This year's two-week Be The Match Marrowthon successfully registered over 21000 people in the United States - all for free!

US donors are usually asked to pay about $52 as a full price. Actually it costs a total of $100 to register each donor, it's just that part is funded by the registry.

However, there are ways to register for very little or for free every day.

• In the Canada, the UK, and many other countries, registration is always free.

• If you are in an ethnic group that is difficult to find matches for, go to a donor center and see if they have funds to cover your registration. They understand the extreme level of difficulty finding a donor match and the severe shortages within certain ethnic groups.
  

• Go to a bone marrow drive. Often you can register for free, but if not some of the cost will be covered by advance fundraising, and at-drive donations.
  • In NH, MA, CT, and RI, register with the CRIR for free by showing your insurance card.
  • Be The Match Bone marrow drives by state
  • DKMS bone marrow drives
• Complete an online donor form and request a free cheek swab kit from DKMS Americas that will be sent directly to your home.

• Be on the lookout for promotional codes being advertised for patients. These promotions are paid for by the patient, friends and family for a certain amount of people to register for free. Usually this person is in a difficult group to match. If you find a code, please be respectful, and only use it if you are in a same or similar ethnic group.
  

• In some areas, you can donate platelets twice to offset the cost of becoming a bone marrow donor. Inquire with your local blood donor centre.

Please keep in mind that even if you pay nothing, it still costs a lot for profile typing. If you aren't eligible, or have the extra funds, consider making a donation to the registry. You may help register someone who saves someone else's life but didn't have the money.

Photo courtesy of Save A Life Network

Labels: Be The Match, bone marrow drives, CRIR, free registration, NMDP, online registration

Still time to register for free or tell someone about the Marrowthon. You can save a life, and you don't even need to leave home to register. Fill in the form online, and a cheek swab kit will be sent directly to your home.

Labels: free registration, NMDP, online registration, United States, US

SAVE THE DATE!
Saturday, March 21st, 2009
11am - 4:30pm
LUNACON BONE MARROW DRIVE
669 Westchester Avenue
Rye Brook, NY

We are not wise, we humankind,
who live a little time and die.
What can we do against the night
but weep, and rage, and question why?
For what are we but bone and blood,
and speaking voice and loving heart?
We share what help and hope we may
Together now, before we part.
But if we do not speak, or love,
or offer blood, or bone, to save
another breathing human life
who'll live to love because we gave...
what are we then but cold, alone,
the chilling blood, the empty bone?

- Jo Walton
This spring at Lunacon, representatives of the New York Blood Center will be running an information table and bone marrow registry drive. Registration itself is simple and painless: all you have to do is swab your cheek and fill out a form. To register you must be between the ages of 18 and 60 and in general good health.

More than 35,000 patients per year, many of them children, are diagnosed with diseases treatable by marrow or stem cell transplant. These diseases include leukemia, lymphoma and other cancers and genetic diseases.

Many people do not consider donating because they may not know they can help, but also because they have misconceptions about the donation process. The drive is a great venue for getting your questions answered.

When someone needs a bone marrow transplant and none of their family members are a match, the registry searches for a donor whose tissue type profile is compatible. 70% of people requiring a transplant need an unrelated donor.

A person looking for a stem cell match may find one potential donor in a pool of 20,000, or 1,000,000, or more. The most likely match for someone is a person of the same or a similar ethnic background. No one is guaranteed a match, regardless of background, but ethnic minorities are especially underrepresented and patients have even less chance of
finding a matching donor.

Then they have to hope that person is on the registry. You might be the match necessary to save a life.

Funds were donated to support this drive in memory of Barbara J. Wolfrum.

Thanks to the generosity of the Wolfrum family, 40 people will be able to register at no expense to themselves. Emru and I first became acquainted with Bill's own experience with bone marrow drives, and dealing with his mother's leukemia diagnosis on Shakesville. I have not met Bill yet, but he is my true friend. Here are some posts he made.

