Bone Marrow Donor Support Network - Email Exchange With Donor Cruella

bone marrow donation peripheral stem cell donation donor education donor recovery donor support forum & chat room

Donor Cruella

marianne@enhancementmedia.com wrote:
The following data was entered through the Submit A Question form on marrow.org:

QUESTION:
I had my blood withdrawn Wednesday in for my HLA typing and I couldn't
get it to Fed-Ex that night so I refrigerated it. Fed-Ex picked it up in
the next morning. I have been reading all over the Internet that it
should have been kept at ambient temperature and not refrigerated. Did I
ruin my sample?? My donor ID # is ****-****-*

PLEASE RESPOND VIA: E-Mail
CONTACT INFORMATION:
Name: Marianne Guarena
E-mail: marianne@enhancementmedia.com
Phone Number:
Postal Address:
USER SELF-IDENTIFICATION: On the NMDP Registry but hasn't been asked to donate stem cells, Community Sponsor

From: "Questions" <questions@nmdp.org>
To: <marianne@enhancementmedia.com>
Sent: Monday, July 11, 2005 6:26 AM
Subject: Re: Submit a Question

Please call your nearest donor center so that question can be answered in person:
http://www.marrow.org/cgi-bin/NETWORK/map.pl?ctr_typ=DC

From: "Marianne Guarena" <marianne@enhancementmedia.com>
To: "Questions" <questions@nmdp.org>
Subject: Re: Submit a Question
Date: Mon, 11 Jul 2005 11:57:49 -0700

Are you kidding me? It's an easy question. Don't you at least have a blanket statement about this?

You guys have made it 110% difficult for me to even donate in the first place, I had to call twice to get an information kit sent out to me. Then had to send in money to get a remote donor kit, was treated poorly on the phone on two occasions, disconnected once, had one question unanswered (and is STILL unanswered, no one ever called me back) about the clear liquid in the vial I was sent for collection. No one ever answers the phone nor returns calls when I call the AZ donor center (which oversees my state (NV)). And now you can't answer one simple question about specimen refrigeration?

I talked several people I personally know into getting on the registry and they, too, have been met with equal resistance. You guys don't want to save lives, this organization is starting to appear like an indifferent farce. Thank God cases are turned over to the Red Cross once recipient is found, or the procedure would never take place. You boast about having 5.5 million donors on your registry, yet you would have so many more if you would actually make it easier for them to receive the information they need to join.

Maybe you guys should start hiring people who actually like to WORK instead of wasting the time of potential and registered donors and also the lives of others who are on the line here (the recipients). The NMDP may be non-profit
but, in my now newly formed opinion, should be privatized and employed with people who really care about saving lives. Obviously the present method isn't working out for the good of the patients in need. You'd have far more donors if you'd actually care about each individual who you come into contact with, and perhaps show a little common courtesy and effort.

This is utterly ridiculous. I run a patient education network which reaches 1.2 million unique visitors per month and if I, along with 4 volunteers, are able to meet their needs on an individual level, surely your organization with its multiple volunteers or employees can answer a question through email or pick up the phone every once awhile when I do call.

With the amount of media contacts I have you can be sure they will get wind of this entire negative experience I have had.

From: "Questions" <questions@nmdp.org>

To: "Marianne Guarena" <marianne@enhancementmedia.com>

Sent: Monday, July 11, 2005 12:01 PM

Subject: Re: Submit a Question

I gave you the information where you can reach the appropriate
individual to answer your question. My apologies if you neglect to do so.

From: "Marianne Guarena" <marianne@enhancementmedia.com>
To: "Questions" <questions@nmdp.org>
Subject: Re: Submit a Question
Date: Mon, 11 Jul 2005 12:22:07 -0700

Well thank you SO much for lifting a finger.

I guess I got a little aggravated because the entire process has just been a constant struggle. Plus the failure to answer the phones or return phone calls a few days before. But the attitude just threw me over the edge.