Re: Fw: DS Clinical Trials- From Dr Craig Garner

July 7, 2008

Carol, If a way is figured out to fundraise, Let me

know. I would love to contribute.

B

--- Carol in IL wrote:

> I wrote to Dr. Garner and asked if he could please

> tell us about the clinical trials, research and

> prozac and he was kind enough to reply and allow us

> to post this to the list!!!

>

> I think it's fantastic that he took the time to keep

> us all informed!

>

> Carol in IL

>

> AIM doihavtasay1 GigaTribe doihavtasay

> Mom to seven including , 7 with TOF,

> AVcanal, GERD, LS, Asthma, subglottal stenosis, and

> DS.

>

> My problem is not how I look. It's how you see me.

>

> Join our Down Syndrome information group -

>

http://health.groups.yahoo.com/group/DownSyndromeInfoExchange/

>

> Listen to oldest dd's music

> http://www.myspace.com/vennamusic

>

> ----- Forwarded Message ----

>

> To: Carol in IL ; and

> Tim Cashion

> Cc: Kathy Ratkiewicz

> Sent: Thursday, July 3, 2008 8:59:00 PM

> Subject: DS Clinical Trials

>

> Hi Carol and Kathy,

>

> Thank you for your email. I hope I can clarify

> questions and concerns from your online community.

>

> First, I want to reiterate that I cannot advise any

> therapy for individuals with Down syndrome until

> they have been shown to be safe and effective in an

> approved study. Of course we are hopeful that

> therapies will be proven safe and effective as soon

> as possible, but for legal reasons we have to leave

> official advice to doctors and the FDA.

>

> Concerning a clinical trial we are most certainly

> not at a standstill. In fact, my efforts to start a

> trial require daily effort. We are aware of

> Cody's project, and we are inspired by the potential

> that our laboratory finding will transfer to the

> clinic. We are working to make a clinical trial a

> reality quickly -- a matter of months not years.

> Our team includes physicians, psychiatrists,

> neurologists, and scientists at Stanford and

> elsewhere who share my hope and are working with us

> to find the best possible drug formulation that can

> be used safely and effectively in individuals with

> Down syndrome.

>

> As you can imagine, there are many administrative,

> organizational, and financial hurdles. Our biggest

> challenge is fundraising. Unfortunately, drug

> companies consider the risks too great and the

> potential payoff too small to fund a trial at this

> early stage, so we are working to raise funds

> through philanthropy. We have estimated the costs of

> a trial, and the required funds are manageable, but

> we will need help from your community -- and beyond

> -- to raise these funds.

>

> Many of the details of the trial are still being

> worked out at this time. We have many options for

> drug treatment strategies under consideration. With

> regard to Prozac, a decision has not been made

> whether it will be included in the first trial. When

> our plans and protocol are finalized, we will

> certainly distribute those details to you and your

> community. Sadly, due to our many time commitments,

> we cannot update our websites as frequently as we

> would like. However, we are in the midst of a site

> redesign that we hope will greatly increase the rate

> of new content, including information on any trials.

>

> Best,

>

> Craig

>

> Craig C. Garner, Ph.D.

> Professor of Psychiatry

> & Behavioral Sciences

> Pritzker Laboratory

> 1201 Welch Road, Room P106

> Stanford, CA 94305-5485

>

> cgarner@...

> http://cgarnerlab.stanford.edu

>

July 7, 2008

Carol, If a way is figured out to fundraise, Let me

know. I would love to contribute.

B

--- Carol in IL wrote:

> I wrote to Dr. Garner and asked if he could please

> tell us about the clinical trials, research and

> prozac and he was kind enough to reply and allow us

> to post this to the list!!!

>

> I think it's fantastic that he took the time to keep

> us all informed!

>

> Carol in IL

>

> AIM doihavtasay1 GigaTribe doihavtasay

> Mom to seven including , 7 with TOF,

> AVcanal, GERD, LS, Asthma, subglottal stenosis, and

> DS.

>

> My problem is not how I look. It's how you see me.

>

> Join our Down Syndrome information group -

>

http://health.groups.yahoo.com/group/DownSyndromeInfoExchange/

>

> Listen to oldest dd's music

> http://www.myspace.com/vennamusic

>

> ----- Forwarded Message ----

>

> To: Carol in IL ; and

> Tim Cashion

> Cc: Kathy Ratkiewicz

> Sent: Thursday, July 3, 2008 8:59:00 PM

> Subject: DS Clinical Trials

>

> Hi Carol and Kathy,

>

> Thank you for your email. I hope I can clarify

> questions and concerns from your online community.

>

> First, I want to reiterate that I cannot advise any

> therapy for individuals with Down syndrome until

> they have been shown to be safe and effective in an

> approved study. Of course we are hopeful that

> therapies will be proven safe and effective as soon

> as possible, but for legal reasons we have to leave

> official advice to doctors and the FDA.

>

> Concerning a clinical trial we are most certainly

> not at a standstill. In fact, my efforts to start a

> trial require daily effort. We are aware of

> Cody's project, and we are inspired by the potential

> that our laboratory finding will transfer to the

> clinic. We are working to make a clinical trial a

> reality quickly -- a matter of months not years.