My Mom: A strong, brave woman fighting leukemia - can you help?

My Mom whipped me at Scrabble, like she'll whip Leukemia

The Healing of Emru

Emru

Bill's mom passed away on December 31. I was so caught up in my own grief, I somehow missed it. I felt terrible. I don't think very much about what comes next but I can't help picturing Emru and Barbara playing some great rounds of Scrabble together.

Labels: bone marrow drives, conventions, free registration, New York, NMDP

Daniel De-Gale, the inspiration for the UK-based charity African Caribbean Leukaemia Trust, was born on March 17. This young man passed away late last year, but he left a lasting legacy and his family and community continue to work to increase the chances that others get more time on this earth to spend with their friends and family with the continued help of people generous to lend their energy to increasing the number of blood and bone marrow donors, especially from an African Caribbean and mixed ethnicity background.

This year the ACLT and the National Blood Service are hosting the first annual Daniel De-Gale Blood Donation Day, to encourage blood donation.

Many people are not eligible to donate blood:

• If you are not, you or someone you know may require a blood donation one day. No one can predict that they will one day need a blood transfusion on a one-time or regular basis. But when it's needed, you want it to be there.
• You can still learn about the basic eligibility rules. It's important to dispel myths others have built up. Also eligibility rules can change. I was not eligible to give blood at one point, and I checked the rules a few years later and in my case, they had changed. I was recently told I could not give blood until Dec 24, 2009. This is a temporary deferral, but many people treat a temporary ban, as a permanent one and stop donating. If you have ever been barred from donating, this is a good time to recheck your status.
• Discuss blood donation with your loved ones. Children and siblings may not consider blood donation unless it is made a part of your immediate family culture. This is a good day to sit down, and have a discussion about blood donation and how it helps people live their lives.

For those eligible to donate blood:

• Only a very small fraction of the general population donates blood, however it would only take about 5% of the general population to donate blood in many countries to meet the current demand for that region.
• Your ethnicity matters. While two people from different ethnicities can match each other, rare blood type distributions differ by ethnic group.
• Genotyping blood donors can decrease the chance of dangerous adverse immune reactions, even more likely to happen with frequent recipients of blood products - cancer patients, sickle cell anemia and thalassemia sufferers. People within the same or similar ethnic group more commonly share certain genotypes in common. Besides the more commonly known blood groups and antigens, even closer matching can create a higher success rate for patients in need.

If you are living in the UK:

• Consider celebrating this day tomorrow and letting others know about it in your region. If it is a success, the National Blood Service will repeat this event next year, and possibly make it a week long.

If you are living elswhere (like me):

• The limits on this event are only the ones we choose to impose. There is nothing to stop this day from being celebrated within the Pan-African and Pan-Caribbean community. This is an educational and philanthropic community event that does not have borders. Let's help ourselves.

Last April, my brother had a cake to celebrate his 30th transfusion since the previous December. Before he received his bone marrow transplant, he would not have lived without the kindness of anonymous strangers who decided giving up 20-40 minutes of their time was no big deal in case it might make a profound difference to someone else's.

It did.

Labels: ACLT, blood drive, minority donors, UK

You can be the one to help save a life. Jasmina is 6 years old, and looking for a bone marrow donor. She is adopted and black, which means she does not have a family member as a first option, and she is in a donor pool that is severely underrepresented. She is one of thousands of patients every day looking for a donor.

-You can learn more about bone marrow donation. (Start with the facts on the Info tab of the Heal Emru page).

-You can tell others how to help. *** JUST PASS THIS ALONG ***

-If you are eligible you can become a bone marrow donor. You can live in another country- it doesn't matter, as long as there is a registry where you live.

-If you do register, you can tell someone you did.

If you live in New York, there is also a drive tomorrow at PS 41 in NYC.

Hope you can make it! If you can't like me, you can still get registered!

