I have been on the registry since the late 80's early 90's. So far, no matches...

Same here... I've been on the registry nearly twenty years. Never been called...

Oh dear, I am too old. I wish I could have been the one to help her. I hope that person turns up soon.

I've been on the registry for years as well....never been called though...

I registered years ago, but now I guess I have been purged since I am waaaay over the age limit.

Wouldn't it be wonderful if someone from GW turned out to be a match?!

It would make my life to be a match but I've never heard from them either. I didn't know you could be too old (well, not 80 or 90!). 1 in 10,000 doesn't seem daunting. I thought it was much much greater than that.

This is the third child I've heard with cancer recently.

That's incredible that so many of you are (or were) on the registry. Until now, I had no idea there even was such a thing. And yes, cyn427 it would be truly wonderful.

I also wanted to give the Canadian website link. They look internationally for donors, so the pool is as large as possible.

Thanks again to everyone. Not that every child isn't special, but this girl is as nice as they come.

Here is a link that might be useful: one match registry (Canada)

I'm registered as well... No calls either.

I am ineligible due to a genetic blood disease-- but the town I grew up in organized a huge campaign to register friends and neighbors of a high school buddy who needed a BMT. My town is pretty small..but they had an incredible turnout. So many people turned out-- and returned to the area that they had to set up another date. I know you wanted to do something to help. Perhaps this is something you could suggest or help coordinate in your community?

Wishing all the best to this young girl. It's heartbreaking to deal with cancer at any age-- but especially in children.

That is a heart warming story, funky art. We've been talking about having someone come in to register people at a drive, but one of the other teachers said that the only way to do it in our area is through the website. I should call myself just to make sure. We are doing an email drive right now through the school and encouraging everyone on our email list to send the email on to everyone on their list.

I hope it was a positive result for the boy in your town.

snookums, it does seem like an epidemic right now. I don't know if I've just been lucky so far not to have people close to me diagnosed, but in the last year it seems to be everywhere. Last year a very young student in my class lost her mom to cancer. So much sorrow.

Bless you for bringing this child's need to a wider volunteer pool. Two major episodes of disseminated intravascular coagulation (DIC) in adulthood and a separate inherited clotting factor disorder have prohibited me from ever donating blood or bone marrow cells. When I hear these stories it makes me so sorry I cannot help. :-(

"We've been talking about having someone come in to register people at a drive, but one of the other teachers said that the only way to do it in our area is through the website."

To do the community event, how about setting up a computer or two to be the registrar so they can take care of the paperwork while they're there.

When I registered, they drew blood. How do you do this via the internet?

This post was edited by snookums2 on Tue, Jan 29, 13 at 10:30

I think we are going to have a drive on campus. I guess at my age I can still register.

You can be a donor from 18-60. After 44 there is a $100 registration fee because funds are limited and the preferred age is under 44. So that's the pool they usually draw from.

I wish I could register, but I'm medically ineligble. I hope they find a match. They did for a friend of mine who got two matches. One was outside the US and the other I don't remember. One took and the other didn't. She was given those same odds.

lyfia, your story gives me much needed hope at this time.

Snookums, it is my understanding that they draw blood after they get a preliminary match from the mouth swabs. It is the swabs that come in the mail after you register online.

I think the rules are slightly different here in Canada. Here you can register to get the mouth swabs done online and can do so between the ages of 17 and 60. I haven't read the rules for the US site, but snookums sounds like she knows what she is talking about.

Thank you so much gsciencechick.

I had looked it up to see the age limitations:

"Q: If I am between the ages of 18 and 44, why am I more likely to be called to donate?

A: If you are between the ages of 18 and 44, patients especially need you. Doctors choose donors based on what is best for their patient. When more than one potential donor is a good HLA match for a patient, doctors will also consider other factors, including the donor's age. Research shows that cells from younger donors lead to more successful transplants. Doctors choose registry members ages 18-44 more than 90% of the time.

Q: Can I still join if I'm over age 44?