> Our team includes physicians, psychiatrists,

> neurologists, and scientists at Stanford and

> elsewhere who share my hope and are working with us

> to find the best possible drug formulation that can

> be used safely and effectively in individuals with

> Down syndrome.

>

> As you can imagine, there are many administrative,

> organizational, and financial hurdles. Our biggest

> challenge is fundraising. Unfortunately, drug

> companies consider the risks too great and the

> potential payoff too small to fund a trial at this

> early stage, so we are working to raise funds

> through philanthropy. We have estimated the costs of

> a trial, and the required funds are manageable, but

> we will need help from your community -- and beyond

> -- to raise these funds.

>

> Many of the details of the trial are still being

> worked out at this time. We have many options for

> drug treatment strategies under consideration. With

> regard to Prozac, a decision has not been made

> whether it will be included in the first trial. When

> our plans and protocol are finalized, we will

> certainly distribute those details to you and your

> community. Sadly, due to our many time commitments,

> we cannot update our websites as frequently as we

> would like. However, we are in the midst of a site

> redesign that we hope will greatly increase the rate

> of new content, including information on any trials.

>

> Best,

>

> Craig

>

> Craig C. Garner, Ph.D.

> Professor of Psychiatry

> & Behavioral Sciences

> Pritzker Laboratory

> 1201 Welch Road, Room P106

> Stanford, CA 94305-5485

>

> cgarner@...

> http://cgarnerlab.stanford.edu

>

July 7, 2008

You most certainly have the right to think what you please but to say many parents are apathetic regarding their children IS just an opinion. To me it bothers me when people speak of someone with DS as having a disease that needs to be cured. Trisha is not a guinea pig or an experiment and I choose not to treat her as such. I do not fill her up with the latest craze of supplements or send her to therapy to the point that she no longer has a life, It's not only about accepting her the way she is but it's also about learning from her as well because of the way she is. There is much we could learn from our children if only we took the time instead of spending most of our time trying to fix them. Did anyone ever stop to think maybe our children are here because they are here to teach us the basic of life like, slow down, accept people as they are not as we would want them to be or even maybe to help us learn how to deal with old age? Do I want to give Trisha opportunities to learn and to grow, of course I do but what I do not want to do is change who she is. Trisha is a gift from God just like her brother was a gift from God why should one try to perfect something that just maybe is already perfect but because we think if someone is different they need to be fixed just maybe it's us who needs to be fixed. It's not our children who need the fixing it's the rest of us because it's the so called normal people who will abuse them, take advantage of them now please explain why I would want my child to be normal again? I'd much rather be spending my time finding supplements for the "normal people" that will help them to be accepting, kind, compassionate, non-abusive etc. That's where the work is really needed. With all the high blood pressure, heart disease, cancers obesity and so forth it seems to me we ought to work on ourselves before trying to fix someone else. I wonder what goes on in the heads of our kids and I wonder if they think we can't love them as they are because we are always trying to fix them and make them what we deem better but just maybe they are ok and happy with who they are and how they are. People used to say the children with DS were always happy but now that isn't true any more so I have to wonder were they always happy or at least happier before we decided they needed fixing? Have you ever asked yourself what is it that they are smiling at when we see nothing that we think would make them smile? Teaching them, making sure they are healthy is a parent's job just like it is for any of our children regardless of their abilities but when we as parents get so gungho over it that they no longer have lives beyond their disabilities all in the name of helping them I have to wonder why we are so fired up crazy to fix something when we ourselves are probably more damaged and in need of fixing ourselves. This of course is only my opinion and please don't say I am apathetic or have my head in the ground because like everyone else I am entitled to my opinion and to raise my child as best as I can just like I did for my son who is supposedly "typical". I want her to have a good life just like I want for my son but that doesn't mean a good life can only be obtained if she is "normal". We all have a purpose in life just because we don't always know what that purpose is for each of us doesn't mean that only those who are "normal" have a purpose. Sometimes I think Trisha's purpose is to drive me crazy and then I remember oh no that was her brother's job and then I look at her and know that whatever her purpose is in life she will actually do better reaching it than I will because she still has the ability to think with an open mind and not be judgmental or cynical as some of us have become. She takes her time which drives me crazy but would probably help lower my blood pressure if I just followed her lead. :-)

Do not ever think I am not passionate about my child because I am but I just think sometimes when we fix things now we don't know what we might have broken for the future. It's just like with the vaccines, what at one time was thought to be a fix is now today considered a huge mistake and what we do today as a fix people 10-20 or more years from now might just think how barbaric we are. We don't know what drugs can do to our bodies as we age and by the time our kids are our age we won't be there to say I'm sorry if our fixes actually broke something else. JMHO.

Carol

Trishasmom

It seems to me that many parents with children with DS are rather apathetic about their child's conditionGas prices getting you down? Search AOL Autos for fuel-efficient used cars.

