This is a bit long-winded but hopefully worth it...

Remember when we found out about Rey's cancer and we all started talking about bone marrow donation? At the time I tried to get a marrow testing program going here in town to get people onto the national registry of bone marrow donors.

At the time there was literally NOTHING being done in this area. I left a few messages with the national registry way back then and they finally got back to me this past week!


I've spoken with a woman from the Community Blood Center in Appleton Wisconsin (about two hours from here) and she's helping me with organizing a local drive in my home town!

It's no longer a blood test! It's a COMPLETELY PAINLESS CHEEK SWAB TEST now! So I'm hoping people won't be afraid to be typed and put into the registry.

The only down side, at the moment, is that it costs $52 per person for the tissue typing tests being done with the cheek swab.

While the fee is tax deductible it still sucks to have to pay in order to have the opportunity to help save a life (can you imagine having to pay to donate blood?).

Anyway I'm going to be hitting up the local businesses to see if they'd be willing to spring for the cost of tests if their employees agree to by typed. I'm also going to talk with the Health Department to see if they know of any funding sources. My goal is to get at least 1,000 people in the community into the registry. It sounds like a modest goal but it'll mean raising at least $52,000. And I'm hoping to have the typing drive organized and held in October.

I'd really like to see if the Gates Foundation (of the Bill Gates variety and fame) would be willing to set up a trust to help fund the testing on a national level. It would be sweet to get a national system so people could be typed without a fee.

So. Now comes the time when I hit up the PSC community. But not for money though!

I'd like to get any ideas that you might have for possible national funding sources (and contacts if you know them or can help find them). So far I've thought of and will try to contact the:
- Gates Foundation
- American Cancer Society
- United Way

Later on I also may be hitting you guys up for some donated designs and/or artwork (or at least ideas or refinements to what I can come up with). My thought is to create some promotional material for the marrow drive in my area. Much will depend on the promotional material provided by the registry of course. They're mailing stuff to me tomorrow. I though of maybe even having artwork to sell (maybe eBay or gallery site) to raise money to pay for the testing fees. But I'll burn that bridge when I get to it.

I'm totally excited that this is FINALLY going somewhere. It may or may not end up as a help to Rey but it will end up helping someone else at least.

Thanks everyone!


Chris

That is awesome! It is great to see someone doing something to help others. I'll do anything I can to help and sure anyone here at PSC would do the same.

Nice work Chris and Cheers to you!

Ditto to everything TJ just said.

You are a Saint Chris!

It is a free test here in OZ, we even have a van that goes to your place of work and sets up to test all who agree. They come if invites and all you have to do is not eat 3 hours before being tested and no alcohol the night before.

Good luck with this venture, you never know who will benift from your good health.

WTG Tofu! You rock! (Unfortunately, a cheek swab from me would only render Bourbon & Cojibas. ) Let me know if you need any help.

Bravo, very good to do this.

Researched the Gates Foundation last night. I think there's a real shot there. Unfortunately I can't be the one to approach them. They will only field grant requests from a representative of the 503 non-profit organization seeking funds.

So I passed the information I found on to Kelli (from the National Donor Register). Hopefully she'll be able to follow up and procure some money to help defray the costs of the tissue typing tests.

Hopefully I'll be able to connect with the local blood drives and maybe coordinate the marrow typing with a blood drive. Two For One BABY! YEAH!

That is great, Tofu. I wish you all success in this.

Well, when the time comes, feel free to ask for digital work, or real work, to sell, in case you are going to try for a fund raiser.

Great stuff Tofu - and perhaps you could ask the Government (specific the Health people there) if they are willing to pay (a portion of) the cost of every swap.

Great I hope you get even more than you hope for. I think it is wonderful what you are doing.

I still can't believe people have to pay for having these test done!! It's all free here and we're only a small modest country.The right to life means everyone one should have the chance to live even those who cannot afford to pay for treatment. For someone to be made to pay for offering to help save lives, I just cannot understand that.

As Anna says "ask the Government (specific the Health people there) if they are willing to pay (a portion of) the cost of every swap.

There is still a lot the individual and charity organizations can do to help of course. I would be more than willing to help in any way I can.
Good Luck with your endeavors.

I agree that it's very odd that we have to pay to enter into the marrow registry. I mean I understand the cost of the tissue typing. There's

- The collection. This involves the swab kits, personnel, supplies during the event, promotion, etc.
- The testing. Here we've got lab techs, lab equipment, chemicals, etc. that all need to be paid for.
- The registry itself. They house the data on all the registered donors and match the patients with their best matches. They also reimburse the donors for expenses incurred during the donation process.

So I can can see the why of the cost. I just don't understand the need for the cost being passed on to those willing to be type matched. However I also do not agree that the government should have to foot the bill either. Here in the US we're taxed at just about every turn and that money is used irresponsibly at every opportunity from local to federal levels.

That's why I'm all for setting up a funding system that pays for the costs involved in the testing. It also allows people and companies to donate to the fund as a tax deduction. To me it's a win-win. Companies get the tax break, people get registered, patients get the help they need, and gov't doesn't have to screw it to those who aren't able to be donors (due to health issues, age, etc.)

Thanks Bro. None of my siblings matched so I will have to depend on that donor list. I hope I don't get Anfa's marrow. I can't handle the hangover.

Terrific work, Tofu!

I've already been tissue-typed (when I wanted to donate a kidney for my husband). I wonder if I can authorize the release of the info for use by the marrow donor registry --or ReyRey's doctors?

I do know the test is painless... but the donation is not. I think I could manage, though.

Makes me wanna get typed immediately to see if I'm a match for you or anyone else. It's my understanding that there's only a few anatomical donations that can be completely recovered from. Blood, Plasma, Marrow and Liver (I think).

Heck for $52 I could save a life. To hit that is as simple as

- Skipping out on going out to lunch for a single week.
- Pass on buying one 20oz. bottle of soda/pop each week for a year
- Grill chicken instead of steaks a couple times this summer

Wait..... those are all food related. Must be lunch time.

I´ll never be able to be tested... damn...