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That's interesting about your doctor suggesting it!!! He must be very astute.What type of doctor is he? Did he have any suggestions as to why you should try Niacin(amide)?
Yep was not lying :-) I have clearly demonstrated with myself that it is not placedo, I do not get 90-95% however, more maybe 75%, but I have never up'd the dose to 1500mg, always 1000mg. 500mg per capsule.I have been using it for many many months, my doctor told me to try it after I described all my "issues", I spoke of it also months ago, but no one was on the XN/B3 path yet.......PS.
Guthrie, you said you took 1100mg and got very good results, it would help to know your weight, I am 210lbs and I am curious if you got better result due to a lower body weight.
That's interesting about your doctor suggesting [Niacin(amide)]!!! He must be very astute.What type of doctor is he? Did he have any suggestions as to why you should try [it]?
Quote from: Guthrie on 18/09/2011 22:50:54Has anyone on the forum done comparison tests between regular niacin and nicotinamide, to see if the latter has any effect on POIS?Or also compare Niacin with L-Histidine.http://psychology.wikia.com/wiki/HistamineSexual responseResearch has shown that histamine is released as part of the human orgasm from mast cells in the genitals. If this response is lacking this may be a sign of histapenia (histamine deficiency). In such cases, a doctor may prescribe diet supplements with folic acid and niacin (which used in conjunction can increase blood histamine levels and histamine release), or L-histidine. if L-histidine works too (prior, like niacin) then it could point towards low histamine at orgasm as a feature of POIS, if you get my drift.
Has anyone on the forum done comparison tests between regular niacin and nicotinamide, to see if the latter has any effect on POIS?
Great idea guys!I cannot believe that we are having such difficulty getting POIS sufferers to contribute.If one considers the lost income over a lifetime due to this plague, I would have thought everyone would jump at a chance to get real help.$100 is such a small sacrifice compared to what other things cost... Just Do It!!!!!!!!!!!Definitely count me in!!
Quote from: POIS-SUFFERER on 21/09/2011 06:24:06Yep was not lying :-) I have clearly demonstrated with myself that it is not placedo, I do not get 90-95% however, more maybe 75%, but I have never up'd the dose to 1500mg, always 1000mg. 500mg per capsule.I have been using it for many many months, my doctor told me to try it after I described all my "issues", I spoke of it also months ago, but no one was on the XN/B3 path yet.......PS.POIS-SUFFERER, I didn't mean to cast doubt on your initial statement! I just wanted to try it for myself as well. Can you tell us how long ago you started taking the Niacinamide? Have you been taking it every day since then?
Quote from: lauracostis on 21/09/2011 01:01:42Quote from: daveman on 20/09/2011 22:51:36There has been a BIG slowdown in donations for our NORD POIS research fund! Only a valiant few have made donations these past few months. Below, there is a very good but typical story of how a research donation to a fund like NORD can save and greatly improve lives.In fact, if it were not for Nordnurse (Stefanie) who works daily with rare disease causes, we would still be flailing around, thinking, scheming, supposing and inventing, to find a solution to the POIS problem.Haven’t we seen enough doctors who don’t take us seriously? Haven’t we seen enough to see that the only ones who care are the effected themselves? Maybe we could FIND the cure ourselves, but we would have NO cooperation in implementing it without the support of some real, peer-reviewed, scientific research.It’s beyond saying that we must support our research fund -- and must bring it to life! It is an absolutely necessary requirement. All of our effort, time, ideas and concepts are worth absolutely zero without it.What choices do we have? We can sit on our haunches, waiting for the money to magically appear. Or – like other groups with rare conditions, we can take the bull by the horns. We MUST do our part to get that basic research started!Nordnurse sent us an inspirational story recently, and we felt that it would be a good story to share with you all–”There's a physician on NORD's Medical Advisory Committee (MAC), Dr. Robert Campbell, Jr -- an angel who poses as a human being here on earth. As a pediatric orthopedic surgeon, Dr. Campbell’s special area of interest is a group of HORRIFIC disorders that begin in infancy and childhood – called “thoracic insufficiency.” Basically, the ribs do not grow, and the baby/child literally and inevitably suffocates to death.When Dr. Campbell, as a new researcher, applied for a NORD research grant for thoracic insufficiency, back in the late 1980s, he knew that he would have an uphill battle. Having had a first career as an engineer, his proposal was unusual, definitely “outside the box.” Based in solid medicine, he proposed an idea for an expandable titanium rib – a medical device for these fatally ill children.There were many applications for this one $30,000 grant, which had been donated in full by the desperate parents of a young child who was suffering terribly and facing certain death. NORD’s MAC liked Dr. Campbell’s proposal, despite knowing that it might be very difficult for him to get the type of future funding from government or private industry. Despite this concern, they trusted their appraisal of his proposal’s scientific merit, and awarded that grant to him. The rest… as they say… is history. Because of that first basic NORD study, Dr. Campbell later