July 7, 2008

You most certainly have the right to think what you please but to say many parents are apathetic regarding their children IS just an opinion. To me it bothers me when people speak of someone with DS as having a disease that needs to be cured. Trisha is not a guinea pig or an experiment and I choose not to treat her as such. I do not fill her up with the latest craze of supplements or send her to therapy to the point that she no longer has a life, It's not only about accepting her the way she is but it's also about learning from her as well because of the way she is. There is much we could learn from our children if only we took the time instead of spending most of our time trying to fix them. Did anyone ever stop to think maybe our children are here because they are here to teach us the basic of life like, slow down, accept people as they are not as we would want them to be or even maybe to help us learn how to deal with old age? Do I want to give Trisha opportunities to learn and to grow, of course I do but what I do not want to do is change who she is. Trisha is a gift from God just like her brother was a gift from God why should one try to perfect something that just maybe is already perfect but because we think if someone is different they need to be fixed just maybe it's us who needs to be fixed. It's not our children who need the fixing it's the rest of us because it's the so called normal people who will abuse them, take advantage of them now please explain why I would want my child to be normal again? I'd much rather be spending my time finding supplements for the "normal people" that will help them to be accepting, kind, compassionate, non-abusive etc. That's where the work is really needed. With all the high blood pressure, heart disease, cancers obesity and so forth it seems to me we ought to work on ourselves before trying to fix someone else. I wonder what goes on in the heads of our kids and I wonder if they think we can't love them as they are because we are always trying to fix them and make them what we deem better but just maybe they are ok and happy with who they are and how they are. People used to say the children with DS were always happy but now that isn't true any more so I have to wonder were they always happy or at least happier before we decided they needed fixing? Have you ever asked yourself what is it that they are smiling at when we see nothing that we think would make them smile? Teaching them, making sure they are healthy is a parent's job just like it is for any of our children regardless of their abilities but when we as parents get so gungho over it that they no longer have lives beyond their disabilities all in the name of helping them I have to wonder why we are so fired up crazy to fix something when we ourselves are probably more damaged and in need of fixing ourselves. This of course is only my opinion and please don't say I am apathetic or have my head in the ground because like everyone else I am entitled to my opinion and to raise my child as best as I can just like I did for my son who is supposedly "typical". I want her to have a good life just like I want for my son but that doesn't mean a good life can only be obtained if she is "normal". We all have a purpose in life just because we don't always know what that purpose is for each of us doesn't mean that only those who are "normal" have a purpose. Sometimes I think Trisha's purpose is to drive me crazy and then I remember oh no that was her brother's job and then I look at her and know that whatever her purpose is in life she will actually do better reaching it than I will because she still has the ability to think with an open mind and not be judgmental or cynical as some of us have become. She takes her time which drives me crazy but would probably help lower my blood pressure if I just followed her lead. :-)

Do not ever think I am not passionate about my child because I am but I just think sometimes when we fix things now we don't know what we might have broken for the future. It's just like with the vaccines, what at one time was thought to be a fix is now today considered a huge mistake and what we do today as a fix people 10-20 or more years from now might just think how barbaric we are. We don't know what drugs can do to our bodies as we age and by the time our kids are our age we won't be there to say I'm sorry if our fixes actually broke something else. JMHO.

Carol

Trishasmom

It seems to me that many parents with children with DS are rather apathetic about their child's conditionGas prices getting you down? Search AOL Autos for fuel-efficient used cars.

July 7, 2008

You most certainly have the right to think what you please but to say many parents are apathetic regarding their children IS just an opinion. To me it bothers me when people speak of someone with DS as having a disease that needs to be cured. Trisha is not a guinea pig or an experiment and I choose not to treat her as such. I do not fill her up with the latest craze of supplements or send her to therapy to the point that she no longer has a life, It's not only about accepting her the way she is but it's also about learning from her as well because of the way she is. There is much we could learn from our children if only we took the time instead of spending most of our time trying to fix them. Did anyone ever stop to think maybe our children are here because they are here to teach us the basic of life like, slow down, accept people as they are not as we would want them to be or even maybe to help us learn how to deal with old age? Do I want to give Trisha opportunities to learn and to grow, of course I do but what I do not want to do is change who she is. Trisha is a gift from God just like her brother was a gift from God why should one try to perfect something that just maybe is already perfect but because we think if someone is different they need to be fixed just maybe it's us who needs to be fixed. It's not our children who need the fixing it's the rest of us because it's the so called normal people who will abuse them, take advantage of them now please explain why I would want my child to be normal again? I'd much rather be spending my time finding supplements for the "normal people" that will help them to be accepting, kind, compassionate, non-abusive etc. That's where the work is really needed. With all the high blood pressure, heart disease, cancers obesity and so forth it seems to me we ought to work on ourselves before trying to fix someone else. I wonder what goes on in the heads of our kids and I wonder if they think we can't love them as they are because we are always trying to fix them and make them what we deem better but just maybe they are ok and happy with who they are and how they are. People used to say the children with DS were always happy but now that isn't true any more so I have to wonder were they always happy or at least happier before we decided they needed fixing? Have you ever asked yourself what is it that they are smiling at when we see nothing that we think would make them smile? Teaching them, making sure they are healthy is a parent's job just like it is for any of our children regardless of their abilities but when we as parents get so gungho over it that they no longer have lives beyond their disabilities all in the name of helping them I have to wonder why we are so fired up crazy to fix something when we ourselves are probably more damaged and in need of fixing ourselves. This of course is only my opinion and please don't say I am apathetic or have my head in the ground because like everyone else I am entitled to my opinion and to raise my child as best as I can just like I did for my son who is supposedly "typical". I want her to have a good life just like I want for my son but that doesn't mean a good life can only be obtained if she is "normal". We all have a purpose in life just because we don't always know what that purpose is for each of us doesn't mean that only those who are "normal" have a purpose. Sometimes I think Trisha's purpose is to drive me crazy and then I remember oh no that was her brother's job and then I look at her and know that whatever her purpose is in life she will actually do better reaching it than I will because she still has the ability to think with an open mind and not be judgmental or cynical as some of us have become. She takes her time which drives me crazy but would probably help lower my blood pressure if I just followed her lead. :-)

