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. Thanks everyone, Tamu 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. http://my.e2rm.com/persona 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. http://pages.teamintrainin 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 Labels: ACLT, Be The Match, LLS, NMDP June 24, 2009![]() 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.
Photo courtesy of Save A Life Network Labels: Be The Match, bone marrow drives, CRIR, free registration, NMDP, online registration June 21, 2009
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 March 19, 2009Saturday, 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 LeukemiaThe Healing of EmruBill'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 February 12, 2009
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. MAJOR UPDATE 2nd Day Added! Sunday 10:00am ~ 2:00pm SAVE THE DATE! Saturday, February 14th, 2009 10:00am ~ 6:00pm Westin Waterfront Hotel, Boston Boskone 46: 2009 Science Fiction Convention 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. 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, Boskone 46 Author Guest of Honour 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 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. Labels: ACLT, DKMS, free registration, Kwanzaa, NMDP, reduced registration cost December 1, 2008
People have been asking me about the registration process.
The United States offers the most flexibility when it comes to finding a way to join the registry. You can register online, go to a donor center, or attend a bone marrow drive, one of the most effective methods of educating potential donors. You must be 18-60 to register or donate. Unlike Canada and the UK, most people will pay to register. However, if you attend a subsidized bone marrow drive, your insurance policy covers registration, or you are in a minority donor pool, you may pay less or nothing. You can register online for free with DKMS every day, or get costs waived if you have a special code with the NMDP. It's just a cheek swab to register, but you should be informed about the methods of donation, should you ever be one of the select group to match another person. To find out more: Go to www.marrow.org > FAQs About Joining > Myths and Facts About Bone Marrow Donation If you are a busy person, set aside between 15-30 minutes, and read information on the site. Use a timer so you get back to the other things you need to do. How to register online in the United States: 1. Determine if you can be a donor. Check your eligibility. If you are not eligible, you can still get involved by telling other people about the importance of the registry and why it is important. 2. (OPTION A) Go to www.marrow.org (10 to 15 minutes) Fill in the online consent form and questionnaire to order your buccal swab kit online. The questionnaire takes this amount of time so you can understand the nature of your commitment and make an informed decision. Also you will be asked some basic medical questions and about your ethnic background. You should have your credit card ready, unless you have obtained a promo code which will let you register for free. It costs $52 to cover lab typing costs. There are methods to pay less or nothing, especially if you are in a group that is underrepresented. Contact a donor centre for details. 2. (OPTION B) Go to www.dkmsamericas.org Email info AT dksmsamericas.org to order your buccal swab kit online. You can register for free through DKMS. Please be advised that someone else (usually a private citizen) will cover what you cannot pay for. So if you can afford to pay some or all of the cost, pay what you can. 3. When you receive the swab kit at home, follow the instructions in the kit. (5 minutes) The consists of an envelope with instructions, 4 cheek swabs, stickers with a reference ID, and a postage-paid envelope in which to return your samples. If you are registering via DKMS, you will be sent a registration form that you must include with the kit, and if you can pay for a part of your lab typing, you should include a donation. 4. Send it back. You're done! It takes about fifteen to twenty working days to get HLA-typed. Keep your address information up to date whenever you move so you can be found if you are ever needed. You could be contacted in two months, ten years, maybe never. But if you match someone, you may be able to save someone's life by donating 2 to 5% of the stems cells in your circulating blood or bone marrow. How To Register in Canada How To Register in Quebec Stem Cell Awareness - Why is it important to everyone? Stem Cell Awareness and the Black community By the Numbers: Still a State of Emergency Labels: #blck, blck, blogs, DKMS, NMDP, online registration, United States 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. Rideau Gardens 4275, boul. des Sources, Dollard-des-Ormeaux, QC H9B 2A6 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 November 3, 2008
The Month of November is National Marrow Awareness Month in the US. Online registration with the NMDP is free.
November 3-9, 2008 is Canadian Stem Cell Awareness Week. Go to the OneMatch site to find out how to Spread The Word. November 17-23, 2008 is Anthony Nolan Week in the UK. Check the Anthony Nolan Trust media centre for their latest YouTube video. So let's try and build some awareness: here are 5 important points that you should know about registration and donation. 1. 70% of people requiring a stem cell transplant need an unrelated donor.The first choice is a family member, but more people will have to rely on a stranger.2. Register by providing a blood sample in Quebec or the UK, or a cheek swab sample in the rest of Canada or the US.In the US, UK and most of Canada, you can even fill in your registration online and get a kit sent to your home. |
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