received major funding from industry. He has since patented the titanium expandable rib, and these children no longer die a slow, miserable death. They go on to live their lives!The expandable titanium rib is now “The Standard of Care” for children with this disorder. http://www.c-spanvideo.org/videoLibrary/clip.php?appid=598537344Dr. Campbell joined NORD’s MAC as a senior attending physician and researcher about eight years ago. He was recently honored on Capitol Hill for his unswerving work to save the lives of children with this horrible disorder (thoracic insufficiency).Fellow POIS sufferers and comrades – we NEED that basic research – and we need those funds – NOW! Our group focus must dramatically change – from speculation to ACTION. We can and should continue posting our comments, asking our questions, and sharing our experiences. But if we want a way out of the hell of POIS – which can only come from scientific research – we must walk the walk!The next grant cycle at NORD begins in March 2012. That gives us six moths to raise ~$30,655. Monthly, that equates to ~ 5,100/month. That translates into ~ $50/month from 100 donors each month.Walking the walk, taking action -- this requires EFFORT. Stefanie knows from experience at NORD that only this kind of personal effort lead to the road of a real solution.We propose a serious pledges database, where there will be a fixed time of 30 days maximum to register your pledge. This will provide more time over which to amortize any payments. Pledges may be made as a lump sum or divided over months to come. We require a minimum of donors (100), as we cannot expect a few to pay the majority. Every donor will be granted a place in a VIP area on the SMF forum where all things pertaining to the grant will be discussed, and first information will be disseminated.Upon pledging the required amount, monthly payments will be begun. Each pledge will be billed (as a formal reminder) at which point his pledge should be converted into an actual donation. Each donor will donate personally to NORD so as to (1) receive any tax deduction and/or (2) maintain anonymity (two issues not covered by other systems such as thepoint.com).This program was devised as a means to be assertive in the implementation and follow through of the research program, to avoid extra costs and limitations imposed by outside entities and to benefit, through personal management of money and donations by each individual.An individual thread has been opened on the SMF forum for a brief discussion of the details of this program at http://poiscenter.com/forums/index.php?topic=213.0 Thanks for your input. The database will be generated as soon as possible.Your friendly POIS Forum Moderators,DemografxDavemanwe should be sending requests for donations to organizations and private donors who give money. One or two outside donors could easily fund the minimum amount we need to get started. I know somewhere there are lists of organizations that allocate money to charities and medical research to people who request and solicit them. We should start soliciting these entities ASP.Laurac, excellent idea! Can you take that on as a project as we pursue our own constituency?
Quote from: daveman on 20/09/2011 22:51:36There has been a BIG slowdown in donations for our NORD POIS research fund! Only a valiant few have made donations these past few months. Below, there is a very good but typical story of how a research donation to a fund like NORD can save and greatly improve lives.In fact, if it were not for Nordnurse (Stefanie) who works daily with rare disease causes, we would still be flailing around, thinking, scheming, supposing and inventing, to find a solution to the POIS problem.Haven’t we seen enough doctors who don’t take us seriously? Haven’t we seen enough to see that the only ones who care are the effected themselves? Maybe we could FIND the cure ourselves, but we would have NO cooperation in implementing it without the support of some real, peer-reviewed, scientific research.It’s beyond saying that we must support our research fund -- and must bring it to life! It is an absolutely necessary requirement. All of our effort, time, ideas and concepts are worth absolutely zero without it.What choices do we have? We can sit on our haunches, waiting for the money to magically appear. Or – like other groups with rare conditions, we can take the bull by the horns. We MUST do our part to get that basic research started!Nordnurse sent us an inspirational story recently, and we felt that it would be a good story to share with you all–”There's a physician on NORD's Medical Advisory Committee (MAC), Dr. Robert Campbell, Jr -- an angel who poses as a human being here on earth. As a pediatric orthopedic surgeon, Dr. Campbell’s special area of interest is a group of HORRIFIC disorders that begin in infancy and childhood – called “thoracic insufficiency.” Basically, the ribs do not grow, and the baby/child literally and inevitably suffocates to death.When Dr. Campbell, as a new researcher, applied for a NORD research grant for thoracic insufficiency, back in the late 1980s, he knew that he would have an uphill battle. Having had a first career as an engineer, his proposal was unusual, definitely “outside the box.” Based in solid medicine, he proposed an idea for an expandable titanium rib – a medical device for these fatally ill children.There were many applications for this one $30,000 grant, which had been donated in full by the desperate parents of a young child who was suffering terribly and facing certain death. NORD’s MAC liked Dr. Campbell’s proposal, despite knowing that it might be very difficult for him to get the type of future