If you can make it, a bone marrow drive is a great place to get questions answered and register easily.

Labels: bone marrow drives, DKMS, minority donors, New York

Are you using Twitter?

I sent this tweet out from my Twitter feed and @healemru:

Are you a registered bone marrow donor. Tweet your friends today and tell them. Add #whyiregistered

While I was at it, I included this status on Facebook:

Tamu would like you to tell Facebookers if you registered as a bone marrow donor and why. Twitterers: http://twitter.com/healemru/statuses/1244894949 #whyiregistered.

I believe small acts can make a difference. Do you feel the same way? A lot of the misconceptions about bone marrow donation begin by talking about it. Telling someone you are registered and why you think it is important is a great way to let people know this is something they can do to to potentially save a life, and that they need not compromise themselves to make a living donation.

If you are in the Ottawa region on Saturday or know someone who is, Black History Ottawa is hosting an event which will also allow you to do the the first portion of registration as a stem cell donor and/or get your questions answered. If you register, you will get cheek swabs sent to your home in an envelope. Swab the inside of your cheeks according to the instructions and send them back.

You will also be able to meet Angela Christopher, former Montrealer, Grenadian, who has acute myeloid leukemia (AML). You may have seen her appeal on the African Caribbean Leukemia Trust (www.aclt.org) website or read about her experiences in The Spectrum, Frontonfrom, Caribbean Calendar, CHUO-FM: "Black on Black", and "Rockers". Angela is a beautiful woman Emru and I connected with when his appeal first went public and she done a lot to influence how people see patients and give them a voice.

Here's the where and when:


An afternoon of music, culture and fashion from Africa and the Caribbean. Health promotion displays on physical activity, nutrition and healthy lifestyles. Information on risks of disease and injury, sickle cell disorder, cancer, diabetes etc. Take the opportunity to check your blood type. Special performances by SIFA choir, Heru drummers and more. A partnership between Ottawa Public Health, Canadian Blood Services, Sickle Cell Disease Parents’ Support Group, and Black History Ottawa. Information: 613-580-6744 Ext. 23923.

Remember, if you are not white in Canada, you have somewhere between a 10-30% chance of finding an unrelated match. Or YOU could be someone's match. If you don't fall within this statistic, you know someone who does.

If you cannot make it, you can register online with OneMatch.

Stem Cell Awareness and the Black Community
How To Register as a Donor in Canada

Labels: Canada, events, minority donors, OneMatch, online registration

Please consider reposting. Thank you. Do not underestimate the power of making yourself heard.

This is the second US bone marrow drive in which I will assist, and I look forward to meeting you and answering questions. This type of drive is not done in Quebec, despite how effective it can be. A person can match another person anywhere in the world, so off I go.


When someone needs a bone marrow transplant and none of their family members are a match, the registry searches for a donor whose tissue type profile is compatible. 70% of people requiring a transplant need an unrelated donor.


Representatives of the National Marrow Donor Program and volunteers from the fannish community will be running an information table and registry drive. Registration itself is simple and painless: all you have to do is swab your cheek and fill out a form. To register you must be between the ages of 18 and 60 and in general good health.

Legislators in several US states have passed laws that make it mandatory for most insurance companies operating in these states to pay the cost of registration. Please bring your health insurance card with you. If you live in RI, NH, or MA you can register at this event at no cost.

More than 35,000 patients per year, many of them children, are diagnosed with diseases treatable by marrow or stem cell transplant. These diseases include leukemia, lymphoma and other cancers and genetic diseases.

A person looking for a stem cell match may find one potential donor in a pool of 20,000, or 1,000,000, or more. The most likely match for someone is a person of the same or a similar ethnic background. No one is guaranteed a match, regardless of background, but ethnic minorities are especially underrepresented and patients have even less chance of finding a matching donor, since ethnicity plays a critical role in increased chnces of matching. Then they have to hope that person is on the registry. You might be the match necessary to save a life.

