November 10, 2009

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. On any given day, 16000 people around the world are waiting on a list to find an anonymous bone marrow donor.

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.
This is a free service in Canada and the UK as well as many other countries. In the US, although there is often a fee associated with lab typing, you can have the costs waived by registering online for free (a new development since Summer 2009) via Be The Match, and there are additional ways to register for free.

3. Donation is safe, fast, and not risky.

You never donate stem cells or bone marrow at risk to your own life. Whatever is donated replenishes itself naturally in the body.

4. There are 2 ways to do it.

70% of people will donate in a process that takes a few hours and is similar to donating blood. For a few days leading up to the extraction process, the donor receives injections to produce additional stem cells in the body.

30% of people will donate by having liquid marrow extracted from within the back of the pelvic bone.

5. Many people cannot find matches.

There are 8 blood types, but for a stem cell match there are several million combinations of possible human leukocyte antigen (HLA) profiles - 150 billion different possibilities in theory.

Even though blood is important, and people who need transplants (in addition to many other people) need donated blood to survive, people with a rare blood type can probably find a match in a room with 100 people of different ethnicities (but the rate will go up in a room where everyone is the same ethnicity). For someone looking for a stem cell match, they may need a stadium of 20000 or 50 stadiums (or more) to find a match. The most likely match within the general population is someone of the same or similar ethnicity. If you are of African descent, it is most likely your match will be, too.

Then they have to hope that person is on the registry.

This is where we can help. We can take what we know and tell others to combat the misinformation about the process, so that people understand how important the need is for donors to come forward and how things really work. Use Livejournal, Facebook, Twitter, MSN or your blog.

Learn more at:
Be The Match (US) www.bethematch.org
OneMatch (Canada) www.onematch.ca
Anthony Nolan Trust (UK) www.anthonynolan.org.uk

Feel free to use the Comments section to ask questions. I will answer them or find someone who can answer them.

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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.
  • 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.
  • 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

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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.

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March 19, 2009

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.

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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.

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January 25, 2009

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.

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January 14, 2009

This is the first US bone marrow drive in which I will assist, and I look forward to meeting you and answering questions.
MAJOR UPDATE 2nd Day Added!
Sunday 11:00am
~ 3:00pm

SAVE THE DATE!
Saturday, January 17th, 2009
10:00am ~ 6:30pm
Hyatt Regency, Cambridge
Arisia 2009 Science Fiction Convention

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.

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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.

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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.

This is a free service in Canada and the UK as well as many other countries. In the US, there are ways to register for free.

3. Donation is safe, fast, and not risky.

You never donate stem cells or bone marrow at risk to your own life. Whatever is donated replenishes itself naturally in the body.

4. There are 2 ways to do it.

70% of people will donate in a process that takes a few hours and is similar to donating blood. For a few days leading up to the extraction process, the donor receives injections to produce additional stem cells in the body.

30% of people will donate by having liquid marrow extracted from within the back of the pelvic bone.

5. Many people cannot find matches.

There are 8 blood types, but for a stem cell match there are several million combinations of possible human leukocyte antigen (HLA) profiles - 150 billion different possibilities in theory.

Even though blood is important, and people who need transplants (in addition to many other people) need donated blood to survive, people with a rare blood type can probably find a match in a room with 100 people of different ethnicity. For someone looking for a stem cell match, they may need a stadium of 20000 or 50 stadiums (or more) to find a match.

Then they have to hope that person is on the registry.

The most likely match within the general population is someone of the same or similar ethnicity.


How To Register in Quebec
How To Register in Canada
How To Register Online in the United States

Stem Cell Awareness and the Black Community

By the Numbers: Still a State of Emergency

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September 9, 2008

The Hendrick Marrow Program, the National Marrow Donor Program (NMDP), the NASCAR Foundation and the Jimmie Johnson Foundation have teamed up for the annual NASCAR Foundation Blood and Marrow Drive—providing you with an opportunity to register for free as a potential bone marrow donor.

