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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March 6, 2009



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.

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July 3, 2008

I've been cagey ever since the day I got the news that I might have a matching donor, and I remained cagey (although slightly less so) when that donor was confirmed. The reason is simple; there are any number of reasons a donor could back out before they begin the procedure. It doesn't necessarily have to do with fear or callousness; it could be for medical reasons (if something turns up that appears to make the procedure unsafe for the donor, it's called off), or for pragmatic reasons (I recently read on a potential donor's blog about how, as a single mother, the extended hospital stay her donor centre required for the filgrastim injections wouldn't have worked out; fortunately, there were two other matching donors).

The fear that the donor might back out is heightened by the fact that as a black recipient, I have a much lower chance of finding another donor who can act as a backup—it's hard enough as it is to find one matching donor. And without a Plan B, what do you do when Plan A fails?

This is not a purely academic concern. You might remember back in May when Tamu wrote about Eunique Darby, a Syracuse teen who needed a bone marrow match and was fortunate enough to find one the day before the National Marrow Donor Program's annual Thanks Mom event. What I discovered a few weeks ago—and didn't report in the vain hope that good news would be around the corner—was that Eunique's donor had backed out. So rather than the feelings of relief and preparation for the transplant procedure, Eunique and her family have had to go back to square one.

I was unaware that the family had planned for a drive as part of the Juneteenth celebrations, but, as always, there are many ways to register. No matter where you are in the world, check out our list of registries for more information on registering in your area. Eunique needs a Plan B. For all I know, I might need one, too.

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June 6, 2008

There's a bone marrow drive on Saturday in Brooklyn. An African-American congregation is holding a bone marrow drive. The church is an important element in African-American culture, and was the hotbed of the Civil Rights movement, among other great revolutions of thought. The tradition continues.

Powerful Praise Tabernacle
708-710 Myrtle Avenue
Brooklyn, NY 11205
(718) 422-1170

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May 19, 2008

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May 18, 2008

Eunique Darby is a teenager who was one of the faces of the National Marrow Donor Program's Thanks Mom event, ending Monday, May 19. The event promotes bone marrow and registration is even more convenient, including free online registration, until May 19th.

Online promo code: THXMGARDEN413500

A likely match for a recipient is someone who shares the same or similar ethnic background. If you are of European descent in the US, your chance of finding a match is 80%. If you are of African descent it is 60%. In Canada, if you are of European descent your chance is 75%, if you are anybody else is it 10-30%.
This is a story about Eunique Darby, a 14 year old girl from Syracuse, New York, who appears to be a typical teen. She enjoys spending time with her friends, going to the mall, singing in the church choir, learning how to cook and watching basketball. Unfortunately, Eunique doesn’t get to do these activities as often as she’d like.

Five years ago Eunique was diagnosed with acute lymphoblastic leukemia (ALL), a cancer that affects the white blood cells. She experienced chronic fatique and stomach pains, prompting her parents, Enid and Johnny, to bring her to the doctor for a checkup. After noticing Eunique’s enlarged spleen and an abnormal white blood cell count, Eunique was diagnosed with leukemia.

Eunique needs a life-saving transplant to survive. Eunique has been in remission twice, but was not able to find a donor. After her third round of chemotherapy, Eunique learned last week that she is again in remission…and now, eligible for a marrow transplant.
A day before the event began, a match was found for Eunique, and I hope that person will honour their commitment. There was a pre-planned bone marrow drive held today in her honour. Hopefully, her story will help others find their match.

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May 15, 2008

Just got word of six drives happening in NYC over the next five weeks:

May 17

Eastchester Playground
Adjacent from 1219 Adee Avenue
Bronx, NY 10407
917.498.1695

May 24
St. Augustine Episcopal Church
4301 Ave. D
Brooklyn, NY 11203
718.629.0959

May 29
Fraternal New York State Troopers
911 West John Street
Hickville, NY 11801
917.593.4174

May 31
National Women's Health Awareness Day
Roy Wilkins Family Recreation Center
Baisley Blvd & 177th Street
Jamaica, NY 11434
718.712.0873

June 7
Powerful Praise Tabernacle
708-710 Myrtle Avenue
Brooklyn, NY 11205
718.422.1170

June 22
Church of St. Marks
1346 President Street
Brooklyn, NY 11213
718.756.6607

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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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May 9, 2008

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 4, 2008

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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April 29, 2008

From Thee Rant:
There will be a blood drive/Marrow match search this Wednesday April 30th, and the Suburban Temple located at 2900 Jerusalem Ave. in Wantagh, NY from 1530 Hrs. until 2045 Hrs.

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April 23, 2008

From New York Teacher:
Donor drives will be held May 15 from 3-9 p.m. at St. George's Church in Jeffersonville and 3-6 p.m. at Liberty High School. You can also obtain a typing kit for testing at home. Log on to http://www.dkmsamericas.org/.
Here's the contact information for both:

St. George's Church
97 Schoolhouse Hill Rd
Jeffersonville, NY 12748
(845) 482-4640

Liberty High School
125 Buckley St.
Liberty, NY 12754
(845) 292-5400

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April 11, 2008

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 2, 2008

An e-mail from my aunt about a bone marrow drive at Long Island University's Brooklyn campus led me to a great find: the Icla da Silva Foundation's calendar of bone marrow drives, currently listed through to June 22. This is as good a time as any to mention that we will soon have a calendar on the site to make it easy for people to look up drives and their details.

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March 22, 2008

From the Brooklyn Daily Eagle:
On April 12, in cooperation with the Long Island Blood Center, members of Ladder 175 and Engine 332 will hold a blood drive and bone marrow testing, at the Greenlawn Volunteer Fire Department at 23 Blvd. Avenue in Greenlawn, Long Island.

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