Many people do not consider donating because they may not know they can help, but also because they have misconceptions about the donation process. The drive is a great venue for getting your questions answered.

The inspiration for this drive is the thousands of people who are waiting on any given day for a donor.


One of them was Emru Townsend, a fan and critic. Instead of writing about animation, comics, and technology, last year he spent his time writing about how people could save his life, or that of someone just like him at healemru.com. This drive is in his memory.

Even if you are not eligible to give blood, you may be eligible to be a bone marrow donor, so please do not select yourself out of the process if you are interested.

Labels: bone marrow drives, conventions, Emru, free registration, Massachusetts, NMDP

Each year The Animation Guild, ASIFA Hollywood and Women In Animation present a non-denominational celebration of departed friends from our animation community. It will be on Saturday, February 7 at the Lasky-DeMille Barn in Hollywood across from the Hollywood Bowl. The 2008 honorees include

John Ahern, Gus Arriola, Phyllis Barnhart, Gordon Bellamy, Harriet Burns, Greg Burson, John W. Burton, Jr., Vivian Byrne, Joyce Carlson, Bob Carr, Rose Di Bucci, Charlie Downs, Ray Ellis, Joni Jones Fitts, Etsuko Fujioka, Steve Gerber, Fernando Gonzalez, Yoo Sik Ham, Larry Harmon, Margie Hermanson, Ollie Johnston, Ted Key, Eartha Kitt, Andy Knight, Harvey Korman, Lyn Kroeger, Brice Mack, Bill Melendez, David Mitton, Gary Mooney, Jim Mueller, June Nam, Ethan Ormsby, Bill Perez, Richard Pimm, Oliver Postgate, Denis Rich, Dodie Roberts, Irma Rosien, Gerard Salvio, Gina Sheppherd, Robert Smith, Jim Snider, Al Stetter, Dave Stevens, Morris Sullivan, Emru Townsend, Pat Raine Webb, Chiyoko Wergles, Bob Winquist and Justin Wright.

(Thank you, Karl Cohen)

Labels: Emru

So. The bone marrow drive was a complete success.

There were 2000-2200 people estimated to attend Arisia, so we went with 20 people as a reasonable number of registrants. This is something new, and even when reactions are positive, usually only a handful register. For instance, someone in Toronto did and event where 7000 people attended and 200 registered online so they could get their kits at home. This is seen as a success although it is proportionally less than 20 people registering at Arisia. Also, many people in that 200 did not return their swabs.

Seventy-one people registered with no pressure on Saturday. There was almost always someone signing up at the table. There were sometimes 2 people but almost never 3 signing up. This made the event very orderly. The annual blood drive (which also had a record year) was a few tables away, and the fan who runs it also mentioned he has been in the registry for many years. He is also a regular platelet donor.

The Naughty Nurses performed skits on Friday night and on Saturday before other events to highlight the good work being done by the blood drive, and created a skit for marrow as well. Unfortunately, I got tied up and did not get to see it on Friday night (hmph).

Because of the success on Saturday, Darryl from the CRIR returned on Sunday and 19 more people signed up, making a total of 90 new registrants.

I also met quite a few people who were already registered. I met a very nice young woman who donated twice and saved a man's life. I met a teenager that received marrow when she was very young from a relative (unfortunately, her donor died two days later from completely unrelated circumstances, and instead of saying, "Someone saved my life in the nick of time." she had been telling people, "Someone donated to me and died two days later," making them think the donation was the cause - Sigh.)

No one was pressured into signing up. Quite a few people took information and said they did not know enough yet and wanted to learn more after the convention then decide, which is fine by me! Both Hema-Quebec and OneMatch have cited that one of the reasons they do not run drives is that people feel pressured to do it. BS. We told people it was happening, and we told people the facts.