Do not ever think I am not passionate about my child because I am but I just think sometimes when we fix things now we don't know what we might have broken for the future. It's just like with the vaccines, what at one time was thought to be a fix is now today considered a huge mistake and what we do today as a fix people 10-20 or more years from now might just think how barbaric we are. We don't know what drugs can do to our bodies as we age and by the time our kids are our age we won't be there to say I'm sorry if our fixes actually broke something else. JMHO.

Carol

Trishasmom

It seems to me that many parents with children with DS are rather apathetic about their child's conditionGas prices getting you down? Search AOL Autos for fuel-efficient used cars.

July 7, 2008

excuse me, it's not always about being motivated. Just maybe they did their research and formed their decisions from that research. Just because you feel it is the way doesn't mean we all have to feel the same way. I do lots of research and have been doing so for 16 years now and so far none of it has made me want to fill my child up with the latest craze. Do what you need for yourself and your child but don't try to make other feel like they aren't motivated or don't care as strongly just because they take a different approach after all if we all did the same things life would just be a cookie cutter world and very boring to say the least. I gave my child a "simple" b vitamin that caused her so much distress now why would I want to try something else on the off chance it might help. This is not a roulette game it's her life and I don't have the right to experiment with it.

Carol

Carol,I certainly understand your feelings - but I still maintain that if asafe and effective treatment can be provided for these children, thenit ought to be done. Perhaps not for your daughter, but for those whowould choose such a treatment. I also understand your concern aboutthe drugs, I think that we're all concerned - but we need to moveahead. It seems to me that the general public with normal childrenare more sympathetic and enthusiastic about change for these childrenthan many parents of children with DS. I'm sorry, I just don'tunderstand what motivates them. I've always looked for answers andI'm not always the most balanced in that aspect, but I just don'tunderstand parents who won't even try Ginkgo Biloba. They're notmotivated to even do that much or research it.Also, remember that people with DS are susceptable to AD at an early age.Marsha>> You most certainly have the right to think what you please but tosay many > parents are apathetic regarding their children IS just an opinion. To me it > bothers me when people speak of someone with DS as having a diseasethat needs > to be cured. Trisha is not a guinea pig or an experiment and I choose not > to treat her as such. I do not fill her up with the latest craze of > supplements or send her to therapy to the point that she no longerhas a life, It's > not only about accepting her the way she is but it's also about learning from > her as well because of the way she is. There is much we couldlearn from our > children if only we took the time instead of spending most of ourtime trying > to fix them. Did anyone ever stop to think maybe our children arehere > because they are here to teach us the basic of life like, slow down, accept > people as they are not as we would want them to be or even maybe tohelp us learn > how to deal with old age? Do I want to give Trisha opportunitiesto learn > and to grow, of course I do but what I do not want to do is changewho she is. > Trisha is a gift from God just like her brother was a gift from Godwhy > should one try to perfect something that just maybe is alreadyperfect but > because we think if someone is different they need to be fixed justmaybe it's us > who needs to be fixed. It's not our children who need the fixingit's the > rest of us because it's the so called normal people who will abusethem, take > advantage of them now please explain why I would want my child tobe normal > again? I'd much rather be spending my time finding supplements forthe "normal > people" that will help them to be accepting, kind, compassionate,non-abusive > etc. That's where the work is really needed. With all the highblood > pressure, heart disease, cancers obesity and so forth it seems tome we ought to > work on ourselves before trying to fix someone else. I wonder whatgoes on > in the heads of our kids and I wonder if they think we can't lovethem as they > are because we are always trying to fix them and make them what wedeem > better but just maybe they are ok and happy with who they are andhow they are. > People used to say the children with DS were always happy but nowthat isn't > true any more so I have to wonder were they always happy or atleast happier > before we decided they needed fixing? Have you ever asked yourselfwhat is > it that they are smiling at when we see nothing that we think wouldmake them > smile? Teaching them, making sure they are healthy is a parent'sjob just > like it is for any of our children regardless of their abilitiesbut when we > as parents get so gungho over it that they no longer have livesbeyond their > disabilities all in the name of helping them I have to wonder whywe are so > fired up crazy to fix something when we ourselves are probably moredamaged and > in need of fixing ourselves. This of course is only my opinion andplease > don't say I am apathetic or have my head in the ground because likeeveryone > else I am entitled to my opinion and to raise my child as best as Ican just > like I did for my son who is supposedly "typical". I want her tohave a good > life just like I want for my son but that doesn't mean a good lifecan only > be obtained if she is "normal". We all have a purpose in life justbecause we > don't always know what that purpose is for each of us doesn't meanthat only > those who are "normal" have a purpose. Sometimes I think Trisha'spurpose > is to drive me crazy and then I remember oh no that was herbrother's job and > then I look at her and know that whatever her purpose is in lifeshe will > actually do better reaching it than I will because she still hasthe ability to > think with an open mind and not be judgmental or cynical as some ofus have > become. She takes her time which drives me crazy but wouldprobably help > lower my blood pressure if I just followed her lead. :-)> > Do not ever think I am not passionate about my child because I ambut I just > think sometimes when we fix things now we don't know what we might have > broken for the future. It's just like with the vaccines, what atone time was > thought to be a fix is now today considered a huge mistake and whatwe do today > as a fix people 10-20 or more years from now might just think howbarbaric > we are. We don't know what drugs can do to our bodies as we ageand by the > time our kids are our age we won't be there to say I'm sorry if ourfixes > actually broke something else. JMHO. > > Carol> Trishasmom> > > > > It seems to me that many parents with children with DS are rather > apathetic about their child's condition> > > > > **************Gas prices getting you down? Search AOL Autos for > fuel-efficient used cars. (http://autos.aol.com/used?ncid=aolaut00050000000007)> Gas prices getting you down? Search AOL Autos for fuel-efficient used cars.