funding from government or private industry. Despite this concern, they trusted their appraisal of his proposal’s scientific merit, and awarded that grant to him. The rest… as they say… is history. Because of that first basic NORD study, Dr. Campbell later received major funding from industry. He has since patented the titanium expandable rib, and these children no longer die a slow, miserable death. They go on to live their lives!The expandable titanium rib is now “The Standard of Care” for children with this disorder. http://www.c-spanvideo.org/videoLibrary/clip.php?appid=598537344Dr. Campbell joined NORD’s MAC as a senior attending physician and researcher about eight years ago. He was recently honored on Capitol Hill for his unswerving work to save the lives of children with this horrible disorder (thoracic insufficiency).Fellow POIS sufferers and comrades – we NEED that basic research – and we need those funds – NOW! Our group focus must dramatically change – from speculation to ACTION. We can and should continue posting our comments, asking our questions, and sharing our experiences. But if we want a way out of the hell of POIS – which can only come from scientific research – we must walk the walk!The next grant cycle at NORD begins in March 2012. That gives us six moths to raise ~$30,655. Monthly, that equates to ~ 5,100/month. That translates into ~ $50/month from 100 donors each month.Walking the walk, taking action -- this requires EFFORT. Stefanie knows from experience at NORD that only this kind of personal effort lead to the road of a real solution.We propose a serious pledges database, where there will be a fixed time of 30 days maximum to register your pledge. This will provide more time over which to amortize any payments. Pledges may be made as a lump sum or divided over months to come. We require a minimum of donors (100), as we cannot expect a few to pay the majority. Every donor will be granted a place in a VIP area on the SMF forum where all things pertaining to the grant will be discussed, and first information will be disseminated.Upon pledging the required amount, monthly payments will be begun. Each pledge will be billed (as a formal reminder) at which point his pledge should be converted into an actual donation. Each donor will donate personally to NORD so as to (1) receive any tax deduction and/or (2) maintain anonymity (two issues not covered by other systems such as thepoint.com).This program was devised as a means to be assertive in the implementation and follow through of the research program, to avoid extra costs and limitations imposed by outside entities and to benefit, through personal management of money and donations by each individual.An individual thread has been opened on the SMF forum for a brief discussion of the details of this program at http://poiscenter.com/forums/index.php?topic=213.0 Thanks for your input. The database will be generated as soon as possible.Your friendly POIS Forum Moderators,DemografxDavemanwe should be sending requests for donations to organizations and private donors who give money. One or two outside donors could easily fund the minimum amount we need to get started. I know somewhere there are lists of organizations that allocate money to charities and medical research to people who request and solicit them. We should start soliciting these entities ASP.
There has been a BIG slowdown in donations for our NORD POIS research fund! Only a valiant few have made donations these past few months. Below, there is a very good but typical story of how a research donation to a fund like NORD can save and greatly improve lives.In fact, if it were not for Nordnurse (Stefanie) who works daily with rare disease causes, we would still be flailing around, thinking, scheming, supposing and inventing, to find a solution to the POIS problem.Haven’t we seen enough doctors who don’t take us seriously? Haven’t we seen enough to see that the only ones who care are the effected themselves? Maybe we could FIND the cure ourselves, but we would have NO cooperation in implementing it without the support of some real, peer-reviewed, scientific research.It’s beyond saying that we must support our research fund -- and must bring it to life! It is an absolutely necessary requirement. All of our effort, time, ideas and concepts are worth absolutely zero without it.What choices do we have? We can sit on our haunches, waiting for the money to magically appear. Or – like other groups with rare conditions, we can take the bull by the horns. We MUST do our part to get that basic research started!Nordnurse sent us an inspirational story recently, and we felt that it would be a good story to share with you all–”There's a physician on NORD's Medical Advisory Committee (MAC), Dr. Robert Campbell, Jr -- an angel who poses as a human being here on earth. As a pediatric orthopedic surgeon, Dr. Campbell’s special area of interest is a group of HORRIFIC disorders that begin in infancy and childhood – called “thoracic insufficiency.” Basically, the ribs do not grow, and the baby/child literally and inevitably suffocates to death.When Dr. Campbell, as a new researcher, applied for a NORD research grant for thoracic insufficiency, back in the late 1980s, he knew that he would have an uphill battle. Having had a first career as an engineer, his proposal was unusual, definitely “outside the box.” Based in solid medicine, he proposed an idea for an expandable titanium rib – a medical device for these fatally ill children.There were many applications for this one $30,000 grant, which had been donated in full by the desperate parents of a young child who was suffering terribly and facing certain death. NORD’s