Down Syndrome Achieves is a Down syndrome organization pushing for more NIH funding for DS research. It would be great if we came out in force to show our support. There is good information available with the little funding DS has had....... but imagine the possiblities.
The squeaky wheel gets the grease!!! Let's squeak!!
LIVE Web Conference:
The Abandonment of DownSyndrome Research
Thursday, Feb. 17
7PM
Next Thursday, Feb. 17, at 7PM, nearly 100 families from as far away as CA, AL, VA, WI, SD, IL, FL, TX, OK, MN, WA, OR, and other states across the country will participate in our LIVE web conference: The Abandonment of Down Syndrome Research.
Whether we choose to acknowledge it or not, constant failures in Down syndrome research affects us all and prevents us from achieving the type of future that we all hope for our loved ones with DS.
This web conference will not be easy for anyone who loves someone with DS. It is a cold hard anguishing look at why DS research has failed for more than 100 years to make breathrough discoveries that would vastly improve the quality of life and health for all of our infants, toddlers, teens and adults swith DS. But there is a way forward...
Take 6o-minutes to learn the facts, and learn more about how and why your help is needed to turn this disastrous trend around. As a parent, grandparent or advocate, I urge you to please join the web conference as well. I hope you will take the time to join us. Click here to register now!
Lito Ramirez
Founder of Down Syndrome Achieves
Showing posts with label cognitive research. Show all posts
Showing posts with label cognitive research. Show all posts
Monday, February 14, 2011
Tuesday, January 11, 2011
Mining For Down syndrome Data
Down syndrome is a complex genetic condition. In order to help everyone understand how the extra chromosome affects the body, I am going to post a series of blogs on a number of specific subjects. I love to research and read the latest findings.....and by writing about them, I can help all of you learn about the latest research without having to go find the information yourselves. It will force me to put the pieces of information together into some logical order.
I read somewhere that if you want to really learn something, try teaching it to someone else! So, that's what I am going to do.
This is the most exciting time for Down syndrome! The scientific breakthroughs are coming faster and faster. We need these great researchers, but who is putting the pieces together? I think of myself as a data miner. Somebody needs to dig out these precious nuggets of information and link them together. Stay tuned for a year of understandable science.
I read somewhere that if you want to really learn something, try teaching it to someone else! So, that's what I am going to do.
This is the most exciting time for Down syndrome! The scientific breakthroughs are coming faster and faster. We need these great researchers, but who is putting the pieces together? I think of myself as a data miner. Somebody needs to dig out these precious nuggets of information and link them together. Stay tuned for a year of understandable science.
Thursday, December 30, 2010
PETITION REQUEST:
Today is the day I need you to step forward with a small act to support Down Syndrome research. No money, just your name and words are needed.
PETITION REQUEST:
We are on the verge of revolutionary human clinical FDA trials for medication to raise learning, memory and communication in Down Syndrome. These trials are expensive, more than charity can handle, and more than pharma companies will take on when they are unsure if a market exists. We can show them a market exists and influence the National Institute of Health to help bridge the funding gap NOW by having you join a petition and by presenting your commentary!
There is a major grant request under review at the NIH to initially fund a start up pharmaceutical's FDA trial of a medication developed by Stanford DS researchers that has improved learning performance in DS mice and shown to be usable in humans. We MUST get this funded.
In 2009, the NIH provided 18 million dollars for DS research. DS affects about 400,000 Americans. In contrast, autism (which affects 560,000) got 132 million in NIH money, MS (affecting 400,000) got 137 million, and Parkinsons got 162 million. Why? Because the families of people with these issues are very active in lobbying for this and being involved at the federal level, and we have not been. The view from the govt and pharma is that we don't care about developing the medications that are within reach that could really change our kids outcomes in life, so they focus elsewhere. Time for things to change!
So join me today in saying this to the NIH decision makers:
We, the members of the Down Syndrome community, strongly urge support for the development of FDA approved medication to raise learning, memory, and communication for those with DS. We particularly support this grant application: the NINDS Cooperative Program in Translational Research - Small Business Awards (SBIR [U44]), Principal Investigator Elizabeth Moyer, PhD.
