MatchingDonors.com

[angieskidney]

I don't know what anyone thinks of this topic. Feel free to comment. This was emailed to Dialysis Joe of Dialysis&Transplant City and I thought that since this section is about Internet Links I thought this was the spot for this. If I am wrong please move to the right place. Thanks:

History making kidney transplant to take place at Massachusetts General Hospital on Tuesday January 16, 2006.

Site Endorsed by Various Health Officials, Ethicists and Doctors across the Country

Canton, MA, News Release (January 15, 2006)

Brentwood, New Hampshire man- Thomas Byron will receive a kidney transplant from Momence, Illinois stranger- James Moody found on the Internet.  Both Donor and Patient Found Each Other On MatchingDonors.com, and have never met face to face.

Thomas Byron a man of few words wrote in his profile simply “My Kids & Wife Need Me.  James Moody an altruistic stranger half way across the country also of few words only wrote in his profile 52 year old male.  That's all these two men needed to know to connect and for James to offer Thomas his kidney. 

Thomas' wife Joan wrote more, she wrote My best friend has been changed by chronic kidney disease that requires dialysis treatments 3 times a week for 4 hours.

Thomas is my husband and father of our three children ages 15, 12 and 9. He continues to work, passionately at the University of New Hampshire as the manager of campus support services for students, faculty and staff. He is known for his sense of humor, outstanding customer service, hard working ethic and caring for his family.

Thomas is not physically able to do the things he loves or the things that are considered a normal part of being a father and husband. Cooking and eating dinners as a family, taking care of the lawn and simple maintenance things around the house are difficult due to chronic fatigue. He wants to fish and golf with his sons, volunteer to coach for his daughters basketball team and be apart of social times with friends, but can not. Each day he lives with the thought of being a burden to his family. We love him very much and do whatever we can to make him happy.

My 4th grade daughter's recent hope and dream she wrote for this school year was for her Dad to get a kidney. This is mine too.

We are looking for someone to be a partner with us by donating a kidney to get our friend, Dad and husband back.

James didn't need to know all that.  All he needed to know was that Thomas' wife and kids needed him.
 
James and Thomas have never met face to face, they only communicated through e-mail through MatchingDonors.com, and through a few phone calls. On Tuesday morning they will be the first transplant surgery ever at Massachusetts General Hospital where the patient and donor met on an internet site, MatchingDonors.com, and have gone on to a transplant surgery.
 
This is the 37th transplant surgery in little over a year from a patient and altruistic donor that found each other on MatchingDonors.com.

MatchingDonors.com was launched in January of 2004 as an Internet service based in Massachusetts. Patients on transplant lists put their profiles on the website, and potential donors browse the site for a life they want to help save.  Donors are not compensated, since it is against the law to have any financial benefit from organ donation.

Dr. Jeremiah Lowney, one of the Web site founders, said Patients are asked to pay a membership fee, but there is a sliding scale if they can't afford it. Many praise MatchingDonors.com as a creative, entrepreneurial response to this deadly disparity, and 100% of the money paid for patient memberships is applied to running the site.

Since the inception of MatchingDonors.com, directed living organ donations have increased to historic numbers.  According to UNOS.org, in 2005 there were 6,898 live donors recovered for transplantation and 7,593 were from deceased donors.

“We believe that if more people were better educated on the ability to be a live organ donor, and we add in the personal communication between potential organ donors and patients needing an organ, the number of donors will increase and so will the probability of a patient receiving their much needed organ.  We already have over 3,671 potential donors on our site waiting to find patients needing organs, said Dr. Jeremiah Lowney, MatchingDonors.com Medical Director.  MatchingDonors.com is the most comprehensive searching system available. Other organizations concentrate mainly on the passive anonymous portion of finding organ donors - leaving little or no communication between patients and potential donors.

MatchingDonors.com has had incredible success in since its inception:

• MatchingDonors.com has an extremely high success rate - most patient members that have been on the site for at least 30 days have been offered an organ by a potential donor.   
• At least 40 of our patient members have upcoming surgery dates with their donors found on MatchingDonors.com.
• Immediately after its first surgery in October 2004, MatchingDonors.com had over 2 million visitors on a weekly basis.
• MatchingDonors.com now has over 175 patients with active profiles and over 3,671 potential donors on the site. New patients and potential donors sign up almost daily.
• MatchingDonors.com is recommended and used by many doctors across the United States, including some of the most prestigious transplant surgeons and centers.

