July 24, 2009
Many of you know my birthday is this month. I don't need gifts and usually I ask for nothing. You still don't have to get me anything. For those who feel compelled to get something, these would be the most significant to me:
- A donation in Emru's memory to one of the organizations listed below
- Telling someone how to register as a bone marrow or peripheral stem cell donor
Thanks very much to the many recent "birthday" donors who have already made donations, as well as all the people who have donated to help Emru and in Emru's memory during 2008 ad 2009. Everybody has already done so much. I also I would like to thank my friend Maya, who signed up as a donor. Also, a big congratulations to Sarah, who just met her donor.
Here's the list:
ACLT (AFRICAN CARIBBEAN LEUKEMIA TRUST)
I cannot say enough about this charity. ACLT will help anyone in need, but their focus is increasing participation of ethnic minorities and people of mixed ethnicity in blood and bone marrow donation. You can find Emru's appeal on their website here: http://www.aclt.org/index.
- Online directly: http://www.aclt.org/index.
- By Mail: Southbridge House, Southbridge Place, Croydon Surrey CR0 4HA
LEUKEMIA AND LYMPHOMA SOCIETY: LIGHT THE NIGHT
Vicky is raising money for the LLS and participating in their walk this Fall. I plan to join her team on my birthday.
If you would like to pledge her, this is the link.
LEUKEMIA AND LYMPHOMA SOCIETY: TEAM IN TRAINING
Donna McGovern is also training to participate in a NYC triathlon as a member of The Leukemia & Lymphoma Society's (LLS) Team In Training. (Our mutual friend Penny was also a good friend of Emru’s.) Donna is completing this event in honour of Emru and for all individuals who are battling blood cancers.
BE THE MATCH (formerly THE MARROW FOUNDATION)
About half of all transplants with a National Marrow Donor Program match involve an international recipient or patient. There is a good chance Emru's donor was from the US.
- Facebook ($550 raised so far :) ): http://apps.facebook.com/c
- My friend Val is also celebrating on the same day, same cause: http://apps.facebook.com/causes/birthdays/98822?m=7acf6425
- Online directly on the Be The Match website: http://marrow.convio.net/s
- Other ways to give: http://marrow.convio.net/s
March 16, 2009
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:
December 29, 2008
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.
December 28, 2008
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.
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.
December 25, 2008
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.
November 13, 2008
There is no funeral at Emru's request. Instead, there will be two days of visitation. Feel free to find me whether you know me or not, and ask me any questions you may have about registering as a potential donor.
The general public is welcome to join friends and family in recognizing a life well-lived.
4275, boul. des Sources,
Telephone: (514) 685-3344
Toll-Free: 1 (800) 657-5678
Saturday November 15
2:00 pm to 5:00 pm
7:00 pm to 9:00 pm
Sunday November 16
2:00 pm to 8:00 pm
In lieu of flowers, please learn more about how to get registered to be a bone marrow and stem cell donor. If you are eligible, consider registration, and if you are not, tell someone why it is important and how easy it is to register.
Donations can be made to:
African Caribbean Leukaemia Trust www.aclt.org
National Marrow Donor Program www.marrow.org
October 16, 2008
If you know anyone in England or have friends who do, regardless of background, please let them know about this registration drive occurring on Saturday. It only takes a small blood sample in the UK, and actual donation should you ever match someone is neither risky nor dangerous. Over 70% of people need to rely on a stranger likely of the same or similar ethnicity.
Saturday, October 18, 2008
11:00am - 4:30pm
126 Station Road HA8 7RY
London, United Kingdom
Facebook event (with directions)
It doesn't take much time to register and requires a teaspoon of blood. That's it. If you match, you will be guided every step of the way. The ACLT's current campaign is Heroes Wanted. You don't have to run into a burning building or have superpowers to be a hero. Just a willingness to help.
ABOUT THE AFRICAN CARIBBEAN LEUKEMIA TRUST
In early March, I learned about a young man named Daniel De-Gale and an organization named the African Caribbean Leukemia Trust.
I found them on Facebook and Youtube. I was immediately gripped by the dire numbers of available Caribbean donors in the UK, and amazed that a small group of volunteers worked hard to raise the number from 550 potential donors to 25000 in a little over a decade.
The ACLT has been instrumental in getting the word out about the issue, and also posted Emru's appeal. Since our first contact, Daniel's mother Beverley has been a huge support, and has followed Emru's story every step of the way, as well as being a part of it. They have posted the appeal of other people I have mentioned before: Carolyn Tam, Angela Christopher, Yvette Gate, the late Helen Ross, and Graham Barnell.
ABOUT DANIEL DE-GALE
The ACLT began because Daniel fell ill as a boy and needed a bone marrow transplant. His family found out there were not enough people registered and sprang into action. They have not stopped since.
A willing donor was found in the US and saved Daniel's life. Check out this video of Daniel meeting his donor, Doreene.
His parents formed the ACLT and encouraged that amazing number of potential donors even though more are needed and have facilitated 20 matches for ethnic minority recipients, including people of mixed ethnic descent, who are even less likely to find a match.
Last week, young Daniel passed away at age 21, due to reasons not related to the cancer. Just days before he had given a speech asking people to continue signing up as potential donors.
When I did not know what to do, and was losing hope, Daniel wrote me and got me in touch with his mom. He told me that there was a light at the end of the tunnel and to stay the course. I never got to thank him in person for this.
WHAT WE CAN DO
Please learn more about the ACLT. And if what you learn moves you to act, consider doing one or more of these things:
- If you would like to offer condolences or just help out the charity, donate in Daniel's name, as per the family's request. If you are in the UK, you can even donate 3 pounds via text message.
- Check out the ACLT website http://www.aclt.org or the YouTube channel acltcharity.
-Tell someone why it is worth it to learn about donation and to tell others.
As always, thank you for caring!
August 24, 2008
The Notting Hill carnival in the UK is one of the largest Caribbean carnivals in the world and Europe's largest street festival. The African Caribbean Leukemia Trust is the official charity for the second year in a row. Through their tireless efforts, they have assisted in over a dozen stem cell donor matches, and have increased the number of potential donors who fit this profile in the UK from 550 to 25000 people in a little over a decade.
Dean Sheikh and his family will be present at the clinics encourage people to sign up. His family are Pakistani and they are hoping more South Asian donors will come forward.
The ACLT helped to spread the word of Emru's need for a donor, and I can personally attest to the determination and commitment of this charity.
May 26, 2008
Three clinics in the UK, courtesy of the ACLT (African Carribean Leukemia Trust). Don't let the name fool you—while the ACLT wants more minorities to register, they will happily register anyone who shows up. Times and places:
Saturday 14th June 2008