On September 11, you can visit one of 30 participating race tracks to donate blood and register as a bone marrow donor; some tracks also feature other incentives, like food, t-shirts, and even the opportunity to drive around the track in your own car. (Note that four tracks are holding their events on September 12, September 13, September 21 and December 2.)

If you can't get out to a race track (or, like me, you're just not a racing fan) you can still register as a donor for free online until September 22. Either way, it's time to start your engines.

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May 19, 2008

Registration at this event is free for minorities. From the York Daily Record/Sunday News:
Minorities between ages 18 and 60 are needed for the National Marrow Donor Program and can be screened at a bone marrow drive 10 a.m. to 2 p.m. Saturday at the YMCA Community Center, 452 N. Beaver St. in York.

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May 18, 2008

Here's another way to get registrants and monetary donations for the National Marrow Donor Program: Throw a party! It all goes down tonight in Portland, Oregon. From The Portland Mercury:
Live music! Beer! Helping sick kids!

I think there’s gonna be a silent auction, as well as live music from Red Ray Frazier, Invisible Rockets, Blue Horns, Henry Dark, and Jesse Young and Friends. And did I mention helping sick kids, and beer?

Green Dragon Pub and Bistro, 928 SE 9th, Sunday May 18, 3 pm-11 pm or so.

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The Thanks Mom event is winding to a close. While it's generally possible to find free or reduced-cost registration year-round, it's never quite as easy as during this event. From the Bastrop Daily Enterprise:
The International Paper Company in conjunction with Morehouse General Hospital are joining together to hold a bone marrow drive called the Thanks Mom Campaign from 9 a.m. to 6 p.m. on May 19 at the Louisiana Mill Learning Center.

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May 13, 2008

From the Longmont Times-Call:
Local residents can join for free during the second annual “thanks mom” Marrow Donor Drive, from 4 to 8 p.m May 23 at Longmont United Hospital. Normally, it costs $52 to join, according to the National Marrow Donor Program.

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From News10.net:
Bloodsource will hold another bone-marrow drive on Friday, May 16 at Kaiser Hospital in Roseville at 1600 Eureka Rd., from 9:30 a.m. to 1:30 p.m.

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From the Chicago Sun-Times:
From 6:30 a.m. to 7:30 p.m. Wednesday at the Loyola Center for Health and Fitness in Maywood, the National Marrow Donor Program will hold a bone-marrow drive on behalf of Kim and several others. It's part of a national effort called "Thanks Mom Donor Drive."

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May 12, 2008

From The Greenville News:
When Katie-Belle Cooley of Greenville was diagnosed with infant leukemia at the tender age of 8 1/2 months, her mom knew she would need to take action. Karen Cooley enlisted the help of family, friends, and the National Marrow Donor Program to help add volunteers to the national bone marrow donor registry. Their efforts culminate on Saturday, May 17th at Our Lady of the Rosary Catholic Church located at 3710 Augusta Road from 10am until 4pm.

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From the Connecticut Post:
Forget blood drives. Joseph A. Foran High School's Interact Club is going deeper with an effort to get bone marrow donors.

The club will sponsor the marrow drive from 10 a.m. to 4 p.m. Saturday at the Masonic Hall, 59 Broad St., in affiliation with the National Marrow Donor Program. Interact President Paul Wydra III, a senior at Foran, said it normally costs $60 per person to join the registry, but a special "Thanks Mom" promotion during the month of May means it's free.

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May 11, 2008

Here's a reminder of the bone marrow drives coming up over the next seven days. Many of these drives are free, as part of the National Marrow Donor Program's "Thanks Mom" event.