With some preparation and the right materials available at the table, compassionate people came of their free will. The drive took up one table, and in addition to the swab kits and consent forms, a few boxes were brought with sweaters, bags and pins for registrants. I brought my pins and some of my Heal Emru business cards.

My friend Val made this happen and has begun the work for another drive next month at Boskone. She and I will be there, too.

Some people could not be marrow donors, so we directed them to the blood drive if they were eligible, and the blood drive did the same for us. Emru would not have lived to see his transplant if he had not received transfusions to keep him alive. (I say this in addition to ALL the great reasons to give blood).

The event was much more emotional for me than I thought it would be, but it felt great and I also heard many positive stories related to the issue and received lots of excellent feedback.

Labels: Arisia, blood drive, bone marrow drives, conventions, CRIR, Emru, free registration, Massachusetts

Representatives of the Caitlin Raymond International Registry and volunteers from the fannish community will be running an information table and registry drive. Registration itself is simple and painless: all you have to do is swab your cheek and fill out a form. To register you must be between the ages of 16 and 60 and in general good health.

Legislators in several US states have passed laws that make it mandatory for most insurance companies operating in these states to pay the cost of registration. Please bring your health insurance card with you. If you live in RI, NH, or MA you can register at this event at no cost.

More than 35,000 patients per year, many of them children, are diagnosed with diseases treatable by marrow or stem cell transplant. These diseases include leukemia, lymphoma and other cancers and genetic diseases.

Many people do not consider donating because they may not know they can help, but also because they have misconceptions about the donation process. The drive is a great venue for getting your questions answered.

When someone needs a bone marrow transplant and none of their family members are a match, the registry searches for a donor whose tissue type profile is compatible. 70% of people requiring a transplant need an unrelated donor.

A person looking for a stem cell match may find one potential donor in a pool of 20,000, or 1,000,000, or more. The most likely match for someone is a person of the same or a similar ethnic background. No one is guaranteed a match, regardless of background, but ethnic minorities are especially underrepresented and patients have even less chance of finding a matching donor.Then they have to hope that person is on the registry. You might be the match necessary to save a life.


The inspiration for this drive is the thousands of people who are waiting on any given day for a donor.



One of them was Emru Townsend, a fan and critic. Instead of writing about animation, comics, and technology, last year he spent his time writing about how people could save his life, or that of someone just like him at healemru.com. This drive is in his memory.

Arisia will also be holding its annual blood drive. Less than 40% of North Americans are eligible to give blood, so if you are, please also consider helping to save lives and in a more immediate manner: http://2009.arisia.org/blooddrive.

Labels: Arisia, blood drive, bone marrow drives, conventions, CRIR, free registration, Massachusetts

Here's to new beginnings in 2009.

The seventh and last principle of Kwanzaa is faith. People turn to others for comfort, support or help, hoping another person will hear them and help them. Sometimes people just have faith that their circumstances will change for the better.

Emru knew that he might not find a match, but he hoped for the best. He put his faith in his family, his friends, and many other people, including complete strangers. Every day thousands of people turn to the bone marrow registry in the hope that someone will be there who can and is willing to help them. He hoped someone would register and then be willing to donate to him, but he knew that each person who got registered was giving hope to each person (and all the people who cared about that person). He had faith that good was being done and held out a belief that things would likely turn out positively for him, and if not, someone else. It was a great day when he found out he had a match.

I remember a phone call I had with Emru that ended in tears for both us. I gave him a picture of him dressed as one of his favourite heroes, and he said he knew he was going to get the transplant and beat the leukemia. He was right about the transplant, at least. But his faith got him very far, and mentally he was in a good place when he left us.

Faith is not always rewarded, but it is rarely rewarded without taking some form of action while maintaining an attitude that things will move into a positive place. If you want to believe in something, do so fervently, but make a change, however small, to see it come to fruition.

Faith endures: the struggle continues.

Labels: Emru, Kwanzaa

The sixth principle of of Kwanzaa is creativity.