MAC liked Dr. Campbell’s proposal, despite knowing that it might be very difficult for him to get the type of future funding from government or private industry. Despite this concern, they trusted their appraisal of his proposal’s scientific merit, and awarded that grant to him. The rest… as they say… is history. Because of that first basic NORD study, Dr. Campbell later received major funding from industry. He has since patented the titanium expandable rib, and these children no longer die a slow, miserable death. They go on to live their lives!The expandable titanium rib is now “The Standard of Care” for children with this disorder. http://www.c-spanvideo.org/videoLibrary/clip.php?appid=598537344Dr. Campbell joined NORD’s MAC as a senior attending physician and researcher about eight years ago. He was recently honored on Capitol Hill for his unswerving work to save the lives of children with this horrible disorder (thoracic insufficiency).Fellow POIS sufferers and comrades – we NEED that basic research – and we need those funds – NOW! Our group focus must dramatically change – from speculation to ACTION. We can and should continue posting our comments, asking our questions, and sharing our experiences. But if we want a way out of the hell of POIS – which can only come from scientific research – we must walk the walk!The next grant cycle at NORD begins in March 2012. That gives us six moths to raise ~$30,655. Monthly, that equates to ~ 5,100/month. That translates into ~ $50/month from 100 donors each month.Walking the walk, taking action -- this requires EFFORT. Stefanie knows from experience at NORD that only this kind of personal effort lead to the road of a real solution.We propose a serious pledges database, where there will be a fixed time of 30 days maximum to register your pledge. This will provide more time over which to amortize any payments. Pledges may be made as a lump sum or divided over months to come. We require a minimum of donors (100), as we cannot expect a few to pay the majority. Every donor will be granted a place in a VIP area on the SMF forum where all things pertaining to the grant will be discussed, and first information will be disseminated.Upon pledging the required amount, monthly payments will be begun. Each pledge will be billed (as a formal reminder) at which point his pledge should be converted into an actual donation. Each donor will donate personally to NORD so as to (1) receive any tax deduction and/or (2) maintain anonymity (two issues not covered by other systems such as thepoint.com).This program was devised as a means to be assertive in the implementation and follow through of the research program, to avoid extra costs and limitations imposed by outside entities and to benefit, through personal management of money and donations by each individual.An individual thread has been opened on the SMF forum for a brief discussion of the details of this program at http://poiscenter.com/forums/index.php?topic=213.0 Thanks for your input. The database will be generated as soon as possible.Your friendly POIS Forum Moderators,DemografxDaveman
Quote from: demografx on 21/09/2011 04:11:13Quote from: lauracostis on 21/09/2011 01:01:42Quote from: daveman on 20/09/2011 22:51:36There has been a BIG slowdown in donations for our NORD POIS research fund! Only a valiant few have made donations these past few months. Below, there is a very good but typical story of how a research donation to a fund like NORD can save and greatly improve lives.In fact, if it were not for Nordnurse (Stefanie) who works daily with rare disease causes, we would still be flailing around, thinking, scheming, supposing and inventing, to find a solution to the POIS problem.Havent we seen enough doctors who dont take us seriously? Havent we seen enough to see that the only ones who care are the effected themselves? Maybe we could FIND the cure ourselves, but we would have NO cooperation in implementing it without the support of some real, peer-reviewed, scientific research.Its beyond saying that we must support our research fund -- and must bring it to life! It is an absolutely necessary requirement. All of our effort, time, ideas and concepts are worth absolutely zero without it.What choices do we have? We can sit on our haunches, waiting for the money to magically appear. Or like other groups with rare conditions, we can take the bull by the horns. We MUST do our part to get that basic research started!Nordnurse sent us an inspirational story recently, and we felt that it would be a good story to share with you allThere's a physician on NORD's Medical Advisory Committee (MAC), Dr. Robert Campbell, Jr -- an angel who poses as a human being here on earth. As a pediatric orthopedic surgeon, Dr. Campbells special area of interest is a group of HORRIFIC disorders that begin in infancy and childhood called thoracic insufficiency. Basically, the ribs do not grow, and the baby/child literally and inevitably suffocates to death.When Dr. Campbell, as a new researcher, applied for a NORD research grant for thoracic insufficiency, back in the late 1980s, he knew that he would have an uphill battle. Having had a first career as an engineer, his proposal was unusual, definitely outside the box. Based in solid medicine, he proposed an idea for an expandable titanium rib a medical device for these fatally ill children.There were many applications for this one $30,000 grant, which had been donated in full by the desperate parents of a young child who was suffering terribly and facing certain death. NORDs MAC liked Dr. Campbells proposal, despite knowing that it might be very difficult for him to get the type of future funding from