As of January 15, 2007, there are 94,697 patients waiting for an organ transplant in the United States.  Yet, in 2005, according to the United Network for Organ Sharing, www.UNOS.org  a non-profit organization contracted with the US Department of Health, there were only 28,112 organ transplants performed in the United States.  Every day, 17 people die while waiting for a transplant of a vital organ, such as a heart, liver, kidney, pancreas, or lung.  This creates a national crisis that has led even President Bush to publicly encourage private organizations to raise awareness of the important need for organ and tissue donors. 

Currently, patients waiting for an organ donation are placed on a national waiting list through the United Network for Organ Sharing.  A computer system matches patients to donor organs according to objective criteria such as blood and tissue type, immune status, medical urgency and time spent on the waiting list.  This ranking system determines which patients are offered available organs.  This process is extremely important in anyone’s organ search, but now MatchingDonors.com offers a way to enhance the search with a more active approach.

MatchingDonors.com main objective is to search the world to find potential live donors for people in need of organ transplants.  Patient members of MatchingDonors.com provide a personal biography as well as pictures of their choice to display on the website, which will create an interest in them and their life story.  When patients in need of an organ transplant place themselves into MatchingDonors.com database, their information will be promoted on the website.  MatchingDonors.com advertises and promotes its Web site in many different ways through extensive public relations networking to increase potential donor’s viewing the site.

The personal connection MatchingDonors.com provides is key to finding a potential live donor.  According to the National Kidney Foundation, "Nearly one out of four (23.4%) of 1000 people queried told pollsters that they would be "likely" to consider donating a kidney or a portion of their liver or lung to help save the life of someone they did not know."  Many people feel more comfortable considering offering a live donation to someone they may have a connection to or a common bond.   

 When patients provide their biography and open up personally, the potential for live donors to respond is increased.  To help educate people about the option of live organ donation, MatchingDonors.com Web site provides extensive information regarding the safety and types of donations available.

MatchingDonors.com Medical Director, Dr. Jeremiah Lowney, is available for interviews for print, radio and television before and after the surgery.  Please contact Doctor Lowney at 781-821-2204 to set up interviews.  An NPR radio interview, ABC News NightLine Story, and New England Journal of Medicine Articles about MatchingDonors.com can be found at www.MatchingDonors.com.

Both the patient and donor can be interviewed; their contact information can be obtained by calling MatchingDonors.com at 781-821-2204.  Many of our patients and donors are willing to speak with the press.  Contact information about our patients and donors may be obtained by calling MatchingDonors.com at 781-821-2204.

MatchingDonors.com is not an organ donor waiting list, and is not associated with any organ donor organization.  It is a nonprofit venue where patients and potential donors can communicate and hopefully expedite a live donor agreeing to give a much-needed organ.  MatchingDonors.com gives patients and potential donors the important communication tools to correspond with each other, but once the contact between the parties has been made, the road to transplant surgery is their own.

Based in Canton, Mass., MatchingDonors.com is a nonprofit corporation with people based throughout the United States. Anyone interested in donating money to support MatchingDonors.com services can do so by calling Matchingdonors.com at 781-821-2204.

More information about the company is available at its corporate Web site, http://www.MatchingDonors.com.

[Zach]

37 transplants in little over a year?  That will definitely solve the kidney shortage.  And maybe those patients with a wife and kids need only apply.  Just more hype and possible $$ for the website owners.

[jbeany]

$600 for a "lifetime membership".  Seems kind of steep to me for something that is supposed to be "non-profit".  And they are hiring sales reps - their words, not mine.

Here's the membership rates -

Membership Plan:
     Lifetime Membership
Membership Plan ID:    Lifetime Membership
Membership Length:    Lifetime
Single Patient Profile:    1
Price Per Posting:    $595.00
Membership Description:    Lifetime Membership A product lifetime membership to the MatchingDonors.com website covers the life of the MatchingDonors.com website--not the life of the subscriber, member or patient. The product lifetime membership is not transferable. The membership remains in effect if MatchingDonors.com needs to be repaired or replaced due to a malfunction. Because a product lifetime subscription is linked to a particular person, it cannot be transferred to any other person.

Of course, websites don't last forever and their lifespan will vary. MatchingDonors.com makes no representations or warranties as to the expected lifetime of the MatchingDonors.com website.

    
Membership Plan:    3 Month Membership
Membership Plan ID:    3 Month Membership
Membership Length:    90 Day(s)
Single Patient Profile:    1
Price Per Posting:    $441.00
Membership Description:    This package comes out to be only $147 per month.