May 12
Columbus, Ohio - James Cancer Hospital and Solove Research Institute
Syracuse, New York - Boys & Girls Club
Sacramento, California - UC Davis Cancer Center
Kansas City, Missouri - Children’s Mercy Hospital
North Plainfield, New Jersey - Vermeule Community Center
Shoreview, Minnesota - Turtle Lake School
Rutland, Vermont - Alderman's Chevrolet

May 13
North Scituate, Rhode Island - Ponaganset Middle School
Hopkins, Minnesota - Shepherd of the Hill Church
Hannibal, Missouri - Cary Cancer Center
Manchester, Vermont - Manchester Rescue
Fair Haven, Vermont - Fair Haven Union High School

May 14
Providence, Rhode Island - Hasbro Children's Hospital
Madison, Alabama - Dublin Park

May 15
Jeffersonville, New York - St. George's Church
Liberty, New York - Liberty High School
Kansas City, Missouri - St. Charles Borromeo Parish
Minneapolis, Minnesota - Nicollet Mall Farmers Market
Middlebury, Vermont - Porter Medical Center
Huddersfield, England - Newsome South Methodist Church Hall

May 16
Rome, Georgia - Redmond Regional Medical Center
Stony Brook, New York - Stony Brook University
Philadelphia, Pennsylvania - Children's Hospital of Philadelphia
Pittsford, Vermont - Vermont Police Academy

May 17
Central Falls, Rhode Island - Wyatt Detention Facility’s Training Center
Springield, Pennsylvania - Springfield Township High School
Townshend, Vermont - Grace Cottage Hospital

May 18
Mount Holly, Vermont - Mount Holly Rescue Fair
Parkville, Missouri - St. Therese Parish
Kansas City, Missouri - Temple B’nai Jehudah
Kansas City, Missouri - Christ Church
St. Paul, Minnesota - St. Andrew's Lutheran Church
St. Paul, Minnesota - St. George Greek Orthodox Church

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From MyCentralJersey.com:
From 1:30 to 7 p.m. Monday at the Vermeule Community Center, 301 Clinton Ave., the North Plainfield Policemen's Benevolant Assocation and International Association of Firefighters in conjunction with the HLA Registry and Community Blood Services will hold a blood and bone marrow donor registry drive.

Appointments are available every 15 minutes during the entire event. Walk-ins are also welcome.

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From KHQA:
This Tuesday the Cary Cancer Center will hold its first Bone Marrow drive. If you would like to sign up to be in the National Marrow Donor Program, the Cary Cancer Center in Hannibal is holding a free drive this Tuesday from 2 until 6 p.m. No appointments are necessary and it's easy to sign up.
Here's the contact information:
Address: 6000 Medical Drive, Hannibal , MO 63401
Tel: (913) 901-3100, (800) 366-6710

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From the Star Tribune:
2:30-6:30 p.m. Monday, Turtle Lake School, 1141 Lepak Court, Shoreview

5:30-7 p.m. Tuesday, Shepherd of the Hill Church, 500 Blake Road S., Hopkins

11 a.m.-3p.m. Thursday, Nicollet Mall Farmers Market, Minneapolis

9 a.m.-12p.m. May 18, St. Andrew's Lutheran Church, 900 Stillwater Road, St. Paul

Noon-2 p.m. May 18, St. George Greek Orthodox Church, 1111 Summit Av., St. Paul

11 a.m.-3 p.m. May 19, Broadway Ridge building, 3001 Broadway St. NE., Minneapolis

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The National Marrow Donor Program's Thanks Mom event also features a page called The Donor Garden. You can add your photo to a collage of people who have registered, know a loved one who is waiting for or received a transplant, or if you have been a donor or recipient. My ID is 100249.

Add your name to the garden.

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There is a severe shortage of ethnic minorities in the US registry. A donor is most likely to match someone of the same or a similar ethnicity. If you are of Asian, African, Hispanic or Native American descent, you are less likely to find a matching donor.Mother's Day is a time to reflect on how important our mothers are and to celebrate them. Giving life is a powerful experience and the bond between a mother and child are not to be underestimated. Now try to magine the gift a mother receives when she learns that her critically ill child has a second chance at life. Or how a child feels if their parent needs a chance to live.