A: Yes. If you are between the ages of 18 and 60, meet health guidelines and are willing to donate to any patient in need, you can join the registry. Everyone on the registry is critical to saving lives. For all registry members, the most important thing you can do is stay committed, so if you're selected as a match for a patient you're ready to move forward.

Q: If I am between the ages of 45 and 60, why is there a cost to join?

A: Doctors choose donors based on what is best for their patient. When more than one potential donor is a good HLA match for a patient, doctors will also consider other factors, including the donor's age. Research shows that younger donors provide the greatest chance for transplant success. Eighteen- to 44-year-olds are called to donate 90% of the time.

To most responsibly provide stewardship of our registry and our funds, we must focus on adding registry members most likely to be called to donate to a patient. Those between the ages of 45 and 60 who want to join the registry are welcome to do so online with a $100 tax-deductible payment. There are many ways to support the mission of Be The Match. "

Here is a link that might be useful: US - marrow.org

I registered years ago. Sadly, no calls.

I am so sorry to hear about this girl. I can't tell you how many times I've wished for a magic wand, to make things all better. :(

I am registered, too. No calls. Our neighbor who is now 13 has just completed 3 years of extensive chemo treatments for leukemia, and he is doing well. He was not expected to live, but he did! I am keeping your DD's friend and family in my prayers.

I cannot register, and I'm also exempted from giving blood or plasma due to a medical condition. I wish I could tho. I have told my family that I do want to be an organ donor and I want to donate my body to science upon death-hoping that maybe my body will be the one to help find a cure for my medical condition.

I, too registered years ago but no calls. I hope this girl is able to get a donor soon!

I love this forum. Can't believe how few people I know who haven't gone the distance. Here, we are the exception. Woo!

Daisychain, yes-- the guy from my hometown (graduated a year after I did) did have a positive result. His match didnt come from town but he did get a transplant and things were going very well last I knew (it was about 3 yr ago).

The registry events were sponsored/conducted by the National Donor Registry. I suspect that the family was responsible for promoting the event. I know I received numerous emails, there was a facebook page and also news stories. I didnt find much info on the event but I've provided a link to one of the articles. They did 3 events in total with great turnouts to each given the size of the town.

I wish I could tell you more but since I couldnt participate, I only have second hand info. I know they took swabs (not blood).

Here is a link that might be useful: donor registry

I was called as a match ten years after I registered! I felt like I won the lottery when they called me. It was eight years ago and for anyone who might be afraid to donate let me tell you the benefit so out weighed the risk. It was the one and only time I have ever felt like a hero. I feel so blessed to have been given the chance to be so connected to another person who before hand I had not known.

I also wanted to let women know that they can donate stemcells after their birth. I donated my daughter's cord blood after my csection to the national bone marrow program. My ob/ gyn will not collect cord blood for private banks for he thinks unless you have a known risk they are scams but he happily collected the cord blood for donation.

This post was edited by roarah on Wed, Jan 30, 13 at 7:21

golddust, yes! I was just thinking the same thing. I have tears in my eyes right now reading all of these wonderful responses. It is hard to keep a positive frame of mind right now, but you all have made me feel like there is hope and that there is a place for joy in this world when so many people care and are willing to help total strangers.

I will register once I'm through this pregnancy (since a donor cannot be pregnant). In the meantime I will forward the link to the website to friends and family.

Unfortunately,I have been ineligible due to the cancer I had 14 years ago. But I will keep her in my thoughts.

Amj, You can donate your cord blood it is stemcells which is what is collected from a marrow donation:) It is safe and harmless and most gyn's will agree to save the cordblood if there is enough. You may call the marrow program in your area and they send a kit to bring to the birth it is free of any charge and the baby will receive a "I am a donon" bib and a keepsake rattle, or at least mine in the USA did:).
The collection of stemcells is used if it matches a patient waiting for a transplant and if after a while it is not a match it is used for research. It is kept for some time so if your own baby needed it it is most likely available still and they would be a match :). Hope you enjoy your pregnancy and new baby!

I donated the cord blood with my other two kids and planned to do it this time around too. Thanks for the well-wishes!

Just registered. I hope she finds a match.