I don't want to make another overly long post, but this was a principle dearly cherished by Emru. His love of animation, comics and writing, film were superlative. His creative energy allowed him to work on so many projects. He also cared a lot about the people behind the art he loved, and forged many friendships with those with a creative spark at every point in his life.

That creativity helped a lot this year to find his match as well. He was touched to his very core (as was I and many others) by the illustrated and photographic images people created as people tried to find ways to help spread the word about Emru and others. Emru's words also expressed what he was going through and he could have chosen to write some very angry words but did not. Friends used their words to help explain why Emru needed help and why others needed help too.

When times were tough, these words, images and other creative expressions were like anchors to reality when everything else seemed unreal.

It reminded us that people cared and had great beauty inside them, and that is what makes life is beautiful.

Labels: Emru, Kwanzaa

The fifth principle of Kwanzaa is purpose.

There are many things I can say about this, but this entry is probably the most culturally specific.

One of my concerns this year was that as a community, the African world community has accomplished many achievements on an individual and societal level, but there are still many sobering statistics that show there is work to be done.

The situation with bone marrow donation really cuts to the heart of this matter. Some of us have more mobility, better income, more choices than ever before, but even the most successful black person needing an unrelated donor ends up in the same situation as everyone else like them waiting: their odds suck. They still only have a 60% chance of finding a donor if they live in the States, and around a 20% chance if they live in Canada or the UK.

So for me, the concept of purpose is clear. It is about being able to have the same access to life as anyone else. If people want to solve this problem, they will have to take a hard look at themselves, and decide if they want to make a difference in changing the outcome in this collective struggle. Awareness and registration is a community-building project that will require allies on all fronts, but can only truly be changed from within by the community affected by it.

Labels: Kwanzaa, minority donors

The fourth day of Kwanzaa celebrates cooperative economics. In Canada, registering is free. In many countries, you need not worry about the cost of registration when you decide to sign up as a potential bone marrow donor. Many people worry about the cost of donation, but the donor does not pay for the donation. Instead, depending on where one lives, the donor, donor's insurance covers it, the medical system, and/or special programs run by the registry to help those in need cover it.

This year, we wrote about ways to register for free in the United States. More than half of the world's donor pool lives in the United States, but it costs money to register. There are still many ways to register for free. If you are in a minority donor pool, you can register for free if you present yourself at a donor centre and funds are available. Also, many blood collection agencies allow people to make two platelet donations in exchange for free registration. Many bone marrow drives offer subsidized registration, which means that registrants pay nothing or less than usual. Online registration with the National Marrow Donor Program in the US can be subsidized if you have been provided a promotional code. Online registration with DKMS Americas is free, but people will be asked if they can make a donation.

In all cases people should pay what they can. Why? Because nothing is ever truly free. When someone registers for free, it means the money has been paid by someone else at some point. Donations gathered at bone marrow drives go toward lab typing costs for another person. When Emru died, we asked for donations to two organizations: The National Marrow Donor Program and The African Caribbean Leukaemia Trust. The funds for the donation to the NMDP will go toward paying for someone to register in the United States. 49% of all matches in the US involve an international recipient or donor, so people are being helped everywhere.

On a community level, the funds for the African Caribbean Leukaemia Trust will go toward covering their costs for their tireless work. Their ultimate initiative is the establishment of a registry for African Caribbean and mixed ethnicity donors.

On a personal level, many people stepped forward to help Emru's appeal. People chipped in to help subsidize flyers, print ads, buttons, and much more. We couldn't have done it on the level we did without you.