Your steps:
1) email me to add your name and email address to the petition. just say "add" with your name and email address
2) if possible, take 5 minutes and email me a few sentences showing your support--include your name, address, and telephone #. This will be far more powerful than just the petition. I will consolidate comments and give to the head of the grant application process.
3) call or email me if you need more info
Time is critical in this process, so please act now! We want to deliver the petition by January 4th!!! And please forward to all your friends and family.
Merry Christmas and Happy New Year!
Thank your for taking the time to help. The squeaky wheel gets the grease. Help us get the grease!
Sincerely,
Teresa Cody
email me at changingmindsfoundation@gmail.com
PETITION REQUEST:
We are on the verge of revolutionary human clinical FDA trials for medication to raise learning, memory and communication in Down Syndrome. These trials are expensive, more than charity can handle, and more than pharma companies will take on when they are unsure if a market exists. We can show them a market exists and influence the National Institute of Health to help bridge the funding gap NOW by having you join a petition and by presenting your commentary!
There is a major grant request under review at the NIH to initially fund a start up pharmaceutical's FDA trial of a medication developed by Stanford DS researchers that has improved learning performance in DS mice and shown to be usable in humans. We MUST get this funded.
In 2009, the NIH provided 18 million dollars for DS research. DS affects about 400,000 Americans. In contrast, autism (which affects 560,000) got 132 million in NIH money, MS (affecting 400,000) got 137 million, and Parkinsons got 162 million. Why? Because the families of people with these issues are very active in lobbying for this and being involved at the federal level, and we have not been. The view from the govt and pharma is that we don't care about developing the medications that are within reach that could really change our kids outcomes in life, so they focus elsewhere. Time for things to change!
So join me today in saying this to the NIH decision makers:
We, the members of the Down Syndrome community, strongly urge support for the development of FDA approved medication to raise learning, memory, and communication for those with DS. We particularly support this grant application: the NINDS Cooperative Program in Translational Research - Small Business Awards (SBIR [U44]), Principal Investigator Elizabeth Moyer, PhD.
Your steps:
1) email me to add your name and email address to the petition. just say "add" with your name and email address
2) if possible, take 5 minutes and email me a few sentences showing your support--include your name, address, and telephone #. This will be far more powerful than just the petition. I will consolidate comments and give to the head of the grant application process.
3) call or email me if you need more info
Time is critical in this process, so please act now! We want to deliver the petition by January 4th!!! And please forward to all your friends and family.
Merry Christmas and Happy New Year!
Thank your for taking the time to help. The squeaky wheel gets the grease. Help us get the grease!
Sincerely,
Teresa Cody
email me at changingmindsfoundation@gmail.com
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!!!!
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
Tuesday, August 3, 2010
Press Release written by Patricia Almeida
The Changing Minds Foundation (CMF) held its first Conference on July 23-24, in Houston, TX, to discuss available treatments for the different intellectual disabilities that affect persons with Down syndrome and to present the ongoing research at Stanford University Down Syndrome Center.
Various testimonies of families and professionals, who work with those using the Changing Minds Protocol, were presented, as well as, findings from researchers at Stanford University that investigate drugs to enhance memory and learning in individuals with Down syndrome by testing on the DS mouse model.
The Changing Minds Protocol was established by Teresa Cody DDS, the mother of a child with DS. Teresa worked with other mothers around the world via email and they researched the Internet to find an array of scientific studies. The studies using DS mouse models showed improvement in the mouse's ability to learn and remember. The protocol, that uses FDA approved medicines includes, B 12, Folic Acid, Ginkgo Biloba, Prozac (Fluoxetine), Phosphatidylcholine, Body Bio Balanced Oil and Focalin XR (or another ADHD medication).
Changing Minds Foundation estimates that around 200 families use the CMF protocol worldwide, or at least parts of it, and the large majority of these families have observed great advances in their child's development with no appreciable side effects. According to some presenters, some children have started the medicines as young as 3 months old and have been showing signs of development of a typical child. Pictures and videos of the treated children were shown to illustrate improvements.