July 7, 2008

excuse me, it's not always about being motivated. Just maybe they did their research and formed their decisions from that research. Just because you feel it is the way doesn't mean we all have to feel the same way. I do lots of research and have been doing so for 16 years now and so far none of it has made me want to fill my child up with the latest craze. Do what you need for yourself and your child but don't try to make other feel like they aren't motivated or don't care as strongly just because they take a different approach after all if we all did the same things life would just be a cookie cutter world and very boring to say the least. I gave my child a "simple" b vitamin that caused her so much distress now why would I want to try something else on the off chance it might help. This is not a roulette game it's her life and I don't have the right to experiment with it.

Carol

Carol,I certainly understand your feelings - but I still maintain that if asafe and effective treatment can be provided for these children, thenit ought to be done. Perhaps not for your daughter, but for those whowould choose such a treatment. I also understand your concern aboutthe drugs, I think that we're all concerned - but we need to moveahead. It seems to me that the general public with normal childrenare more sympathetic and enthusiastic about change for these childrenthan many parents of children with DS. I'm sorry, I just don'tunderstand what motivates them. I've always looked for answers andI'm not always the most balanced in that aspect, but I just don'tunderstand parents who won't even try Ginkgo Biloba. They're notmotivated to even do that much or research it.Also, remember that people with DS are susceptable to AD at an early age.Marsha>> You most certainly have the right to think what you please but tosay many > parents are apathetic regarding their children IS just an opinion. To me it > bothers me when people speak of someone with DS as having a diseasethat needs > to be cured. Trisha is not a guinea pig or an experiment and I choose not > to treat her as such. I do not fill her up with the latest craze of > supplements or send her to therapy to the point that she no longerhas a life, It's > not only about accepting her the way she is but it's also about learning from > her as well because of the way she is. There is much we couldlearn from our > children if only we took the time instead of spending most of ourtime trying > to fix them. Did anyone ever stop to think maybe our children arehere > because they are here to teach us the basic of life like, slow down, accept > people as they are not as we would want them to be or even maybe tohelp us learn > how to deal with old age? Do I want to give Trisha opportunitiesto learn > and to grow, of course I do but what I do not want to do is changewho she is. > Trisha is a gift from God just like her brother was a gift from Godwhy > should one try to perfect something that just maybe is alreadyperfect but > because we think if someone is different they need to be fixed justmaybe it's us > who needs to be fixed. It's not our children who need the fixingit's the > rest of us because it's the so called normal people who will abusethem, take > advantage of them now please explain why I would want my child tobe normal > again? I'd much rather be spending my time finding supplements forthe "normal > people" that will help them to be accepting, kind, compassionate,non-abusive > etc. That's where the work is really needed. With all the highblood > pressure, heart disease, cancers obesity and so forth it seems tome we ought to > work on ourselves before trying to fix someone else. I wonder whatgoes on > in the heads of our kids and I wonder if they think we can't lovethem as they > are because we are always trying to fix them and make them what wedeem > better but just maybe they are ok and happy with who they are andhow they are. > People used to say the children with DS were always happy but nowthat isn't > true any more so I have to wonder were they always happy or atleast happier > before we decided they needed fixing? Have you ever asked yourselfwhat is > it that they are smiling at when we see nothing that we think wouldmake them > smile? Teaching them, making sure they are healthy is a parent'sjob just > like it is for any of our children regardless of their abilitiesbut when we > as parents get so gungho over it that they no longer have livesbeyond their > disabilities all in the name of helping them I have to wonder whywe are so > fired up crazy to fix something when we ourselves are probably moredamaged and > in need of fixing ourselves. This of course is only my opinion andplease > don't say I am apathetic or have my head in the ground because likeeveryone > else I am entitled to my opinion and to raise my child as best as Ican just > like I did for my son who is supposedly "typical". I want her tohave a good > life just like I want for my son but that doesn't mean a good lifecan only > be obtained if she is "normal". We all have a purpose in life justbecause we > don't always know what that purpose is for each of us doesn't meanthat only > those who are "normal" have a purpose. Sometimes I think Trisha'spurpose > is to drive me crazy and then I remember oh no that was herbrother's job and > then I look at her and know that whatever her purpose is in lifeshe will > actually do better reaching it than I will because she still hasthe ability to > think with an open mind and not be judgmental or cynical as some ofus have > become. She takes her time which drives me crazy but wouldprobably help > lower my blood pressure if I just followed her lead. :-)> > Do not ever think I am not passionate about my child because I ambut I just > think sometimes when we fix things now we don't know what we might have > broken for the future. It's just like with the vaccines, what atone time was > thought to be a fix is now today considered a huge mistake and whatwe do today > as a fix people 10-20 or more years from now might just think howbarbaric > we are. We don't know what drugs can do to our bodies as we ageand by the > time our kids are our age we won't be there to say I'm sorry if ourfixes > actually broke something else. JMHO. > > Carol> Trishasmom> > > > > It seems to me that many parents with children with DS are rather > apathetic about their child's condition> > > > > **************Gas prices getting you down? Search AOL Autos for > fuel-efficient used cars. (http://autos.aol.com/used?ncid=aolaut00050000000007)> Gas prices getting you down? Search AOL Autos for fuel-efficient used cars.