3 month Patient membership. Includes posting of your profile on MatchingDonors.com, and all included membership benefits.

Become A Member:    
     7 Day Trial Membership
Membership Plan ID:    7 Day Trial Membership
Membership Length:    7 Day(s)
Single Patient Profile:    1
Price Per Posting:    $49.00
Membership Description:    7 Day Trial Membership Package.

After your 7 day trial, if you do not call us to cancel, we will automatically convert your membership, and charge your credit card, to a monthly membership at the rate of $295 per month.

You can only purchase a trial membership as your first membership on MatchingDonors.com, and you can only purchase it once. Patient monthly membership includes posting of your profile on MatchingDonors.com, and all included membership benefits.

Become A Member:    
Membership Plan:    30 Day Membership
Membership Plan ID:    30 Day Membership
Membership Length:    30 Day(s)
Single Patient Profile:    1
Price Per Posting:    $295.00
Membership Description:    Patient monthly membership. Includes posting of your profile on MatchingDonors.com, and all included membership benefits.

[BigSky]

They claim to be non profit.

As such does anyone know if it is required of them to publish their financial data to the public?

That would be interesting to see just what is being taken in and where it is exactly going.

[Zach]

They claim to be non profit.

As such does anyone know if it is required of them to publish their financial data to the public?

That would be interesting to see just what is being taken in and where it is exactly going.

Yes, if they are a 501 (c)3 public charity, and have income of $25,000 or more, there is the Federal form #990. Open to public inspection.

If they have income below that amount, then it's up to the State in which the non-profit corporation is founded and operated.

However, anyone can say they are non profit, if their expenses (salaries) exceed their income.

[angieskidney]

Dr. Jeremiah Lowney, one of the Web site founders, said Patients are asked to pay a membership fee, but there is a sliding scale if they can't afford it.

But I would like to see that expense report thing too!

[okarol]

Here's a link to a news video regarding the recent transplant through matchingdonors.com
http://www.myfoxboston.com/myfox/pages/News/Detail?contentId=2084014&version=1&locale=EN-US&layoutCode=VSTY&pageId=3.5.1

[angieskidney]

Here's a link to a news video regarding the recent transplant through matchingdonors.com
http://www.myfoxboston.com/myfox/pages/News/Detail?contentId=2084014&version=1&locale=EN-US&layoutCode=VSTY&pageId=3.5.1

Thx Karol! 

[lamillinger913]

I started to register on their web site, but stopped when I saw the $600 registration fee! Not sure I want to go there. Do you guys think they are trustworthy? Thing is ... now they are calling me on the phone about getting registered. I REALLY don't dig being pressured! That makes me even more skeptical.

[angieskidney]

I started to register on their web site, but stopped when I saw the $600 registration fee! Not sure I want to go there. Do you guys think they are trustworthy? Thing is ... now they are calling me on the phone about getting registered. I REALLY don't dig being pressured! That makes me even more skeptical.

They called me too. I told them I can't afford it! I claimed bankruptcy and live on subsidized housing I told the guy. He said he could work something out. I said, "I thought you could waive the fee! Your website SAYS that!!" Well it turns out they DON'T! They get SOMEONE to pay it! But they were willing to work with me and said I could pay as little as under $50/month.

It is worth it if you can get it cut down to that much but .. that is still a lot per year and you have to KEEP paying.


Hold on I will dig up the email...


Okay here it is:

I didn't contact them at first .. I just stopped at the "payment" part of registration on their site and then they emailed me with this:

MatchingDonors.Com

 Dear Ms Angie Essery;

 

 Our records indicate you have requested information for a membership on our website MatchingDonors.com. Could you please contact me at 1-781-821-2204x7 between 10:30am to 5:30pm EST or leave a detailed message including the best time to contact you. In addition, you can also e-mail me at john@matchingdonors.com to indicate the best time for me to reach you. 

Please let me know of any questions you may have. Thirty-Six successful transplant operations already occurred because of MatchingDonors.com. In addition, there are currently forty members who found donors on our site and are awaiting a definite surgery date. All of our donors are altruistic and want to help people for the sake of humanity. 

If you are interested in becoming a member, we can work out a suitable payment plan that can fit into your budget. Once you are a member you can begin creating your profile and become one step closer to finding a donor. 

Don't hesitate to give me a call, I will be happy to answer any questions you may have.