The National Marrow Donor Program (NMDP) is offering free registration during its Thanks Mom campaign, until May 19, 2008.

During the event, costs to join the Registry online or at a bone marrow drive are paid for by generous partners and contributors so that it is FREE:

- For the first 46,000 who join the registry via the NMDP.

-This includes the first 10,000 who join online via the NMDP's website.

In the US, you get the inside of your cheek swabbed. You get a kit at home or you go to a bone marrow drive or donor center. Here is a list by state of upcoming drives.

If you are not a US resident, this is still important information about the bone marrow registry. Many countries have free registry, every day. Even if you do not live in the US, people who register in the US could save the life of a person anywhere in the world, maybe even where you live. In fact, 49% of US matches involve an international recipient or donor.

There are many myths surrounding donation and registration. Many people do not even know there is an unrelated registry and that 70% who need bone marrow transplant rely on someone outside of the family. After registration, learning more and telling others is the most important key to creating a healthy registry and giving people a chance at survival.

Emru celebrated his birthday yesterday. He says that this is his birthdate "for now". If he has the opportunity to receive a transplant, this may be the day he is given life a second time around.

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May 9, 2008

From the Huntsville Times:
A bone marrow registry drive is set for May 14 from 4 to 9 p.m. at Dublin Park for Bryson Merriweather, a fifth-grader at St. John's School.

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From the Springfield Sun:
In an effort to raise awareness about the National Bone Marrow Registry and to attract potential marrow donors to the list, a group of Springfield Township residents will host a registry drive May 17 from 11 a.m. until 3 p.m. at Springfield Township High School.

A second registry drive May 16 will take place from 10 a.m. to 4 p.m. at the Children's Hospital of Philadelphia.

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From the Longview News-Journal:
Because I Care and the National Marrow Donor Program are sponsoring a recruitment drive from noon to 3 p.m. Saturday at the Longview Mall center court.

For information, call (903) 445-2507.

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From the Providence Journal:
At least three marrow drives are scheduled, with the first this Sunday at Hasbro Children’s Hospital in Providence from noon to 4 p.m. There will also be a drive on May 14, from 10 a.m. to 4 p.m. at Hasbro, and May 17 from 11 a.m. to 3 p.m. at the Wyatt Detention Facility’s Training Center, in Central Falls.

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From the Quad-City Times:
Bone marrow drives will be held from noon to 6 p.m. today at the Mississippi Valley Regional Blood Center, 5500 Lakeview Parkway, Davenport, and from 10 a.m. to 2 p.m. Saturday at the Davenport office and at 3850 Blackhawk Road, Rock Island.

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All of these drives are free. From the Kansas City Star:
The National Marrow Donor Program is in the middle of its annual “Thanks Mom” program. Through May 19, the program is waiving the $52 fee that potential donors pay to cover the cost of tissue typing.

Kansas City “Thanks Mom” drives:

•11 a.m. to 2 p.m. Saturday at Brush Creek Community Center, 3801 Emanuel Cleaver II Blvd.

•10 a.m. to 2 p.m. Monday at Children’s Mercy Hospital, 2401 Gillham Road.

•2 to 6 p.m. Thursday at St. Charles Borromeo Parish, 900 N.E. Shady Lane Drive in the Northland.

•9 a.m. to noon May 18 at St. Therese School, 7277 N.W. Missouri 9 in the Northland.

•8:30 to 11 a.m. May 18 at Temple B’nai Jehudah, 12320 Nall Ave., Overland Park.

•9 a.m. to 1 p.m. May 18 at Christ Church, 5500 W. 91st St. Overland Park.

•Noon to 8 p.m. May 19 at Argosy Casino, 777 Argosy Parkway, Riverside.