government or private industry. Despite this concern, they trusted their appraisal of his proposals scientific merit, and awarded that grant to him. The rest as they say is history. Because of that first basic NORD study, Dr. Campbell later received major funding from industry. He has since patented the titanium expandable rib, and these children no longer die a slow, miserable death. They go on to live their lives!The expandable titanium rib is now The Standard of Care for children with this disorder. http://www.c-spanvideo.org/videoLibrary/clip.php?appid=598537344Dr. Campbell joined NORDs MAC as a senior attending physician and researcher about eight years ago. He was recently honored on Capitol Hill for his unswerving work to save the lives of children with this horrible disorder (thoracic insufficiency).Fellow POIS sufferers and comrades we NEED that basic research and we need those funds NOW! Our group focus must dramatically change from speculation to ACTION. We can and should continue posting our comments, asking our questions, and sharing our experiences. But if we want a way out of the hell of POIS which can only come from scientific research we must walk the walk!The next grant cycle at NORD begins in March 2012. That gives us six moths to raise ~$30,655. Monthly, that equates to ~ 5,100/month. That translates into ~ $50/month from 100 donors each month.Walking the walk, taking action -- this requires EFFORT. Stefanie knows from experience at NORD that only this kind of personal effort lead to the road of a real solution.We propose a serious pledges database, where there will be a fixed time of 30 days maximum to register your pledge. This will provide more time over which to amortize any payments. Pledges may be made as a lump sum or divided over months to come. We require a minimum of donors (100), as we cannot expect a few to pay the majority. Every donor will be granted a place in a VIP area on the SMF forum where all things pertaining to the grant will be discussed, and first information will be disseminated.Upon pledging the required amount, monthly payments will be begun. Each pledge will be billed (as a formal reminder) at which point his pledge should be converted into an actual donation. Each donor will donate personally to NORD so as to (1) receive any tax deduction and/or (2) maintain anonymity (two issues not covered by other systems such as thepoint.com).This program was devised as a means to be assertive in the implementation and follow through of the research program, to avoid extra costs and limitations imposed by outside entities and to benefit, through personal management of money and donations by each individual.An individual thread has been opened on the SMF forum for a brief discussion of the details of this program at http://poiscenter.com/forums/index.php?topic=213.0 Thanks for your input. The database will be generated as soon as possible.Your friendly POIS Forum Moderators,DemografxDavemanwe should be sending requests for donations to organizations and private donors who give money. One or two outside donors could easily fund the minimum amount we need to get started. I know somewhere there are lists of organizations that allocate money to charities and medical research to people who request and solicit them. We should start soliciting these entities ASP.Laurac, excellent idea! Can you take that on as a project as we pursue our own constituency?I would but I start a clinical rotation on monday and I will barely have a enough time to complete regular activities of daily living.
Quote from: lauracostis on 21/09/2011 01:01:42Quote from: daveman on 20/09/2011 22:51:36There has been a BIG slowdown in donations for our NORD POIS research fund! Only a valiant few have made donations these past few months. Below, there is a very good but typical story of how a research donation to a fund like NORD can save and greatly improve lives.In fact, if it were not for Nordnurse (Stefanie) who works daily with rare disease causes, we would still be flailing around, thinking, scheming, supposing and inventing, to find a solution to the POIS problem.Havent we seen enough doctors who dont take us seriously? Havent we seen enough to see that the only ones who care are the effected themselves? Maybe we could FIND the cure ourselves, but we would have NO cooperation in implementing it without the support of some real, peer-reviewed, scientific research.Its beyond saying that we must support our research fund -- and must bring it to life! It is an absolutely necessary requirement. All of our effort, time, ideas and concepts are worth absolutely zero without it.What choices do we have? We can sit on our haunches, waiting for the money to magically appear. Or like other groups with rare conditions, we can take the bull by the horns. We MUST do our part to get that basic research started!Nordnurse sent us an inspirational story recently, and we felt that it would be a good story to share with you allThere's a physician on NORD's Medical Advisory Committee (MAC), Dr. Robert Campbell, Jr -- an angel who poses as a human being here on earth. As a pediatric orthopedic surgeon, Dr. Campbells special area of interest is a group of HORRIFIC disorders that begin in infancy and childhood called thoracic insufficiency. Basically, the ribs do not grow, and the baby/child literally and inevitably suffocates to death.When Dr. Campbell, as a new researcher, applied for a NORD research grant for thoracic insufficiency, back in the late 1980s, he knew that he would have an uphill battle. Having had a first career as an engineer, his proposal was unusual, definitely outside the box. Based in solid medicine, he proposed an idea