Labels: ACLT, DKMS, free registration, Kwanzaa, NMDP, reduced registration cost

The third day of Kwanzaa celebrates collective work and responsibility. Some members of the black community call each other "brother" and "sister". We need to reassert this effort to create the notion that what happens to one person affects all of us. The fact of the matter is that the most likely match for a bone marrow donor is a patient of the same or similar ethnicity. If patients of African descent are going to find unrelated donors, then people with a similar genetic story need to make themselves available. Right now, 50-60% of Africans in the United States can find an unrelated donor. In Canada and the UK, this number is around 20%. While there are many allies in communities of all ethnic backgrounds, if people of African descent do not register as donors, these same people do not find donors. It's that easy.

Emru had leukemia, but a host of other diseases were treated with this therapy. When I found out that severe cases of sickle cell anemia in minors is one of the diseases treated, realizing that these patients are 95% of African descent, I understood people really need to band together.

Also, when Emru first found out he needed an unrelated donor, at the beginning many people who did not know me well said this only matters because a relative or close friend is sick. I beg to differ. It only appears on people's radar when someone gets sick, because information about donation doesn't get out fast enough. I have a huge admiration for people who didn't even know Emru's name, who immediately asked, "What can I do"? When I thanked one woman for taking the time to speak with me on the telephone, she merely said, "Of course! We are all family".

Different communities gathered to help as many people as possible, one person at a time. Each new person created a support network with much more outreach potential than everyone separately. Each person has their role to play: A person can get informed, tell others, and, if eligible get registered.

Since I was trying to release information, I felt it was my responsibility to make sure that my information was as accurate as possible. I owed it not just to my brother, but the other people affected by this issue. As I began to separate fact from fiction, and also get a grasp of the dearth of donors for patients waiting for unrelated donors, especially in severely underrepresented groups, I got into action, and asked anyone who would help to join me.

In some cases, I was the one joining them. There are 500 to 600 active requests for unrelated donors in Canada on any given day, 10 times that amount in the US, and more worldwide. In this group, there were patients, friends, families, and good samaritans who realized they could do something to help, and took it upon themselves to do something.

Beverley De-Gale and Orin Lewis formed the African Carribbean Leukaemia Trust and raised the number of African, Caribbean and multiethnic donors in the UK from 550 to 25000 over the last decade.

This was occurring in other communities. Michelle Maykin and Van Le spearheaded Project Michelle and helped increase the registry by over 15 000 people this year, many of Asian descent. The Save Carolyn campaign is largely responsible for 25% of all new registrants in Canada this year being Chinese.

Pat Pedraja made it possible for over 10 000 US residents to get registered over two of his summer vacations. He is in his early teens was named a 2007 CNN Hero and is also organizing to combat the shortage of minorities in the registry. He is being treating over 3.5 years for leukemia but does not need a transplant himself.

(These remarkable numbers are still not enough in both cases.)

Since then other people who begin this type of quest have joined the ranks and now it is my responsibility to keep up my end of the work and and show others the ropes.

Labels: ACLT, Kwanzaa, patient stories

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.

Labels: AADP, ACLT, ASAD, Gift of Life, Kwanzaa, minority donors

The first day of Kwanzaa (Umoja) celebrates unity. In terms of the African community around the world, it was easy for Emru and I to see how this was a global problem and and to also understand the effects of our history and various migrations had on the very current issue of the registries around the world and why it made people of African descent - especially from the Caribbean - so very difficult to match.

It made working with an organization like the African Caribbean Leukaemia Trust a no-brainer. They were committed to helping patients from all over the world. They understood your location was not important.

While unity also meant asking people on a fundamental level to redefine who they thought of as family to illustrate the importance of people within a same or similar ethnicity being the most likely match for another person in that group, it also meant rallying people within that group to come together to help others in need. Unity came in the form of ethnocultural community, a life an death matter in terms of finding a matching donor, but also extended to the unity of offline and online social networks.

I am already wired this way, and it is not spontaneous; it is a learned response over so many years that it feels natural. Emru and I like to help, strive to find answers, and believe in the power of numbers and our potential. We are like this because our parents have inculcated us with a strong sense of who we are, ethics, and belief in our potential and that of others. I believe it for myself, my community, or rather my communities, be it ethnic, cultural, geopolitical, virtual, or intentional.