July 7, 2008

There is a big difference between fixing and helping. I had a friend who decided her child needed to be fixed and she almost killed him with all her experimentations with on supplement after another. See, if one doesn't go with the in crowd look how they jump out and start with the old cliches that if it's ok to fix one thing why not the other. I don't see where anyone said it was ok or not ok we just said we feel differently.

Carol

I donâ€™t understand why it is ok to *fix* a childâ€™s heart defect, treat hypothyroidism,leukemia,, etc, yet we balk at treatments to improve cognition. What is sacred about cognition that it is *bad* to do what you can to improve it if possible? Why do therapy at all if we â€œaccept our kids as they areâ€? Isnâ€™t therapy â€˜fixingâ€™ kids? Isnâ€™t school??

If a personâ€™s IQ could be improved a few points, that might be the difference between them having to live in a group home/assisted care and being able to live independently.

KathyR

From: DownSyndromeInfoExchange [mailto:DownSyndromeInfoExchange ] On Behalf Of CsvillarsaolSent: Monday, July 07, 2008 9:20 PMTo: DownSyndromeInfoExchange Subject: Re: [DownSyndromeInfoExchange] Re: Fw: DS Clinical Trials- From Dr Craig Garner

You most certainly have the right to think what you please but to say many parents are apathetic regarding their children IS just an opinion. To me it bothers me when people speak of someone with DS as having a disease that needs to be cured. Trisha is not a guinea pig or an experiment and I choose not to treat her as such. I do not fill her up with the latest craze of supplements or send her to therapy to the point that she no longer has a life, It's not only about accepting her the way she is but it's also about learning from her as well because of the way she is. There is much we could learn from our children if only we took the time instead of spending most of our time trying to fix them. Did anyone ever stop to think maybe our children are here because they are here to teach us the basic of life like, slow down, accept people as they are not as we would want them to be or even maybe to help us learn how to deal with old age? Do I want to give Trisha opportunities to learn and to grow, of course I do but what I do not want to do is change who she is. Trisha is a gift from God just like her brother was a gift from God why should one try to perfect something that just maybe is already perfect but because we think if someone is different they need to be fixed just maybe it's us who needs to be fixed. It's not our children who need the fixing it's the rest of us because it's the so called normal people who will abuse them, take advantage of them now please explain why I would want my child to be normal again? I'd much rather be spending my time finding supplements for the "normal people" that will help them to be accepting, kind, compassionate, non-abusive etc. That's where the work is really needed. With all the high blood pressure, heart disease, cancers obesity and so forth it seems to me we ought to work on ourselves before trying to fix someone else. I wonder what goes on in the heads of our kids and I wonder if they think we can't love them as they are because we are always trying to fix them and make them what we deem better but just maybe they are ok and happy with who they are and how they are. People used to say the children with DS were always happy but now that isn't true any more so I have to wonder were they always happy or at least happier before we decided they needed fixing? Have you ever asked yourself what is it that they are smiling at when we see nothing that we think would make them smile? Teaching them, making sure they are healthy is a parent's job just like it is for any of our children regardless of their abilities but when we as parents get so gungho over it that they no longer have lives beyond their disabilities all in the name of helping them I have to wonder why we are so fired up crazy to fix something when we ourselves are probably more damaged and in need of fixing ourselves. This of course is only my opinion and please don't say I am apathetic or have my head in the ground because like everyone else I am entitled to my opinion and to raise my child as best as I can just like I did for my son who is supposedly "typical". I want her to have a good life just like I want for my son but that doesn't mean a good life can only be obtained if she is "normal". We all have a purpose in life just because we don't always know what that purpose is for each of us doesn't mean that only those who are "normal" have a purpose. Sometimes I think Trisha's purpose is to drive me crazy and then I remember oh no that was her brother's job and then I look at her and know that whatever her purpose is in life she will actually do better reaching it than I will because she still has the ability to think with an open mind and not be judgmental or cynical as some of us have become. She takes her time which drives me crazy but would probably help lower my blood pressure if I just followed her lead. :-)