for an expandable titanium rib a medical device for these fatally ill children.There were many applications for this one $30,000 grant, which had been donated in full by the desperate parents of a young child who was suffering terribly and facing certain death. NORDs MAC liked Dr. Campbells proposal, despite knowing that it might be very difficult for him to get the type of future funding from government or private industry. Despite this concern, they trusted their appraisal of his proposals scientific merit, and awarded that grant to him. The rest as they say is history. Because of that first basic NORD study, Dr. Campbell later received major funding from industry. He has since patented the titanium expandable rib, and these children no longer die a slow, miserable death. They go on to live their lives!The expandable titanium rib is now The Standard of Care for children with this disorder. http://www.c-spanvideo.org/videoLibrary/clip.php?appid=598537344Dr. Campbell joined NORDs MAC as a senior attending physician and researcher about eight years ago. He was recently honored on Capitol Hill for his unswerving work to save the lives of children with this horrible disorder (thoracic insufficiency).Fellow POIS sufferers and comrades we NEED that basic research and we need those funds NOW! Our group focus must dramatically change from speculation to ACTION. We can and should continue posting our comments, asking our questions, and sharing our experiences. But if we want a way out of the hell of POIS which can only come from scientific research we must walk the walk!The next grant cycle at NORD begins in March 2012. That gives us six moths to raise ~$30,655. Monthly, that equates to ~ 5,100/month. That translates into ~ $50/month from 100 donors each month.Walking the walk, taking action -- this requires EFFORT. Stefanie knows from experience at NORD that only this kind of personal effort lead to the road of a real solution.We propose a serious pledges database, where there will be a fixed time of 30 days maximum to register your pledge. This will provide more time over which to amortize any payments. Pledges may be made as a lump sum or divided over months to come. We require a minimum of donors (100), as we cannot expect a few to pay the majority. Every donor will be granted a place in a VIP area on the SMF forum where all things pertaining to the grant will be discussed, and first information will be disseminated.Upon pledging the required amount, monthly payments will be begun. Each pledge will be billed (as a formal reminder) at which point his pledge should be converted into an actual donation. Each donor will donate personally to NORD so as to (1) receive any tax deduction and/or (2) maintain anonymity (two issues not covered by other systems such as thepoint.com).This program was devised as a means to be assertive in the implementation and follow through of the research program, to avoid extra costs and limitations imposed by outside entities and to benefit, through personal management of money and donations by each individual.An individual thread has been opened on the SMF forum for a brief discussion of the details of this program at http://poiscenter.com/forums/index.php?topic=213.0 Thanks for your input. The database will be generated as soon as possible.Your friendly POIS Forum Moderators,DemografxDavemanwe should be sending requests for donations to organizations and private donors who give money. One or two outside donors could easily fund the minimum amount we need to get started. I know somewhere there are lists of organizations that allocate money to charities and medical research to people who request and solicit them. We should start soliciting these entities ASP.Laurac, excellent idea! Can you take that on as a project as we pursue our own constituency?
Quote from: daveman on 20/09/2011 22:51:36There has been a BIG slowdown in donations for our NORD POIS research fund! Only a valiant few have made donations these past few months. Below, there is a very good but typical story of how a research donation to a fund like NORD can save and greatly improve lives.In fact, if it were not for Nordnurse (Stefanie) who works daily with rare disease causes, we would still be flailing around, thinking, scheming, supposing and inventing, to find a solution to the POIS problem.Havent we seen enough doctors who dont take us seriously? Havent we seen enough to see that the only ones who care are the effected themselves? Maybe we could FIND the cure ourselves, but we would have NO cooperation in implementing it without the support of some real, peer-reviewed, scientific research.Its beyond saying that we must support our research fund -- and must bring it to life! It is an absolutely necessary requirement. All of our effort, time, ideas and concepts are worth absolutely zero without it.What choices do we have? We can sit on our haunches, waiting for the money to magically appear. Or like other groups with rare conditions, we can take the bull by the horns. We MUST do our part to get that basic research started!Nordnurse sent us an inspirational story recently, and we felt that it would be a good story to share with you allThere's a physician on NORD's Medical Advisory Committee (MAC), Dr. Robert Campbell, Jr -- an angel who poses as a human being here on earth. As a pediatric orthopedic surgeon, Dr. Campbells special area of interest is a group of HORRIFIC disorders that begin in infancy and childhood called thoracic insufficiency. Basically, the ribs do not grow, and the baby/child literally and inevitably suffocates to death.When Dr. Campbell, as a new researcher, applied for a NORD research grant for thoracic