Joanne Mothes, a teacher with 38 years of experience tutors 30 pupils with Down syndrome in Columbus Ohio. 14 of them are on the CMF protocol and 16 are not. She said that the difference between the two groups is remarkable. The title of her talk was 'Draw a line in the Sand'. According to Joanne, children that use the protocol are more attentive, more verbal, learn faster, and remember what they learn. She also said she noticed good results comparing the students to themselves, before and after starting the CMF protocol.
Research:
Scientists from Stanford University Down Syndrome Research Center, Craig Heller, PhD., Craig Garner, PhD, and Dan Wetmore, PhD talked about their research using PTZ (Pentylenetetrazol) and how that drug had similar effects to Ginkgo Biloba, which is currently being used in the CMF protocol. It acts on the GABA receptors of the cell, controlling the balance between excitation and inhibition, aiming to regulate these 2 stimuli, that are out of balance in mice and presumably individuals with Down syndrome. As the researchers described, too much inhibition can lead to retardation and even coma, while excess excitation can cause hyperactivity to seizures. Drs. Heller, Garner and Wetmore all affirmed that this research is advanced, but it will take time and funds to carry out clinical trials on PTZ. At this time, they estimate that it will take 10 years to get FDA approval.
The Stanford team, as well as, other participants of the conference, stressed the need for families to engage in fundraising and applying political pressure in order to implement more research. They also pointed out that it is crucial that the medical community, especially pediatric, psychiatric and neurological physicians be informed and get involved by working with patients that wish to use the treatments already available.
More information: http://www.changingmindsfoundation.org
http://dsresearch.stanford.edu
Various testimonies of families and professionals, who work with those using the Changing Minds Protocol, were presented, as well as, findings from researchers at Stanford University that investigate drugs to enhance memory and learning in individuals with Down syndrome by testing on the DS mouse model.
The Changing Minds Protocol was established by Teresa Cody DDS, the mother of a child with DS. Teresa worked with other mothers around the world via email and they researched the Internet to find an array of scientific studies. The studies using DS mouse models showed improvement in the mouse's ability to learn and remember. The protocol, that uses FDA approved medicines includes, B 12, Folic Acid, Ginkgo Biloba, Prozac (Fluoxetine), Phosphatidylcholine, Body Bio Balanced Oil and Focalin XR (or another ADHD medication).
Changing Minds Foundation estimates that around 200 families use the CMF protocol worldwide, or at least parts of it, and the large majority of these families have observed great advances in their child's development with no appreciable side effects. According to some presenters, some children have started the medicines as young as 3 months old and have been showing signs of development of a typical child. Pictures and videos of the treated children were shown to illustrate improvements.
Joanne Mothes, a teacher with 38 years of experience tutors 30 pupils with Down syndrome in Columbus Ohio. 14 of them are on the CMF protocol and 16 are not. She said that the difference between the two groups is remarkable. The title of her talk was 'Draw a line in the Sand'. According to Joanne, children that use the protocol are more attentive, more verbal, learn faster, and remember what they learn. She also said she noticed good results comparing the students to themselves, before and after starting the CMF protocol.
Research:
Scientists from Stanford University Down Syndrome Research Center, Craig Heller, PhD., Craig Garner, PhD, and Dan Wetmore, PhD talked about their research using PTZ (Pentylenetetrazol) and how that drug had similar effects to Ginkgo Biloba, which is currently being used in the CMF protocol. It acts on the GABA receptors of the cell, controlling the balance between excitation and inhibition, aiming to regulate these 2 stimuli, that are out of balance in mice and presumably individuals with Down syndrome. As the researchers described, too much inhibition can lead to retardation and even coma, while excess excitation can cause hyperactivity to seizures. Drs. Heller, Garner and Wetmore all affirmed that this research is advanced, but it will take time and funds to carry out clinical trials on PTZ. At this time, they estimate that it will take 10 years to get FDA approval.
The Stanford team, as well as, other participants of the conference, stressed the need for families to engage in fundraising and applying political pressure in order to implement more research. They also pointed out that it is crucial that the medical community, especially pediatric, psychiatric and neurological physicians be informed and get involved by working with patients that wish to use the treatments already available.
More information: http://www.changingmindsfoundation.org
http://dsresearch.stanford.edu
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