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Free registration this Monday. From Rocklin & Roseville Today:
The Sacramento event, hosted in collaboration with BloodSource, will be held on Monday, May 12, from 10 a.m. until 2 p.m. at UC Davis Cancer Center, 4501 X St., Sacramento.

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News 10 Now reports that Syracuse, New York teen Eunique Darby found an unrelated match through the registry (congratulations!) and also reports on two upcoming donor drives. I got the details from the NMDP website. Registration is free for both:
Telephone Numbers: (877) 261-6786
Drive Location: Boys & Girls Club
Address: 2100 East Fayette Street, Syracuse, NY 13224
Drive Date: May 12 2008
Drive Time: 4:00PM - 6:00PM

Telephone Numbers: (718) 797-7850, (800) NY-BLOOD ext 2
Drive Location: Stony Brook University
Address: Stony Brook Medical Center, Stony Brook , NY 11794
Drive Date: May 16 2008
Drive Time: 8:00AM - 3:00PM

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May 8, 2008

As this is part of the Thanks Mom campaign, registration is free. From the Rome News-Tribune:
A marrow donor drive will be held at Redmond Regional Medical center on Friday, May 16, from noon until 5 p.m. in Classroom A in the lower level of the hospital.

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May 4, 2008

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From the Herald-Mail:
Valley Grace Brethren Church in Hagerstown will hold a bone marrow drive with the National Marrow Donation Program from 9 a.m. to 3 p.m. on Saturday, May 10, at Valley Grace Brethren Church, 17310 Gay Street.

The bone marrow drive was inspired by Big Pool resident Terri Tucker, who was diagnosed with acute myelogenous leukemia.

There is no cost to donate. Donors must meet health guidelines, be between the ages of 18 and 60, and be willing to donate to any patient in need of a bone marrow match.

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From The Journal of a Prizefighter:
Registering is easy, and at no cost other than a simple cheek swab and the willingness to participate.

When: May 24th, 2008 10AM - 4PM
Where: Katonah Village Library
26 Bedford Road
Katonah, New York

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May 1, 2008

Free registration at this bone marrow drive. From Media Newswire:
COLUMBUS, Ohio – The National Bone Marrow program is holding a bone marrow drive on Monday, May 12, from 10 a.m. to 5 p.m. Volunteer donors can help save the lives of 35,000 children and adults who develop life threatening disease each year.

This year’s drive will be held at The James Cancer Hospital and Solove Research Institute, 300 W. 10th Ave., room 518A. Potential donors need to be between the ages of 18 and 60 years old and in good health. Donor registration takes 15-20 minutes and participants will be asked to fill out a health questionnaire, sign a consent form and give a cheek-cell swab.

All fees associated with becoming a donor are covered by a grant from the National Bone Marrow Program. For more information, please call The James Line at 614-293-5066.

# # #

Kristina Day
Medical Center Communications
614-293-3737
Kristina.Day@osumc.edu

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My brother is looking for a hero.

You need no special powers, except compassion and the willingness to make a difference.

Register as a bone marrow donor. Save a life.

Registration is free in most countries and online registration is free in the US from May 5-19, 2008. http://www.marrow.org

The comics community has been very supportive of Emru's initiatives. After a month in the hospital, Emru stopped at Cosmix before going home to pick up his comics. They put up our flyer. Many comics stores in Montreal have done this, and are one of the most willing merchants, I've noticed, when I ask people to help. The Montreal Comicon gave us a table last Sunday in the Artists' Alley so we could educate people about the bone marrow registry. Dealers at the show offered to give flyers to their reserve customers. Some had family and friends who had received bone marrow transplants, and know what a life-saving procedure it is.

Thanks to the Montreal team that held the Iron Man premiere and let Emru enjoy his first movie since he was diagnosed and also make an empassioned plea to the audience.

As comic book fans, he and I truly found it special that we could enjoy this film together.