Yours truly, John Souza

MatchingDonors.Com

ENC

Then I emailed him saying I was wondering about if they could waive the fee as they said they do on their site. He said they don't do that but they usually get Americans fee waived by talking Medicare into paying for it. I did not know that! Well, then I sent another email explaining I am in Canada and here was his reply to that:

Dear Angie;

 

Since  you are a citizen of Canada I could not offer the plan offered by  Direct Care Medicare Payment, but if you can afford 41.00 CAD a month I could place you on our sight on a monthly payment plan if you can afford it. If not please contact me at 1-781-821-2204x7 Mon- Fri EST and we can work other plan for you.

 

Yours truly,

 

John Souza

MatchingDonors.Com

Well if I had $41 extra per month I would invest it into getting a car on the road so I wouldn't have to ride my bicycle in the snow to work! So I turned him down and he stopped calling and emailing me.

As you can see in MY email to him:

Sent: Thursday, January 25, 2007 2:05 PM
To: John Souza
Subject: Re: Possible plan for you to join our website.

 

Hi John,

 

Even that much is too much considering that I am trying to save money to get a car on the road so I don't have to ride a bicycle in snowing weather with temps 7 below freezing and really hope to one day be able to save money to marry my fiance. Plus I have decided that it is not worth my time to be on matching donors simply because I have just recently found out that Canada is behind the USA where Canada still only accepts donors that are relatives or very close long time friends.

 

It would have been nice but what can I do? I live in the wrong country! Thanks for all your efforts!

and then here was his reply to that:

Hi Angie;

 

Here is one more idea for you go to Porter Adventist Hospital in Denver Colorado just look them up on the web to get their contact information.

 

Please contact The National Transplant Assistance Fund and they can raise funds for you to cover our registration fee and cover the cost of your transplant surgery here is their telephone number please give them a call they can refer you to a lot of options.

 

150 N. Radnor Chester Road, Suite F-120 | Radnor, PA 19087 | Telephone (800) 642-8399

 

I hope I gave you enough information that can help you, please contact me if I can be of further assistant to you.

 

Yours truly,

 

John Souza

 

MatchingDonors.Com

So if you can negotiate it might be worth it. It is a personal choice is you want a kidney from a total stranger and if your country allows that. I know the USA does.


BUT lamillinger913, I know a site that does this for free (but is just starting out but needs our support) that you might want to check out!

http://groups.msn.com/DialysisTransplantCity/donorsearch.msnw

[okarol]

If your hospital will accept donors that are unrelated, directed donors met through the internet, there is another option
besides the 2 mentioned above.
If you want to post a "Looking for" ad on a site that is a message forum at Living Donors Online go to
http://www.livingdonorsonline.org/cgi-bin/dcforum/dcboard.cgi?az=list&forum=DCForumID10&conf=DCConfID1
You just tell your brief story, blood type and location. People from all over the world contacted me. Some wanted
money or a visa, but some were actually good hearted donors who offered to help. My suggestions, should you
decide to open yourself to being contacted are:
Be aware of LDO's rules
http://www.livingdonorsonline.org/cgi-bin/dcforum/dcboard.cgi?az=read_count&om=671&forum=DCForumID10
 Rules for Posting in this Conference
This conference is intended to allow potential living organ donors and potential organ recipients to connect. It is
solely a medium for communicating.
When you participate in this conference, you do so of your own free will and must accept full responsibility and
risk associated with posting messages and contacting people who post messages. Living Donors Online and International
Association of Living Organ Donors, Inc. make no guarantees or warranties of any kind.
Buying and selling of organs is illegal in the US, which is the location of this web site. Therefore, any messages that
explicitly or implicitly refer to illegal forms of compensation will be deleted.
If the terms of participation are not satisfactory to you, do not participate in this conference.

I set up a separate email that I used only for these contacts. If someone asked for money or favors, I replied that it's
illegal. If they didn't know their bloodtype I recommended they donate blood to their local blood bank, which would
give them that info for free. Some people were very uninformed about the process so I would refer them to the frequently
asked questions on Living Donors Online http://www.livingdonorsonline.org/kidney/kidneyfaq.htm. If I felt (after numerous
emails back and forth) that the person may be a viable donor, I would give them Jenna's transplant coordinators contact
info. Out of 96 people who offered to donate, I only gave that information to 3 of them. I didn't want to waste the transplant
team's time unless I felt confident of the potential donor's level of commitment. It takes real perseverance for a donor to be
accepted as a non-related directed altruistic donor.

This is based on my own experience. As with any contacts made over the internet, caution and common sense are essential.