Hosting a bone marrow registry drive

[edithr]

If you've hosted one, or been involved in one, can you tell me about it? What was your anticipated response, and the actual turnout? What was your best source of advertising? How did your fundraising go? Any good sources for that? I'm in touch with Be The Match, but I was hoping for anyones personal experience with it. Thank you!

[Neil Cuadra]

Edith,

I'm glad to hear that you are working on this worthy project.

We had a bone marrow registration drive as part of the Los Angeles Hope, Steps & A Cure Walk in April 2011. We piggybacked off the publicity for the fundraising walk.

We didn't expect to get a large number of bone marrow registry signups because the walk attendees were mostly bone marrow failure disease patients and family members. They were likely to already know about the registry and to have already signed up if they were eligible.

To our surprise, many of the volunteers, especially those who came as a team from Kohl's Department Stores, registered that day. Few of them knew anything about bone marrow failure, but it was the perfect storm: volunteers who had come to help because they were community-minded, patients in need right in front of their eyes, and our pitch that they might save a life starting with only a cheek swab. We got a total of 39 new registrants for the bone marrow registry that day.

[KimO]

Our son and a friend of his organized a couple of bone marrow drives shortly after Shauna was diagnosed. They contacted our local blood bank, who provided expertise and a couple of workers. Then they designed and printed flyers, got additional volunteers to help process folks and, along with the director of the bone marrow department of the blood bank, told Shauna's story on a local radio show. We had two dates, one at the local high school and another a couple of weeks later between services at our church. Altogether they registered 112 potential donors. This was even though our local area had just had a similar drive for a toddler who needed a transplant only a few months earlier and 600 had registered then. Plus, donors then (4 years ago now) were required to pay a $25 processing fee to add their name to the registry. I don't know if that is still the case.

I would suggest that 1) you make use of your local blood bank or Be the Match for the technical expertise on the paperwork and processing the cheek swabs, and 2) reach out to groups that know Eric and your family. When a disease like this hits lots of folks want to help but they don't know how. This gives them a concrete way to support you. Even though just attending a bone marrow drive felt like more than we could handle at the time, it was such a blessing to to watch people come through the door and say "we're so sorry you are going through this, we want to help."

Finally, because Eric is not yet 18 be aware that the friends his age will not be able to register -- you must be 18. That doesn't mean their parents and older siblings (and his teachers or coaches) won't want to help.

[edithr]

Thanks for the replies. Be The Match told me yesterday that starting in October, they will only register people ages 18-44, not 60 as previously. That cuts out 75% of my co-workers, darn. I was planning the drive for Oct, she suggested I do it in Sept so I could still get the 45-60 pool, but I don't feel this is the way I want to go.

The blood bank is a great idea, thanks. And I did think briefly about Eric's high school, but like you said, 99% of them are under 18. I work at a college, I'm thinking about focusing on the student population - I know they'll do it, it's the fundraising that I'll have to concentrate on. Kids don't have any money.

I thought of asking local businesses to sponsor $5 per donor.

When she told me yesterday about the lowering of the age limit, I asked about my being a donor (I'm a match, yea!), she wasn't sure. She thought they might use an unrelated younger match, rather than an older (ouch, that hurts) match. Also, my concern is that they are potentially eliminating a big segment of the available population. If my son had the choice between a 60 year old donor and no donor, I'd take the chance.

Why do you think they're going in that direction? Isn't 50 the new 30?

[Neil Cuadra]

Originally Posted by edithr

When she told me yesterday about the lowering of the age limit, I asked about my being a donor (I'm a match, yea!), she wasn't sure. She thought they might use an unrelated younger match, rather than an older (ouch, that hurts) match. Also, my concern is that they are potentially eliminating a big segment of the available population. If my son had the choice between a 60 year old donor and no donor, I'd take the chance.

Why do you think they're going in that direction? Isn't 50 the new 30?

There's been controversy over just that question. Read Why are there age limits for registry members?, a blog post by the NMDP's Chief Medical Officer. Then read the comments posted in reply, many of them angry.

Due to the outcry the NMDP posted again: Follow up to “Why are there age limits for registry members?”

The gist of their argument against donors over 60 is that it's unknown whether their bone marrow can last for the remaining lifetime of a younger recipient. They claim that "a lot of doctors are reluctant to do the experiment". But they don't resolve some obvious questions:

• Would a doctor really let a patient die rather than accept an older donor when it's the only choice?
• If "a lot of doctors" won't use older donors, what about the other doctors? Shouldn't doctors and their patients have the choice?
• What about older recipients? Why can't a 66-year-old patient receive bone marrow from a 61-year-old donor when younger donors aren't available?

Their followup post generated even more replies, but the continuing complaints don't seem to have influenced the NMDP's thinking.

[squirrellypoo]

Anthony Nolan (the UK's bone marrow registry charity) has their cut-off at age 40, and it's always been that way AFAIK.

From their FAQ:

I’m 41 and healthy. Why can’t I join the register?
It costs at least £100 to add each person to our register. It can take many years for a person to be identified as a match but we have to remove them when they reach the age of 60. We need to make sure that our potential donors can stay on the register for as long as possible.

So from their point of view, it's a cost measure rather than longevity. I should probably point out that it's always been 100% free to join the registry in the UK, so you can kinda see their point.