Because of the comics we read as kids, he and I believe in heroes. We still do.

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April 30, 2008

From the Bricktown Blog:
A Bone Marrow Drive has been scheduled for Monday, May 5, from 8:00am until 8:00pm, at the Dearing Christian Church. At the Drive, you will be tested with a cheek swab. The Drive will be sponsored by the Red Cross. The cost for this tissue test is typically $52, but there will be NO COST at this particular Drive.

Also, extra details from Tallgrass Rocks:
Walk-ins are welcome, but a RSVP will help to prepare enough supplies. Contact: Dawna @ (620) 515 – 395 or Darbie @ (620) 331 – 9754.

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April 29, 2008

This drive provides free registration. From the Rocky Mount Telegram:
In an effort to get more local names on that national registry, the Kate & Billy Harrison Family YMCA will host a bone marrow drive from 8 a.m. to 7 p.m. May 6, said Debra Slavin, one of the event organizers.

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April 25, 2008

From Foster's Daily Democrat:
If participants are residents of New Hampshire, Massachusetts or Rhode Island, those states mandate that insurance companies cover the cost of being tested at the drive. Otherwise, the cost is $75.

But there will also be a raffle held during the drive. The proceeds will go toward the Caitlin Raymond International Registry, which is a coordinating center for bone marrow and peripheral blood stem cell and placental cord unit donor searches. The registry is working with Plante to hold the drive, to cover the cost of anyone who doesn't have the $75 or cannot afford the cost.

Plante said there are some great prizes for the raffle including sports tickets and items signed by the Boston Bruins hockey team.

The drive will be held Friday, May 2 from 7 a.m. to 6 p.m. at Castaways at 31 Cocheco St. All are welcome, but only people ages 16 to 60 are eligible to be tested, and anyone who qualifies who is 16 years of age cannot undergo the procedure until age 18.

I'd also like to highlight something mentioned earlier in the article:
Plante has organized the bone marrow drive, which will be held at Castaways Restaurant and Lounge on Cocheco Street in Dover. Plante said it took a lot of phone calls and effort to figure out how the process works, but once she got in touch with the right people, it was "so easy."
The "right people" in the United States are the National Marrow Donor Program. If you visit their website, they'll tell you who to contact and what they can support you with. We've heard from others than organizing a drive is, more than anything else, a matter of finding space. Like the act of registering, it isn't that hard to make a significant impact.

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From The Kansas City Star:
Then from 2 to 6 p.m. May 15 the National Marrow Donor Program will screen and register potential donors for free at St. Charles Borromeo Parish, 900 N.E. Shady Lane Drive, Kansas City, North.

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April 24, 2008

An e-mail to the UCSF Student Activity Center regarding the April 30 drive at the University of California San Francisco led to a followup e-mail from the recruitment director of the Asian American Donor Program (AADP). (Don't let the name put you off; everyone is encouraged to register.) She pointed me to their website, which includes a calendar listing all of their upcoming drives and events, through to June 8. These aren't all in San Francisco. Other cities include Davis, Sunnyvale, San Jose and Palo Alto... to name a few. From their calendar page:
On your consent form, we will need the names, addresses and phone numbers of 2 close contacts who do not live with you and not living with each other.

Unless otherwise noted, all drives are public and open to all ethnic minorities interested in registering with the National Marrow Donor Program Registry. Due to fluctuating funding, non-minorities can be expected to pay up to $52 for registration.
The next four events take place this weekend in Sunnyvale, San Jose and San Francisco.

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April 23, 2008

The marrow drive is on the 30th, but—and this is really last-second—there's an information session today from noon to 1 p.m. From the UCSF Campus Calendar:
Wednesday, April 23, 12 –1pm, HSW 303 INFO SESSION Come for yummy Vietnamese sandwiches and information on being part of the Bone Marrow Drive scheduled for Wed. April 30. Bone marrow transplantation is used to treat cancers and other diseases. YOU can help! Sponsored by the AHC, VSA, KAHPSA, APAMSA, SNPhA and the Chancellor’s Endowment Fund.
Update: Registration is free for minorities; non-minorities may have to pay a fee. Click the graphic at left to download the event flyer as a PDF.

