What do we know about what's different in their brains? Is there a remedy that can help now?
In the last 10 years an accurate mouse model (of Down syndrome), Ts65Dn, has been
developed. According to the NIH National Human Genome Research Institute, the Ts65Dn mouse mimics trisomy 21 (or Down syndrome) and exhibits many of the behavioral, learning, and physiological defects associated with the Down syndrome in humans, including mental deficits, small size, obesity, hydrocephalus and thymic defects. This model represents the latest and best improvement of Down syndrome models to facilitate research into the human condition. In the lab, researchers are now able to reveal answers or remedies for the neurological disorders associated with Down syndrome. Too often when we talk about a remedy or cure for problems in the brains of people with Down syndrome, parents and professionals alike say, “No, a cure is impossible. People with Down syndrome are the way they are – just accept it and move on!” Before you jump to that same conclusion, I encourage you to take a look at current science. Read it yourself. That is exactly what Teresa Cody did. Teresa is the mother of Neal, who has Down syndrome. At the age of 8, Neal couldn't read, write or distinguish shapes. “The main problem was he really couldn't remember. He did not ask questions. He could not verbalize,” said Teresa. “He used to pick up the pen and stare at the paper and you could see he had no idea which way to make the pen go to copy something.” Teresa studied the research. Based on Dr. Craig Garner's work at Stanford, she devised a protocol that contained compounds shown in Garner's research to target the underlying cause of learning and memory problems. Just one year later, Neal was reading at a second grade level and doing multiplication by hand. Neal's academic gains while taking the treatment protocol inspired Teresa to create the Changing Minds Foundation, a 501(c)3 non-profit organization, dedicated to improving the mental ability of persons with Down syndrome – now – with available medical treatments and proper education. A documentary film called 'Changing A Mind' tracked the progress of Neal and several other pilot protocol participants over the course of two years. You can view a trailer of the documentary on their website http://www.changingmindsfoundation.org/
Wednesday, August 18, 2010
The Practice of Medicine
Medicine is an art, as well as, a science. As a society, we have trapped ourselves into only treating after exhaustive measurements have been made. Much of good medicine comes from observation not measuring. There is a reason it is called, the 'practice' of medicine. That is because it does take practice and that practice is observing what works and doesn't work in real life.
It seems that the Down syndrome community has trapped itself into the 'measurement hole'. We seem to be stuck in a place that does not allow us to use logic and good practice to treat our population. Why are we doing this to ourselves?
Down syndrome is so far ahead of any other disorder as far as basic research goes but we are the farthest behind in the practical application of that information. The autistic community jumps at every little morsel of information. We are stuck in 'we must wait for every detail of every system before we act mode'.
Do you realize no one knows what causes Autism? The cause of Down syndrome has been known for 60 years and now that there is a mouse model scientists can look into the details of the brain function.
The clinical observation of the 300 children and adults on the CMF protocol is that there is an amazing improvement of function including: verbal abilities, long term memory, working memory, gross motor and fine motor. What part of this do you NOT want?
Thursday, July 29, 2010
CMF Down Syndrome July Conference
Wow!!! 'Talk about Success'!!!
The CMF Down Syndrome conference was held July 23 - 24 in Houston, Texas. The conference was held to discuss the latest treatments for improving Down syndrome learning and memory and to discuss the ongoing scientific research.
Sponsored by the Changing Minds Foundation, speakers included Joanne Mothes, cognitive therapist, Missy McDonald, speech pathologist, Debbie Elder, behavior specialist, as well as, Dr. Craig Garner, Dr. Craig Heller and Dr. Dan Wetmore of Stanford University Down Syndrome Research Center.
90 attendees came from all across the US and as far away as Singapore. "This is so exciting. This is the first time since Mac was born that we have real hope", said Lexy Austin, mother of 6 year old Maclain.
For more information on the CMF protocol and the latest research go to www.changingmindsfoundation.org
The CMF Down Syndrome conference was held July 23 - 24 in Houston, Texas. The conference was held to discuss the latest treatments for improving Down syndrome learning and memory and to discuss the ongoing scientific research.
Sponsored by the Changing Minds Foundation, speakers included Joanne Mothes, cognitive therapist, Missy McDonald, speech pathologist, Debbie Elder, behavior specialist, as well as, Dr. Craig Garner, Dr. Craig Heller and Dr. Dan Wetmore of Stanford University Down Syndrome Research Center.
90 attendees came from all across the US and as far away as Singapore. "This is so exciting. This is the first time since Mac was born that we have real hope", said Lexy Austin, mother of 6 year old Maclain.
For more information on the CMF protocol and the latest research go to www.changingmindsfoundation.org
Tuesday, November 24, 2009
Balancing Brain Chemistry
The idea that there is a cure for Down syndrome bothers some people. Over the weekend, I read a few blogs that say that we cannot remove the extra chromosome from every cell, therefore there cannot be a cure for Down syndrome. It is not about removing an extra chromosome -- our medicine doesn't do that for any medical problem. We treat the symptoms.
What the latest study from Stanford University showed is that 'balancing the brain chemistry', changed how the mice could perform. Treatment or cure for Down syndrome is all about balancing the brain chemistry. But if you think about it, balancing brain chemistry is exactly what psychiatric medicine has evolved into. At one time, you went to the doctor to talk about your problems. Now, you describe a symptom and you are given a prescription to balance the chemistry. It may take some trial and error to get it right, but researchers don't have a mouse model of you. That is where Down syndrome is lucky. They have a little mouse that can help explain what is going on inside their heads.
The other argument against treatment for Down syndrome is that there have not been clinical trials using these psychiatric agents. I would point out that there have not been clinical trials using any medicine commonly given to kids and adults with Down syndrome.