Do not ever think I am not passionate about my child because I am but I just think sometimes when we fix things now we don't know what we might have broken for the future. It's just like with the vaccines, what at one time was thought to be a fix is now today considered a huge mistake and what we do today as a fix people 10-20 or more years from now might just think how barbaric we are. We don't know what drugs can do to our bodies as we age and by the time our kids are our age we won't be there to say I'm sorry if our fixes actually broke something else. JMHO.

Carol

Trishasmom

In a message dated 7/7/2008 8:32:46 P.M. Eastern Daylight Time, mscheitlinverizon (DOT) net writes:

It seems to me that many parents with children with DS are rather apathetic about their child's condition

Gas prices getting you down? Search AOL Autos for fuel-efficient used cars.

July 7, 2008

There is a big difference between fixing and helping. I had a friend who decided her child needed to be fixed and she almost killed him with all her experimentations with on supplement after another. See, if one doesn't go with the in crowd look how they jump out and start with the old cliches that if it's ok to fix one thing why not the other. I don't see where anyone said it was ok or not ok we just said we feel differently.

Carol

I donâ€™t understand why it is ok to *fix* a childâ€™s heart defect, treat hypothyroidism,leukemia,, etc, yet we balk at treatments to improve cognition. What is sacred about cognition that it is *bad* to do what you can to improve it if possible? Why do therapy at all if we â€œaccept our kids as they areâ€? Isnâ€™t therapy â€˜fixingâ€™ kids? Isnâ€™t school??

If a personâ€™s IQ could be improved a few points, that might be the difference between them having to live in a group home/assisted care and being able to live independently.

KathyR

From: DownSyndromeInfoExchange [mailto:DownSyndromeInfoExchange ] On Behalf Of CsvillarsaolSent: Monday, July 07, 2008 9:20 PMTo: DownSyndromeInfoExchange Subject: Re: [DownSyndromeInfoExchange] Re: Fw: DS Clinical Trials- From Dr Craig Garner

You most certainly have the right to think what you please but to say many parents are apathetic regarding their children IS just an opinion. To me it bothers me when people speak of someone with DS as having a disease that needs to be cured. Trisha is not a guinea pig or an experiment and I choose not to treat her as such. I do not fill her up with the latest craze of supplements or send her to therapy to the point that she no longer has a life, It's not only about accepting her the way she is but it's also about learning from her as well because of the way she is. There is much we could learn from our children if only we took the time instead of spending most of our time trying to fix them. Did anyone ever stop to think maybe our children are here because they are here to teach us the basic of life like, slow down, accept people as they are not as we would want them to be or even maybe to help us learn how to deal with old age? Do I want to give Trisha opportunities to learn and to grow, of course I do but what I do not want to do is change who she is. Trisha is a gift from God just like her brother was a gift from God why should one try to perfect something that just maybe is already perfect but because we think if someone is different they need to be fixed just maybe it's us who needs to be fixed. It's not our children who need the fixing it's the rest of us because it's the so called normal people who will abuse them, take advantage of them now please explain why I would want my child to be normal again? I'd much rather be spending my time finding supplements for the "normal people" that will help them to be accepting, kind, compassionate, non-abusive etc. That's where the work is really needed. With all the high blood pressure, heart disease, cancers obesity and so forth it seems to me we ought to work on ourselves before trying to fix someone else. I wonder what goes on in the heads of our kids and I wonder if they think we can't love them as they are because we are always trying to fix them and make them what we deem better but just maybe they are ok and happy with who they are and how they are. People used to say the children with DS were always happy but now that isn't true any more so I have to wonder were they always happy or at least happier before we decided they needed fixing? Have you ever asked yourself what is it that they are smiling at when we see nothing that we think would make them smile? Teaching them, making sure they are healthy is a parent's job just like it is for any of our children regardless of their abilities but when we as parents get so gungho over it that they no longer have lives beyond their disabilities all in the name of helping them I have to wonder why we are so fired up crazy to fix something when we ourselves are probably more damaged and in need of fixing ourselves. This of course is only my opinion and please don't say I am apathetic or have my head in the ground because like everyone else I am entitled to my opinion and to raise my child as best as I can just like I did for my son who is supposedly "typical". I want her to have a good life just like I want for my son but that doesn't mean a good life can only be obtained if she is "normal". We all have a purpose in life just because we don't always know what that purpose is for each of us doesn't mean that only those who are "normal" have a purpose. Sometimes I think Trisha's purpose is to drive me crazy and then I remember oh no that was her brother's job and then I look at her and know that whatever her purpose is in life she will actually do better reaching it than I will because she still has the ability to think with an open mind and not be judgmental or cynical as some of us have become. She takes her time which drives me crazy but would probably help lower my blood pressure if I just followed her lead. :-)

Do not ever think I am not passionate about my child because I am but I just think sometimes when we fix things now we don't know what we might have broken for the future. It's just like with the vaccines, what at one time was thought to be a fix is now today considered a huge mistake and what we do today as a fix people 10-20 or more years from now might just think how barbaric we are. We don't know what drugs can do to our bodies as we age and by the time our kids are our age we won't be there to say I'm sorry if our fixes actually broke something else. JMHO.