insufficiency, back in the late 1980s, he knew that he would have an uphill battle. Having had a first career as an engineer, his proposal was unusual, definitely outside the box. Based in solid medicine, he proposed an idea for an expandable titanium rib a medical device for these fatally ill children.There were many applications for this one $30,000 grant, which had been donated in full by the desperate parents of a young child who was suffering terribly and facing certain death. NORDs MAC liked Dr. Campbells proposal, despite knowing that it might be very difficult for him to get the type of future funding from government or private industry. Despite this concern, they trusted their appraisal of his proposals scientific merit, and awarded that grant to him. The rest as they say is history. Because of that first basic NORD study, Dr. Campbell later received major funding from industry. He has since patented the titanium expandable rib, and these children no longer die a slow, miserable death. They go on to live their lives!The expandable titanium rib is now The Standard of Care for children with this disorder. http://www.c-spanvideo.org/videoLibrary/clip.php?appid=598537344Dr. Campbell joined NORDs MAC as a senior attending physician and researcher about eight years ago. He was recently honored on Capitol Hill for his unswerving work to save the lives of children with this horrible disorder (thoracic insufficiency).Fellow POIS sufferers and comrades we NEED that basic research and we need those funds NOW! Our group focus must dramatically change from speculation to ACTION. We can and should continue posting our comments, asking our questions, and sharing our experiences. But if we want a way out of the hell of POIS which can only come from scientific research we must walk the walk!The next grant cycle at NORD begins in March 2012. That gives us six moths to raise ~$30,655. Monthly, that equates to ~ 5,100/month. That translates into ~ $50/month from 100 donors each month.Walking the walk, taking action -- this requires EFFORT. Stefanie knows from experience at NORD that only this kind of personal effort lead to the road of a real solution.We propose a serious pledges database, where there will be a fixed time of 30 days maximum to register your pledge. This will provide more time over which to amortize any payments. Pledges may be made as a lump sum or divided over months to come. We require a minimum of donors (100), as we cannot expect a few to pay the majority. Every donor will be granted a place in a VIP area on the SMF forum where all things pertaining to the grant will be discussed, and first information will be disseminated.Upon pledging the required amount, monthly payments will be begun. Each pledge will be billed (as a formal reminder) at which point his pledge should be converted into an actual donation. Each donor will donate personally to NORD so as to (1) receive any tax deduction and/or (2) maintain anonymity (two issues not covered by other systems such as thepoint.com).This program was devised as a means to be assertive in the implementation and follow through of the research program, to avoid extra costs and limitations imposed by outside entities and to benefit, through personal management of money and donations by each individual.An individual thread has been opened on the SMF forum for a brief discussion of the details of this program at http://poiscenter.com/forums/index.php?topic=213.0 Thanks for your input. The database will be generated as soon as possible.Your friendly POIS Forum Moderators,DemografxDavemanwe should be sending requests for donations to organizations and private donors who give money. One or two outside donors could easily fund the minimum amount we need to get started. I know somewhere there are lists of organizations that allocate money to charities and medical research to people who request and solicit them. We should start soliciting these entities ASP.
There has been a BIG slowdown in donations for our NORD POIS research fund! Only a valiant few have made donations these past few months. Below, there is a very good but typical story of how a research donation to a fund like NORD can save and greatly improve lives.In fact, if it were not for Nordnurse (Stefanie) who works daily with rare disease causes, we would still be flailing around, thinking, scheming, supposing and inventing, to find a solution to the POIS problem.Havent we seen enough doctors who dont take us seriously? Havent we seen enough to see that the only ones who care are the effected themselves? Maybe we could FIND the cure ourselves, but we would have NO cooperation in implementing it without the support of some real, peer-reviewed, scientific research.Its beyond saying that we must support our research fund -- and must bring it to life! It is an absolutely necessary requirement. All of our effort, time, ideas and concepts are worth absolutely zero without it.What choices do we have? We can sit on our haunches, waiting for the money to magically appear. Or like other groups with rare conditions, we can take the bull by the horns. We MUST do our part to get that basic research started!Nordnurse sent us an inspirational story recently, and we felt that it would be a good story to share with you allThere's a physician on NORD's Medical Advisory Committee (MAC), Dr. Robert Campbell, Jr -- an angel who poses as a human being here on earth. As a pediatric orthopedic surgeon, Dr. Campbells special area of interest is a group of HORRIFIC disorders that begin in infancy and childhood called thoracic insufficiency. Basically, the ribs do not grow, and the baby/child literally and inevitably suffocates to death.When