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April 22, 2008

Free registration at Harvard. From GoCrimson.com:
This Friday, April 25, the Harvard football team will coordinate the Harvard Football Bone Marrow Drive to capitalize on the opportunity of a lifetime – the opportunity to save a life.

From 2-5 p.m. at Harvard's Lavietes Pavilion, the football team invites everyone to be tested to see if they are able to donate. There is no cost to be tested and anyone can make a difference in a minimal amount of time.

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April 17, 2008

Free for minorities, reduced cost ($25) otherwise. From Fremont Public Library...Let's Talk!:
A blood and bone marrow drive will be held at the College of Lake County on Wednesday, April 23. The drive is sponsored by the CLC Health Center and LifeSource and will be held from 9 a.m. to 8 p.m. in Anderson Court, located in Building A on the Grayslake Campus, 19351 W. Washington St.

An oral swab is taken to determine if potential donors are a bone marrow match. There is a $25 charge for the blood marrow donation. Exempt from the fee are minority groups (Asian, Black, Latino, Middle Eastern, Native American), fire fighters, police officers and college students in health care fields.

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April 14, 2008

From KCRA 3:
Drives are open to the public and there is no charge for minorities to register.

Tuesday, April 22
No time information available
Jerry's Paint & Supply
3358 Fulton Ave., Sacramento
916-483-4661

People can also go to any location of Bloodsource to sign up.

www.bloodsource.org

1-866-822-5663

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April 13, 2008

From KYW Newsradio:
Villanova [University] will hold their drive on Sunday April 20th at the Jake Nevin Field house from 1-4pm and it does not cost anything to get tested.

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April 11, 2008

Free registration, thanks to the efforts of Chris Morin. Although he's more than raised $11,000, he'll still need help defraying some of the costs. From the Post Tribune:
The bone marrow drive is simple. Anyone between 18 and 60 can go to Crown Point High School on April 20 and have their mouth swabbed.

On Saturday, at Crown Point High School, a fund-raiser will be held to help defray the cost of the bone marrow tests. Eight high school bands will play between 4 and 10 p.m. and there will be concessions and games for kids. The cost is $5.

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$30 registration for Caucasians, free for minorities. From the Grand Junction Free Press:
Anyone else willing to help Bryson or become a match for others can come to the DoubleTree Hotel, 743 Horizon Drive, from 11 a.m. to 3 p.m. Saturday to submit a cheek swab and enter their name on the National Marrow Donor Program Registry.

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Reduced registration costs for Caucasians ($25) and free registration for minorities at a drive happening in Las Vegas this afternoon. From KVBC News 3, the location and time:
Dean Allen Elementary
Multipurpose Room
Friday, April 11, 2008
2pm to 6pm
8680 W. Hammer Lane Las Vegas, NV 89129

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News on a free bone marrow drive from the Sun News. Jolie Tirado, who found a compatible bone marrow donor, was diagnosed with AML the same day as I was, and started chemotherapy three days later than I did. The drive is part of a larger event:
And while Jolie's healthy recovery is the most important thing, the Tirado family does face a mounting financial burden in the wake of her diagnosis. With the cost of her hospitalization, treatment, and procedure estimated at a half million dollars, the family will be facing out of pocket expenses in the tens of thousands of dollar range.

To help defray some of the costs as Jolie begins her long road to recovery, family and friends are organizing a benefit for the family. The event will be held on Sunday, April 27 at Infant of Prague Church in Cheektowaga from 1 to 7 p.m.