For example, we use antibiotics with Down syndrome and we know they have compromised immune systems. Would we demand a clinical trial before we gave our child Amoxicillin if they had an infection? No, we would just assume that the DS child is similar enough to the average child to safely use the antibiotic.
Have there been clinical trials on the reflux medicine that we give our Down syndrome children? No. Does that stop us from treating the reflux? No.
Have there been clinical trials on ibuprofen or Tylenol that we give our Down syndrome children? No. Does that stop us from giving those medications when they are needed? No.
I looked up clinical trials in Down syndrome and found a vitamin E study, Donepezil (an Alzheimer drug), antioxidant vitamin study, and some growth and thyroid hormone studies.
So, only when we move to try to treat the source of the difficulties is a clinical trial brought up. The source of the slow processing is the brain. The source of the low motor skills is the brain. The source of the low verbal skills is the brain. The source of the poor memory is the brain.
Dr. Craig Garner at Stanford University has been working on the cause of the poor memory in Down syndrome. We now know it is a little receptor called a GABA receptor. Without any treatment the receptor is stuck in the open position in Down syndrome. With some simple chemistry, the receptor can be rebalanced to open and close more normally. This simple chemistry balances the brain chemistry.
Dr. Salahi at Stanford found that the level of norepinephrine is low in subjects with Down syndrome. A common way to restore norepinephrine levels to a more normal level is ADHD medicine.
Dr. Mobley found that the transport system for Nerve Growth Factor was broken so the nerves did not get this necessary support. But when they added it to the nerves, they restarted as if they are lying dormant. To our benefit, a medicine as common as Prozac has been shown to increase another nerve factor chemical (BDNF). This is a fairly easy way to compensate for the brain chemistry imbalance.
Balancing brain chemistry is not new. Many of our friends and loved ones struggle with depression and other brain chemistry imbalances. We understand how they can be helped with the correct medicine. The situation in Down syndrome is the exact same thing; it is a matter of balancing brain chemistry to proper levels.
What the latest study from Stanford University showed is that 'balancing the brain chemistry', changed how the mice could perform. Treatment or cure for Down syndrome is all about balancing the brain chemistry. But if you think about it, balancing brain chemistry is exactly what psychiatric medicine has evolved into. At one time, you went to the doctor to talk about your problems. Now, you describe a symptom and you are given a prescription to balance the chemistry. It may take some trial and error to get it right, but researchers don't have a mouse model of you. That is where Down syndrome is lucky. They have a little mouse that can help explain what is going on inside their heads.
The other argument against treatment for Down syndrome is that there have not been clinical trials using these psychiatric agents. I would point out that there have not been clinical trials using any medicine commonly given to kids and adults with Down syndrome.
For example, we use antibiotics with Down syndrome and we know they have compromised immune systems. Would we demand a clinical trial before we gave our child Amoxicillin if they had an infection? No, we would just assume that the DS child is similar enough to the average child to safely use the antibiotic.
Have there been clinical trials on the reflux medicine that we give our Down syndrome children? No. Does that stop us from treating the reflux? No.
Have there been clinical trials on ibuprofen or Tylenol that we give our Down syndrome children? No. Does that stop us from giving those medications when they are needed? No.
I looked up clinical trials in Down syndrome and found a vitamin E study, Donepezil (an Alzheimer drug), antioxidant vitamin study, and some growth and thyroid hormone studies.
So, only when we move to try to treat the source of the difficulties is a clinical trial brought up. The source of the slow processing is the brain. The source of the low motor skills is the brain. The source of the low verbal skills is the brain. The source of the poor memory is the brain.
Dr. Craig Garner at Stanford University has been working on the cause of the poor memory in Down syndrome. We now know it is a little receptor called a GABA receptor. Without any treatment the receptor is stuck in the open position in Down syndrome. With some simple chemistry, the receptor can be rebalanced to open and close more normally. This simple chemistry balances the brain chemistry.
Dr. Salahi at Stanford found that the level of norepinephrine is low in subjects with Down syndrome. A common way to restore norepinephrine levels to a more normal level is ADHD medicine.
Dr. Mobley found that the transport system for Nerve Growth Factor was broken so the nerves did not get this necessary support. But when they added it to the nerves, they restarted as if they are lying dormant. To our benefit, a medicine as common as Prozac has been shown to increase another nerve factor chemical (BDNF). This is a fairly easy way to compensate for the brain chemistry imbalance.
Balancing brain chemistry is not new. Many of our friends and loved ones struggle with depression and other brain chemistry imbalances. We understand how they can be helped with the correct medicine. The situation in Down syndrome is the exact same thing; it is a matter of balancing brain chemistry to proper levels.
Wednesday, June 3, 2009
Inspiration
I have been scouring the bloggers lately and love the sites I have been reading. It has inspired me to write a bit everyday.
My husband and I have 2 children, Erin 15 and Neal 11. Neal has Down syndrome which I took on as my cause. I had this crazy idea since the day he was born that through the proper medicine (chemistry) we could treat the symptoms and free him from the limitations of Down syndrome. It is now coming true. He is getting better and better. He has more and more function and abilities.
My goal is to see both my children walk out as well-educated, highly motivated adults. What do you want to see walking out of the house at 18?
My husband and I have 2 children, Erin 15 and Neal 11. Neal has Down syndrome which I took on as my cause. I had this crazy idea since the day he was born that through the proper medicine (chemistry) we could treat the symptoms and free him from the limitations of Down syndrome. It is now coming true. He is getting better and better. He has more and more function and abilities.
My goal is to see both my children walk out as well-educated, highly motivated adults. What do you want to see walking out of the house at 18?
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