Facebook destroyed my organ transplant group

[Bob Aronson]

In mid September 2010 Facebook destroyed my group Organ Transplant Patients, Families and Friends by sending out thousands of bogus emails to my 2300 plus members.  Some got as many as 120 of the same email.  Facebook was totally unresponsive to my repeated requests to fix the problem so after about 4 days I was forced to shut down the group to stop the Facebook caused spamming.

 

Now I have started over with a new Facebook group and a new name. ORGAN Transplantation Inititative (OTI) exists for one reason, we want to ensure that anyone who needs a transplant can get one whether through donated organs, regenerated organs or mechanical replacements and we full support and encourage all efforts in those directions.  http://www.facebook.com/group.php?gid=152655364765710&ref=ts

 

Our group offers support, important information and discussion to donor families, living donors, caregivers, transplant recipients, patients on waiting lists, patients who are not yet on waiting lists, medical professionals and anyone else interested in the subject. 

 

Unfortunately when we shut down the old group of over 2300 members we lost all of them and most did not know where we had gone so recruiting has been slow.  So far we have 350 members but we need more...thousands more, if we are to have any influence with decision makers who have a significant effect on transplant issues.  By way of this comment I'm asking you to join OTI but also to ask others to do the same.  Visit our goupr, read our mission and what people have to say and then do what you can to help.

 

Thank you

Bob Aronson

Grateful heart transplant recipient and

Founder and administrator of ORGAN Transplantation Inititiative. 

[Ashley Curran]

Bob Aronson is a dear friend of mine, though we have never met face to face, we have a wonderful friendship based on trust, loyalty, and the ability to share almost anything without worrying about future confrontations, or any of that rubbish.

I am actually quite worried about the future of "Transplant Groups", and web sites, along with any of the other media relating to transplants.

My husband is waiting for a liver transplant, and we are in Massachusetts. There is ONE group in the entire hospital we use, Beth Israel in Boston, for liver transplant patients, pre and post. There are NO caregiver groups.

So, I turn to the "Transplant Community" on FB, and places like this.

But what do I find? NOTHING! People like Gustavo are trying VERY HARD to bring us together, to form a common bond, and if there is nothing else we can agree on, we all agree that the future of Medicaid and Medicare paying for these life saving procedures is very bleak.

After Bob's group was destroyed, and yes, destroyed BY FACEBOOK , I started thinking.

Loyalty is the most important thing we can have.

On days , like today, that I am in a hurry, that I don't "feel" like posting, I see emails like the one Gustavo sent about clicking on the ads to SAVE THIS SITE! Then I come here, and Bob, being loyal himself, has posted, but nobody has responded, and the latest posts are from May!

Come on people! Let's get it together! We are busy, we are overwhelmed, we are scared, and some of us have had transplants, and we feel we should be out living instead of on the computer droning on and on...

I wrote an article I am going to post on here called "HEROES OF HOPE"

It STRESSES how IMPORTANT it is for those who have "gone before us" to GIVE THOSE WHO HAVE NOT RECEIVED THEIR GIFT some HOPE! We LIVE on it, sometimes we are so down, so depressed, ALL we can do is be joyful and grateful that someone ELSE has just gotten their transplant.

We were in the hospital 10 times in 2009, and a couple in 2010, and we had a great view of the "chopper" that flew organs in.

We got to see "the cooler" being offloaded one night, and we both burst into tears for the person who was going to receive that precious organ in that cooler.

So please, let's help each other! So many of you DO, I am not saying that there is a complete lack of support, but we can ALL do just a little more, including ME.

As a Caregiver, I often feel depleted, constantly. I get my energy from people like Gustavo, and Bob.

Please, become one of those people, if not for yourself, for others. I will try harder also, ok?

Let;s start some discussions, re-energize this site, and show people that we are STRONG in our bond together.

"The ties that bind us together are stronger than those that will tear us apart" (NA recovery Text)

I would love to start a Caregiver group, if anyone is interested, or at least a section ON this site, so please FB me, friend me, or my email is [e-mail]

NO ADS please or spam!!!

Gustavo, you are doing great, help is on the way!!

We WILL click on the ads, I will start now!

 

XXXX Ash (and Peter my husband)

Boston, MA USA