Carol

Trishasmom

In a message dated 7/7/2008 8:32:46 P.M. Eastern Daylight Time, mscheitlinverizon (DOT) net writes:

It seems to me that many parents with children with DS are rather apathetic about their child's condition

Gas prices getting you down? Search AOL Autos for fuel-efficient used cars.

July 7, 2008

Carol,

I would welcome more discussion about fundraising. I think that this

type of research could appeal to many in the Bible Belt. Think of the

impart of a treatment on the abortion rate. A lot of folks would feel

good about supporting a clinical trial that might save babies.

Perhaps several " form letters " could be put together on this listserve

to assist parents on this list-serve in asking for funds.

This brings up another question: most of you belong to a local DS

support group. Does your group help support DS cognitive research

in any way? Do the other parents in your group show interest in it?

It seems to me that many parents with children with DS are rather

apathetic about their child's condition. It's wonderful to accept the

disability, but if a treatment can be designed for DS, then it ought

to be done. We should feel an obligation to make it possible through

our own funds and by encouraging others to see the need.

Marsha

> >

> > I wrote to Dr. Garner and asked if he could please tell us about

> the clinical trials, research and prozac and he was kind enough to

> reply and allow us to post this to the list!!!

> >

> > I think it's fantastic that he took the time to keep us all

> informed!

> >

> > Carol in IL

> >

> > AIM doihavtasay1 GigaTribe doihavtasay

> > Mom to seven including , 7 with TOF, AVcanal, GERD, LS,

> Asthma, subglottal stenosis, and DS.

> >

> > My problem is not how I look. It's how you see me.

> >

> > Join our Down Syndrome information group -

> > http://health. groups.yahoo. com/group/ DownSyndromeInfo Exchange/

> >

> > Listen to oldest dd's music http://www.myspace. com/vennamusic

> >

> > ----- Forwarded Message ----

> > From: Craig C. Garner <cgarner@ >

> > To: Carol in IL <ps1272000@ ..>; and Tim Cashion <tac@>

> > Cc: Kathy Ratkiewicz <Kathy_R@ >

> > Sent: Thursday, July 3, 2008 8:59:00 PM

> > Subject: DS Clinical Trials

> >

> > Hi Carol and Kathy,

> >

> > Thank you for your email. I hope I can clarify questions and

> concerns from your online community.

> >

> > First, I want to reiterate that I cannot advise any therapy for

> individuals with Down syndrome until they have been shown to be safe

> and effective in an approved study. Of course we are hopeful that

> therapies will be proven safe and effective as soon as possible, but

> for legal reasons we have to leave official advice to doctors and the

> FDA.

> >

> > Concerning a clinical trial we are most certainly not at a

> standstill. In fact, my efforts to start a trial require daily

> effort. We are aware of Cody's project, and we are inspired by

> the potential that our laboratory finding will transfer to the

> clinic. We are working to make a clinical trial a reality quickly --

> a matter of months not years. Our team includes physicians,

> psychiatrists, neurologists, and scientists at Stanford and elsewhere

> who share my hope and are working with us to find the best possible

> drug formulation that can be used safely and effectively in

> individuals with Down syndrome.

> >

> > As you can imagine, there are many administrative, organizational,

> and financial hurdles. Our biggest challenge is fundraising.

> Unfortunately, drug companies consider the risks too great and the

> potential payoff too small to fund a trial at this early stage, so we

> are working to raise funds through philanthropy. We have estimated

> the costs of a trial, and the required funds are manageable, but we

> will need help from your community -- and beyond -- to raise these

> funds.

> >

> > Many of the details of the trial are still being worked out at this

> time. We have many options for drug treatment strategies under

> consideration. With regard to Prozac, a decision has not been made

> whether it will be included in the first trial. When our plans and

> protocol are finalized, we will certainly distribute those details to

> you and your community. Sadly, due to our many time commitments, we

> cannot update our websites as frequently as we would like. However,

> we are in the midst of a site redesign that we hope will greatly

> increase the rate of new content, including information on any

> trials.

> >

> > Best,

> >

> > Craig

> >

> > Craig C. Garner, Ph.D.

> > Professor of Psychiatry

> > & Behavioral Sciences

> > Pritzker Laboratory

> > 1201 Welch Road, Room P106

> > Stanford, CA 94305-5485

> >

> > cgarner@

> > http://cgarnerlab. stanford. edu

> >

>

July 7, 2008