Dr. Campbell, as a new researcher, applied for a NORD research grant for thoracic insufficiency, back in the late 1980s, he knew that he would have an uphill battle. Having had a first career as an engineer, his proposal was unusual, definitely outside the box. Based in solid medicine, he proposed an idea for an expandable titanium rib a medical device for these fatally ill children.There were many applications for this one $30,000 grant, which had been donated in full by the desperate parents of a young child who was suffering terribly and facing certain death. NORDs MAC liked Dr. Campbells proposal, despite knowing that it might be very difficult for him to get the type of future funding from government or private industry. Despite this concern, they trusted their appraisal of his proposals scientific merit, and awarded that grant to him. The rest as they say is history. Because of that first basic NORD study, Dr. Campbell later received major funding from industry. He has since patented the titanium expandable rib, and these children no longer die a slow, miserable death. They go on to live their lives!The expandable titanium rib is now The Standard of Care for children with this disorder. http://www.c-spanvideo.org/videoLibrary/clip.php?appid=598537344Dr. Campbell joined NORDs MAC as a senior attending physician and researcher about eight years ago. He was recently honored on Capitol Hill for his unswerving work to save the lives of children with this horrible disorder (thoracic insufficiency).Fellow POIS sufferers and comrades we NEED that basic research and we need those funds NOW! Our group focus must dramatically change from speculation to ACTION. We can and should continue posting our comments, asking our questions, and sharing our experiences. But if we want a way out of the hell of POIS which can only come from scientific research we must walk the walk!The next grant cycle at NORD begins in March 2012. That gives us six moths to raise ~$30,655. Monthly, that equates to ~ 5,100/month. That translates into ~ $50/month from 100 donors each month.Walking the walk, taking action -- this requires EFFORT. Stefanie knows from experience at NORD that only this kind of personal effort lead to the road of a real solution.We propose a serious pledges database, where there will be a fixed time of 30 days maximum to register your pledge. This will provide more time over which to amortize any payments. Pledges may be made as a lump sum or divided over months to come. We require a minimum of donors (100), as we cannot expect a few to pay the majority. Every donor will be granted a place in a VIP area on the SMF forum where all things pertaining to the grant will be discussed, and first information will be disseminated.Upon pledging the required amount, monthly payments will be begun. Each pledge will be billed (as a formal reminder) at which point his pledge should be converted into an actual donation. Each donor will donate personally to NORD so as to (1) receive any tax deduction and/or (2) maintain anonymity (two issues not covered by other systems such as thepoint.com).This program was devised as a means to be assertive in the implementation and follow through of the research program, to avoid extra costs and limitations imposed by outside entities and to benefit, through personal management of money and donations by each individual.An individual thread has been opened on the SMF forum for a brief discussion of the details of this program at http://poiscenter.com/forums/index.php?topic=213.0 Thanks for your input. The database will be generated as soon as possible.Your friendly POIS Forum Moderators,DemografxDaveman
Thanks, CC! Maybe Laurac knows?
The next grant cycle at NORD begins in March 2012. That gives us six moths to raise ~$30,655.
Quote from: daveman link=topic=6576.msg36[quote author=daveman on 20/09/2011 22:51:36The next grant cycle at NORD begins in March 2012. That gives us six moths to raise ~$30,655.I'm confused. I thought we had years to raise that money.
Quote from: Vincent Marcus on 22/09/2011 23:33:55Quote from: daveman link=topic=6576.msg36[quote author=daveman on 20/09/2011 22:51:36The next grant cycle at NORD begins in March 2012. That gives us six moths to raise ~$30,655.I'm confused. I thought we had years to raise that money.We don't loose anything if we don't make the minimum by the time mentioned (other than time). The grants are processed once a year in March. If we don't make it this year it will be a year more....and a year more .... and a year more etc.Personally I don't understand why there's so little interest. (with all respect and gratitude to those who have shown their seriousness already)We will NOT find a cure without the grant. This means until we do the research we can spend all the time in the world here for nothing.It might be argued that we have found testosterone, niacin, fenugreek, desensitization, discovered many posibilities, but we still can't go to a doctor and have him take us seriously. We could find the cure, and it won't do us a darn bit of good if we can't convince the doctors that they must treat us with it.It's like buying a wind-up toy and not winding it up. It's like having a million dollars and living in a shack with a mattress made of money. Do we understand this?There are many of us that don't believe the auto-immune theory, there have been no other proper studies. We have nothing. Do we understand that?If we carry on like this, what does it serve us to discuss ANY theory? Do we understand this?We're talking $50 per month for 6 months. We can take out a small loan, sell a couple of things, work overtime. Or we will just carry on as we have for 4.5 years.