December 27, 2008

The second day of Kwanzaa celebrates self-determination. As a very young child, I struggled to truly understand what this meant. It seemed like one of the hardest concepts to truly grasp. I knew it had something to do with believing in yourself, but I knew that wasn't all it was about it. Confidence was a catalyst, but it was about believing you could do something... and actually doing it on your terms.

No one can accuse Emru or I of not being self-starters (especially Emru, I'm the procrastinator). We try to look for solutions when we or a friend experience a problem. We try to get help, but if we can't find it, we try to figure out what we can do as best as we can, in a way we know how.

Part of this is the understanding that analyzing trends and numbers matter, but as individuals, we are not statistics. We have a higher chance of matching the statistic if we don't begin to take the pains to shape our destinies. I know: easier said than done! But that is an even better reason to get cracking.

For instance, if neither Canadian registry allows personal appeals on their websites, it's about patients creating their own spaces and letting the public know about their need for help to give them a better chance at survival, if not for themselves, for someone like them.

Another example: if neither Canadian registry allows bone marrow drives, its about getting a US registry to come to Canada at personal expense to swab potential matches, or Canadians to go across the border to run bone marrow drives with US friends and volunteers, and work to get drives in Canada, because they won't happen unless people believe that they deserve to be heard on this issue.

Self-determination is about forging your own path and understanding the power of our own voices, and challenge those that try to impose a framework on us that suits them, even though it is not their life in the balance, or that of a loved one. It means patients speaking up for themselves. It means people creating their own campaigns and even organizations. It means rallying to challenge the status quo and ask why registries work they way they do, and making them understand that they are dealing with real people. It's about making potential donors understand that they have the right to make an informed decision about registration. Advocating for the donor also means lobbying for resources for donors that are easy to understand, complete and balanced, and these requests being taken seriously by registries.

This is why organizations like the African Caribbean Leukemia Trust, but also the Asian American Donor Program, Gift of Life Bone Marrow Foundation, and Appeal for South Asian Donors are so important. They work with larger registries, but the provide a specific range of voices to help increase donor education recruitment on their own terms and often represent patients and help their families cope.

We all have a right to be heard, and forge our own destinies.

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June 18, 2008

On June 19, from 2 to 8 p.m. there will be a bone marrow drive in Montreal at the YWHA on Westbury. It is sponsored by Gift of Life to aid two men in the local Jewish community.

Donations are welcome, as the family must pay out of pocket since this is being done by a US registry. You have the privilege of getting swabbed for free, but please try to pay what you can, even if it is only a few dollars, because in the end, someone is paying for it.

Please note that this drive is not sponsored by Hema Quebec, who does not run bone marrow drives. Your name will go onto the National Marrow Donor Program database in the US, but if you are ever found to be a match, they will contact the appropriate registry.

No matter what registry you are on, please remember to keep your address information up to date.

To register any time in Quebec, go to Hema Quebec's website and download their consent form, or call (514) 832-5000 ext 279 and ask for a consent form to be sent directly to you. Read it, fill it in and send it back. You will be contacted to make an appointment at your convenience, where you will provide two vials of blood for typing.

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June 11, 2008

Carolyn Tam and other Chinese patients require new Chinese registrants to add their numbers to the worldwide registry. There are not enough Asian and Pacific Islander registrants.

Carolyn lives in Toronto, Canada, and she is the same position as many - no matches in the registry. Yet. It's up to people to decide that they are going to register or at least continue to spread the word about her.

Bone marrow drives are run by neither the OneMatch Registry nor the Hema-Quebec Stem Cell Registry in Canada. A special arrangement has been made with the Elizabeth Lue Bone Marrow Foundation for the Gift of Life registry, based in the US, to run bone marrow drives north of the border for Carolyn, which will benefit all present and future patients.

June 14: Vancouver

Vancouver Chinatown
28 West Pender Street

Buddha's Light International Association
#6680- 8181 Cambie Road

CCM Canada
2nd floor 4533 Kingsborough Street
(Crystal Mall)

June 15: Toronto

Downtown Toronto
10am - 4pm
23 Grange Road

10am - 4pm
60 Scottfield Drive

Richmond Hill
1pm - 4pm
9670 Bayview Avenue

10am - 4pm
5510 Mavis Road

Personally, I would love to run more entries with the label "bone marrow drives" and "Canada" in the same sentence. Supporting this drive, regardless of background can send a clear message to Canadian registries that bone marrow drives need to be rethought and reinstated.

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