by eleni » Mon Nov 23, 2009 12:30 am
Sorry to let this thread go so long without commenting. As Sara mentioned, I was traveling on business. There are a number of issues at play here, but I will say that this thread has prompted me to contact MoD to express our concerns (again) and I'll let you know what response we get.
The MoD is on a quest to reduce preterm births and because roughly half of them are from unknown causes, a good deal of the research they fund is to get at the root causes and potential prevention of those "unknowns." Preeclampsia is - at last count - the number one KNOWN cause of preterm birth, around 15%. The March of Dimes does fund *some* research in preeclampsia, recognizing its role in this problem, and was an active participant in a PE workshop at NIH 3 years ago (I was a presenter there on behalf of the PF). I will also find out the current status and amount of that research, relative to the overall pot of money being spent in this area. I believe that if you are donating to them, you should understand how much of your dollar is targeted to the issues you care about.
They also willingly worked with us to ensure the info about PE on their website was accurate and they must still link to our website because our website analytics show redirects from the MoD website. The Preeclampsia Foundation is considered an "alliance" member of the MoD - you can read more about what that means [url="http://www.marchofdimes.com/21222_5765.asp"] here [/url]. We have not formally reviewed their website in well over a year to determine if their PE information is still accurate and we are appropriately referenced. If somebody has some time and would like to help do a quick audit so that we can suggest new edits or additions, we'd be most grateful.
Beyond that, this is indeed a tricky area for them to navigate as we clearly confuse the "preterm delivery is bad" message. As we all know, in preeclampsia and related hypertensive disorders of pregnancy, preterm delivery is sometimes the healthiest option for the mother and even the baby. The challenge is getting a clear diagnosis and being able to accurately predict when delivery should happen to prevent or at least lessen adverse outcomes. A too early or unneccessary delivery can be just as bad as a too late delivery. That said, I hardly think they'd be happy with reducing the preterm birth rate only to have the stillbirth rate shoot up.
We have always contended they should put MORE not less emphasis on preeclampsia if they truly want to improve the lives and health of babies. At least in theory, they have been open to their local chapters working with us to have events and initiatives that include important messages about preeclampsia awareness. We know of one instance where there was poor cooperation around our materials distribution, but don't know if any of our other local volunteers have tried, but failed to engage local MoD chapters. So many of their Ambassador families are victims of preeclampsia, I would hope that they would be open to campaigns that advance the importance of knowing warning signs and diligence around diagnosis.
I'd be interested in anybody's experience at the local level. And if this is a concern for you, I'd also encourage you to politely but clearly approach your local MoD chapter and begin a dialogue about how we can work together for our common interests -- healthy babies!
Eleni
Sorry to let this thread go so long without commenting. As Sara mentioned, I was traveling on business. There are a number of issues at play here, but I will say that this thread has prompted me to contact MoD to express our concerns (again) and I'll let you know what response we get.
The MoD is on a quest to reduce preterm births and because roughly half of them are from unknown causes, a good deal of the research they fund is to get at the root causes and potential prevention of those "unknowns." Preeclampsia is - at last count - the number one KNOWN cause of preterm birth, around 15%. The March of Dimes does fund *some* research in preeclampsia, recognizing its role in this problem, and was an active participant in a PE workshop at NIH 3 years ago (I was a presenter there on behalf of the PF). I will also find out the current status and amount of that research, relative to the overall pot of money being spent in this area. I believe that if you are donating to them, you should understand how much of your dollar is targeted to the issues you care about.
They also willingly worked with us to ensure the info about PE on their website was accurate and they must still link to our website because our website analytics show redirects from the MoD website. The Preeclampsia Foundation is considered an "alliance" member of the MoD - you can read more about what that means [url="http://www.marchofdimes.com/21222_5765.asp"] here [/url]. We have not formally reviewed their website in well over a year to determine if their PE information is still accurate and we are appropriately referenced. If somebody has some time and would like to help do a quick audit so that we can suggest new edits or additions, we'd be most grateful.
Beyond that, this is indeed a tricky area for them to navigate as we clearly confuse the "preterm delivery is bad" message. As we all know, in preeclampsia and related hypertensive disorders of pregnancy, preterm delivery is sometimes the healthiest option for the mother and even the baby. The challenge is getting a clear diagnosis and being able to accurately predict when delivery should happen to prevent or at least lessen adverse outcomes. A too early or unneccessary delivery can be just as bad as a too late delivery. That said, I hardly think they'd be happy with reducing the preterm birth rate only to have the stillbirth rate shoot up.
We have always contended they should put MORE not less emphasis on preeclampsia if they truly want to improve the lives and health of babies. At least in theory, they have been open to their local chapters working with us to have events and initiatives that include important messages about preeclampsia awareness. We know of one instance where there was poor cooperation around our materials distribution, but don't know if any of our other local volunteers have tried, but failed to engage local MoD chapters. So many of their Ambassador families are victims of preeclampsia, I would hope that they would be open to campaigns that advance the importance of knowing warning signs and diligence around diagnosis.
I'd be interested in anybody's experience at the local level. And if this is a concern for you, I'd also encourage you to politely but clearly approach your local MoD chapter and begin a dialogue about how we can work together for our common interests -- healthy babies!
Eleni
