Until we find a cure...

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Re : Until we find a cure...

Postby sandy » Mon Apr 05, 2004 08:56 pm

Ditto to what Catherine said.

Anne, this website and the PF are invaluable. Your efforts have helped so many in such a short time...just by giving us a place to connect with each other and share experiences, feelings, and information. The "Ask The Experts" sections is a huge bonus, and we need to understand how it needs to be used:

Just as a mental health therapist would not and could not try to diagnose over the internet or even the telephone (I would hope), as good and as specialized as the "Ask The Experts" medical team is, a diagnosis and/or treatment suggestions for urgent situations really can't be given over the internet--for the patient's safety.

If there is an urgent situation or need in question, the poster needs to be referred to her own medical team/on call doctor/labor and delivery/urgent care center, and all you can do is make that clear on the website...the rest is up to the poster.

~Sandy/DD born via emergency C at 35 wks/1 day June '03 due to Severe PE/class III HELLP/chronic HBP/asthma

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Re : Until we find a cure...

Postby catherine » Mon Apr 05, 2004 07:23 pm

Anne, I'm so sorry that happened. I don't think that it is any reflection on your efforts to make such a service available. I personally have never seen anything as good or useful. I think it is a real comfort to know that the information, both specific and general, on this site is as good as it gets.

I would like to say this, to anyone who is reading this, if the question you have isn't an emergency, and is personal to your medical history etc. perhaps the expert that you need to be asking... is your own OB. Not withstanding all the Preeclampsia Foundation's efforts to ensure a high standard of appropriate care for hypertensive issues in pregnancy, there are many good MFMs and high risk OBs who can offer us excellent prenatal care and help us deliver healthy babies... it's up to us to find them and to partner with them in order to get the best outcome possible.

Mom to Finn, Lucy (preeclampsia and HELLP) and Chloe.
Moderator HELLP Syndrome Survivors

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Until we find a cure...

Postby annegarrett » Mon Apr 05, 2004 06:56 pm

Our Ask the Expert docs are amazing--I actually like each and every one of them and consider them friends. In addition to being just plain nice people, they regularly answer questions (LOTS of questions) from us, our readers, people we refer to them, on a volunteer service, on weekends and late into the evenings. I have been known to call or email them because someone has posted something concerning late on a Saturday so I could get an email to someone who seemed in danger. We are small enough now that we can do that still...and we try to. But recently we got an email from a reader who said her Ask the Expert Question went unanswered--while others were. "Thanks for nothing," she said, and asked to be taken off our mailing list.

Clearly--we are not able to be there for everyone. This is a source of immense frustration for me personally, and I know for you all as well. We are in that awkward teenage growth spurt where the need is greater than our resources and people don't always appreciate how underfunded we are. I can't overstate it.

We need sustainability--we need it now. We have a huge number of volunteers who are just chomping at the bit to get started on spreading the word and that takes funding.

Fortunately, we have brilliant as well as kind people volunteering here and Dr. Easterling has come up with an amazing and generous idea. In order to be sustainable--we need to know we can count on $5,000 a month. To meet that goal we need 500 people to donate $10 (or $20, or $50+) a mth. Last I checked--that is less than I spend on coffee in a month--so certainly a reasonable amount.

He proposes to enlist doctors--ours and others--to match every $100 a mth we bring in and he will be the first to do so. He will match (monthly) the first 10 people to pledge to $10 a mth for a year until we find a cure. We will set up the system (like PBS and other nonprofits) to automatically deduct that amount from your credit card (with your permission) monthly and this will allow us to have some sustainability.

We will send out an official letter in email soon--he has even offered to take the first person to donate $500 out to dinner when they are in Seattle or he is near them.

To jump start this drive--please email us at info@preeclampsia.org with the subject header: "until we find a cure" and we will put you on the pledge list on line. Once we get the first ten we will put Dr. E's name up and work on the next ten. We can do this. We just have to find a cure.

To donate now and have it credited towards the "Until we find a cure" campaign...go to this link and donate and please note that this is part of the $10 a mth pledge. Save a life--spread the word.


Anne Garrett
Executive Director
Preeclampsia Foundation

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