Organizers of the benefit are still in need of donations and baskets for the Chinese auction. Anyone willing to make a donation can contact Lori Tirado at 228-4728. Individuals who wish to make a cash contribution can make checks payable to "The Benefit for Jolie Tirado."

Most importantly, the event will include a free bone marrow registry drive conducted by the National Bone Marrow Registry. This will give people the chance to join the registry and potentially save a life. The sample is taken by a cotton swab inside your mouth. It is painless, free, and as Jolie points out, it was her donor's decision to join the registry that may have saved her life.

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April 7, 2008

From the Rutland Herald, news of a bone marrow drive where it's free to register:
Rutland Regional Medical Center will host a donor registration drive Wednesday at the Statehouse for the National Bone Marrow Program Registry.

The donor drive is set to start at noon and run to 6 p.m.

Donations will be accepted at the drive Wednesday to cover the $52 per person cost of the testing.

The hospital will also be hosting 10 other donor drives in May as part of "Thanks Mom," the National Marrow Donor Program's largest awareness campaign of the year.

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April 5, 2008

From St. Cloud State University's University Chronicle—free registering, just bring a photo ID:
This year the Daun Kendig Memorial Bone Marrow Drive will be from 10 a.m. to 3 p.m. Wednesday, April 9, in the Atwood Ballroom.

The drive is conducted mainly to recruit college students, but people can come from the community to get on the registry.

For more information, contact Diana Rehling at 308-1693, dlrehling@stcloudstate.edu, or Maureen Flanders at flma0501@stcloudstate.edu.

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March 26, 2008

Animator, pal and all-around fun person Dee Boyd hit me with some awesome info for Rhode Island registration: the Rhode Island Blood Center is hosting a series of drives throughout R.I. for the next two months. Dates and locations are here, but here's an interesting tidbit from the centre's page:
Testing costs are covered by health insurance or Michael's Fund of Fall River, MA. You can register at any Rhode Island Blood Center office or blood drive by asking the staff for an application.

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March 15, 2008

One potential obstacle for people who want to join the marrow registry in the US is the $52 fee. There are several ways around that (which we'll be discussing in future postings), and one surprising method is outlined in this blog posting on This Eclectic Life. There, Shelly Kneupper Tucker relates that she found a way to sign up to donate for free: she simply had to donate platelets twice (which is much like donating blood, but it takes more time), and then they waived the fee.

Aside from saving you cash, platelet transfusions are also very important to us AML patients. Because chemotherapy wipes out our immune systems, we often require transfusions of blood or platelets. (I figure I've received about 12 bags of blood since I first entered the hospital in December, and 7 or 8 bags of platelets.) Platelets are the cells responsible for clotting, so when we run low we bleed easier and longer. When I was released from the hospital after my second round of chemo my platelet count was a little low; the doctor told me it wasn't enough to keep me there, but to be careful about slipping on the ice. "If you have any kind of accident, go straight to emergency."

So you know what? Having a few extra platelets around is pretty helpful.

Update: Minutes after this post went up, I received a reply from Shelly Tucker, and she said that her experience was at Carter Blood Care in Denton, Texas. So it's likely that this is a specific arrangement that they have; still, it indicates that it's worth asking at your local blood bank if they have anything similar.

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March 14, 2008

From the Dodge City Daily Globe:
  • When: 10 a.m. until 3 p.m. Saturday.
  • Where: Our Lady of Guadalupe Catholic Church, 3231 N. 14th Ave.
  • Who is eligible to register: People who are between 18 and 60 years old, are willing to donate to any patient in need and meet the health guidelines.
  • Cost: A $25 tax-deductible tissue typing fee applies to non-minority participants, but other arrangements can be worked out for those who cannot pay the fee. A federal grant covers the entire cost of typing minority donors.
For more information: Call Karla Schubert at (620) 255-3014, Gail Chism at (816) 645-3560, the Rev. Wesley Schawe at (620) 276-2024 or 1-800-MARROW-2.

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