Discouraging news about NIH research on PPCM

[JAMESFETT]

Afraid I have to report discouraging news about the National Institutes of Health proposal for a joint study of PPCM in the USA (see below). I am hoping this is a temporary setback.

From: Margaret Harper, MD, Maternal Fetal Medicine Units
To: Jim Fett
Sent: Saturday, April 30, 2005 12:50 PM
Subject: MFMu Network and PPCM


Dr. Fett, I am sorry to inform you the Steering Committe [under the umbrella of the National Institutes of Health] was not interested in our proposal to study women with PPCM for the purposes of identifying potential causes or for creating a repository of biological samples. I am sorry. I tried and gave it my best shot. I feel I let you down. Unfortunately there are individuals within the Network that feel PPCM is not a destinct entity but rather can always be attributed to hypertension or preeclampsia or iatrogenic fluid overload. I enjoyed working with you on the concept proposal and maybe we will have a chance to meet face to face some day.

----- Original Message -----
From: Jim Fett
To: Margaret Harper
Sent: Saturday, April 30, 2005 1:50 PM
Subject: Re: MFMu Network and PPCM


Thanks, Margaret. I am sorry for that outcome. Please don't feel that you let me down. In fact, you gave me a great deal of encouragement. I feel sure that someone else will pick this up, and that ultimately a cooperative study under the umbrella of some part of NIH will be carried out. Your input is valuable, and I expect that the organization you have put into this will not be wasted. I hope to meet you, and I thank you for consulting me. Meanwhile, I am continuing to try to make life better for PPCM mothers in Haiti and elsewhere.

Jim
James D. Fett, MD
PPCM Project
Hôpital Albert Schweitzer
Deschapelles, Haiti
c/o 611 Sumner Ave.
Aberdeen, WA 98520
Tel 360-533-5695
E-mail: jdftlsc@techline.com
----- Original Message -----

[Yvonne]

I'm speechless............

[dawn]

The next time NIH comes across PPCM they may recognize it, and each time it comes up we have a better chance. Thanks for putting it out there.

With WomenHeart, we are also courting NIH to get more women involved in the clinical trials of cardiac meds.

When it so directly affects us, I find it difficult to put up with all of the politics. But I do see that the only way to play the game is to learn their rules. Persistence is key...we're not going anywhere!

[marissar]

Just a thought but my daughter has a rare health problem and Harvard is going to do a study on it. Maybe you could find a cardio doc with Harvard that would be willing to help get the ball rolling. That was all that was done with my daughter a neuro at Harvard got the ball rolling.

[margaretinva]

Very disappointing news but I'm very grateful for you Dr. Fett and your work for PPCM mommies. Like Dawn said it's politics at NIH (as with anything in DC/Bethesda).

[JAMESFETT]

Marissa, your suggestion is good. In fact, I work pretty closely with a cardiologist from Harvard. Ken Baughman is perhaps the most knowledgeable cardiologist in the USA about PPCM. Even while at Johns Hopkins he began to initiate efforts for collaborative study of PPCM in USA. At Harvard and Brigham & Womens, Boston, he is still very interested, contributes regularly to PPCM literature, but has a lot of other responsibilities, so it is slow going on the PPCM front.

James

[JAMESFETT]

----- Original Message -----
From: Baughman, Kenneth L.,M.D.
To: Jim Fett ; Aftab A. Ansari ; Bruce Sundstrom ; Murphy, Joseph G., M.D. ; Len Christie ; Pearson, Gail (NIH/NHLBI) ; Spong, Catherine (NIH/NICHD) ; ekasper@jhmi.edu ; Leslie T. Cooper
Sent: Sunday, May 01, 2005 8:44 AM
Subject: RE: MFMu Network and PPCM


This is an unfortunate decision. It appears those in the Network are ill informed about the lack of understanding of the etiology of PPCM. The NIH has released an RFA (Requests for Applications) to create a Heart Failure Clinical Research Network at 8 centers across the US. Perhaps this Network might ultimately address this fascinating entity (PPCM).

Kenneth L. Baughman, M.D.
Professor of Medicine
Harvard Medical School
Director, Advanced Heart Disease Section
Brigham & Women's Hospital
75 Francis Street
Building A, Room AB 362
Boston, Massachusetts 02115
Phone 617-732-8970
Fax 617-264-5265
kbaughman@partners.org

-----Original Message-----
From: Jim Fett [mailto:jdftlsc@techline.com]
Sent: Saturday, April 30, 2005 4:56 PM
To: Aftab A. Ansari; Bruce Sundstrom; Baughman, Kenneth L.,M.D.; Murphy, Joseph G., M.D.; Len Christie; Pearson, Gail (NIH/NHLBI); Spong, Catherine (NIH/NICHD); ekasper@jhmi.edu; Leslie T. Cooper
Subject: Fw: MFMu Network and PPCM



----- Original Message -----
From: Jim Fett
To: Margaret Harper
Sent: Saturday, April 30, 2005 1:50 PM
Subject: Re: MFMu Network and PPCM


Thanks, Margaret. I am sorry for that outcome. Please don't feel that you let me down. In fact, you gave me a great deal of encouragement. I feel sure that someone else will pick this up, and that ultimately a cooperative study under the umbrella of some part of NIH will be carried out. Your input is valuable, and I expect that the organization you have put into this will not be wasted. I hope to meet you, and I thank you for consulting me. Meanwhile, I am continuing to try to make life better for PPCM mothers in Haiti and elsewhere.

Jim
James D. Fett, MD
PPCM Project
Hôpital Albert Schweitzer
Deschapelles, Haiti
c/o 611 Sumner Ave.
Aberdeen, WA 98520
Tel 360-533-5695
E-mail: jdftlsc@techline.com
----- Original Message -----
From: Margaret Harper
To: Jim Fett
Sent: Saturday, April 30, 2005 12:50 PM
Subject: MFMu Network and PPCM


Dr. Fett, I am sorry to inform you the Steering Committe was not interested in our proposal to study women with PPCM for the purposes of identifying potential causes or for creating a repository of biological samples. I am sorry. I tried and gave it my best shot. I feel I let you down. Unfortunately there are individuals within the Network that feel PPCM is not a destinct entity but rather can always be attributed to hypertension or preeclampsia or iatrogenic fluid overload. I enjoyed working with you on the concept proposal and maybe we will have a chance to meet face to face some day.

[2_flowers_n_lil_B]

Dr Fett,

If there is anything I can do to help with the NIH as a personal survivor let me know. I had none of those condition during any of my pregnancies. My blod pressure actually dropped during the PPCM pregnancy. You can email me at Ndebe1999@verizon.net. I do not get on here much with my hectic schedule. But if any PPCMer who can contribute their personal testomony, even records that have not had those said conditions may help?

Melissa