Patients and their families united to help each other, and we all put our heads together with friends and strangers to try to find solutions. I asked my friends to register for the European, South Asian, East Asian and multiethnic patients who I knew were waiting for a lifesaving match. They did the same for the African community. Unity is instantly scalable to a global level.

We both knew there is power in many people doing a little (sometimes a lot to cover those who didn't feel the same way) to do big things and help one another. And it paid off, not just for Emru, but for at least two others who needed matches, and hopefully others will be on the registry in the future for someone else in need.

If you seek to help one, you help everyone. We are all in this together.

Labels: Emru, Kwanzaa, minority donors

Happy holidays, everyone.

Vicky, Max, Patsy, Beverly and I returned to Montreal early yesterday morning. After driving from Montreal, to NYC, to Lake Worth (near Ft. Lauderdale), we hopped on a plane to Jamaica. We spent six days in Ocho Rios. Our friend Kelly and I flew down to Ft. Lauderdale on the 15th and were present so our whole crew could help Max take his first plane ride back since he was 2. It was pretty traumatic back then, so but he did better this time. Thanks to all the familiar faces, some noise-cancelling headphones to help with his over-sensitive hearing and sitting far away from the engine.

I also want to mention when we got off the plane, another plane from Manchester, UK, landed right after us. I was mostly watching Max but I looked back at the passengers and looked directly two faces I had previously only seen on BBC News, Facebook and YouTube: Sarah Murray-Thompson, who needed an unrelated bone marrow donor and had a successful bone marrow transplant, and her husband Mark. I went over to them and lost all of my words. I barely squeaked out, "Tamu... It's Tamu." After greetings and extending condolences we marvelled at what the odds would be that we would all meet like this. Sarah continues to raise awareness about the need for more black and mixed ethnicity donors and funds for the African Caribbean Leukaemia Trust.

We took some much needed rest at a resort. Fortuitously, two of our friends live right next door to the resort, and we also visited a few members of our extended family and friends in the short time we had in Kingston. The Rockfort Mineral Baths were closed for the season, so my parents spread some of Emru's ashes in the water nearby. I also spread some of Emru's ashes in my late aunt's garden when we got to her place. Two cities out of three requested cities down. Montreal can wait until the snow melts.

When it was time to leave, we got Max on the plane and he did very well. His new catchphrase is "[Insert name] so proud of me?" because he heard us tell him so many times. Emru would certainly be proud of him for conquering his fear, especially dealing with a very real discomfort. In fact, when we landed he remarked that taking a plane was fun! During the later stages driving back home, he inquired about taking a plane alone.

We drove back from Florida, first stopping by family on both Beverly and Patsy's side, as well as some good friends in that state. We left the state and drove through Georgia, South Carolina, Virginia, Delaware, DC, Maryland, New Jersey and New York. We did it in two days because we were having a good time, but it was time to go home. Because we drove through the night, Max forced himself to stay awake for most of it. When he got home at 5:00 am, Max went to bed for a nap and was up very soon after, and wanted to go for a drive! Beverly and Max drove me home in the mid-morning so Max could get his fix.

Of course, we talked about Emru a lot. I think we all had our internal conversations going as well.

I'm not much of a Christmas person these days, and my family has celebrated Kwanzaa anyway since the 70s, which is a lot less about the gifts in our household and more introspective. Whether you've just finished celebrating Chanukah or Yule, are celebrating now or about to celebrate, all of these festivals are really about one thing: family, friends and community. So if you celebrate these ideas and put your ideas into practice everyday, I think everyone reading has been celebrating the entire time. We are so grateful for the help you have given our family and to the countless people you are also trying to help.

Enjoy your holiday and all the best to you and your family, from me and mine.

Labels: ACLT, Emru, minority donors