The Jazzcat

I just received additional information on Michael from his wife Susan below. If you can help at all, please do!

Michael Brecker has Myelodysplastic

Syndrome. If you wish to send cards or letters to Michael, you can do so at the

following address or email him at info@michaelbrecker.com

 

info@michaelbrecker.com

MICHAEL BRECKER

ROOM 1137

SLOAN-KETTERING MEMORIAL CANCER

CENTER

1275

YORK AVENUE

NEW

YORK, NY 10021

FROM: Susan Brecker
Michael Brecker needs your help!

Dear Family and Friends,

My husband, Michael Brecker,

has been diagnosed with MDS (myelodysplastic syndrome), and it's critical that

he has a marrow or blood stem cell transplant—which has nothing to do with the

polarizing issue of embryonic stem cells. The initial search for a donor,

including Michael's siblings and children, has not resulted in a suitable match.

We now hope to have as many people tested as possible that share a similar

genetic background as my husband.  There are some important points to understand

concerning this process:

1. The screening involves only a blood test. It can be

done very easily at a donor center of the National Marrow Donor Program. The

blood test identifies your HLA tissue type. The cost for the test is generally

$40 to $95 depending on the donor center and the laboratory that completes the

test. After this initial testing, all medical expenses are paid for by the

patient or the patient’s insurance.  Go to www.marrow.org or call

1-800-MARROW-2 to find the donor center nearest you. In NYC, call Frazier at the

NY Blood Bank [212-570-3441 / 310 East 67th Street] to make an appointment.  The

test is $40. If it’s difficult to make it to a blood center, private kits are

available from Tepnel Life Codes [800-915-3695]. Order the “HLA [A][B][DR]” kit

for $140. You will need to have a small vial of blood drawn. Indicate to Tepnel

that your test is for “Michael Brecker” and they will know to whom to forward

your results.
 
2.  As a volunteer donor, you are never legally obligated

to donate. Individual decisions are always respected. However, a late decision

not to donate can be life-threatening to a patient and among the most

disheartening news a family can ever receive. Therefore, please carefully

consider your decision to be a donor.

3. Should you be selected as a

potential donor for Michael or any other patient, please understand that there

have been tremendous advances in “bone marrow transplants” and the term itself

can be misleading. At major cancer centers, blood stem cells can in nearly all

instances be harvested directly from your blood.  A donor is simply connected to

a machine that separates the blood stem cells before the donor’s blood reenters

his/her system. On occasion, stem cells may have to be harvested directly from

your bone marrow. All the necessary precautions are taken to ensure the safety

and well-being of the donor. A number of personal health questions are asked

when individuals join the National Marrow Donor Program Registry to be sure they

are in general good health.  In the event you’re asked to donate marrow or blood

cells, a volunteer will first receive a thorough physical examination—at no cost

to him or herself.

4. A match for Michael would be most likely come from

those of Eastern European Jewish descent. If you or anyone you know are in this

category please make a special effort to immediately get tested. Ultimately, you

would be doing something not just for Michael, but for so many more who are in a

similar situation as my husband.

5. You are now part of our internet-based drive for donor

testing.  If everyone who receives email can motivate a bunch of their friends

to get tested, and those friends then forward this email to get their friends to

get tested, we will have rapidly expanded the pool of potential donors. I urge

all of you to get tested AS SOON AS POSSIBLE.

Finally, any local National

Marrow Donor Program donor center can assist in organizing a drive for Michael,

although it would be desirable if you can get a large group, e.g. a synagogue,

to sponsor it. The “Gift of Life,” an organization whose mission is to increase

the representation of the Jewish people in the bone marrow donor pool, will test

you for free when part of a donor drive organized through “Gift of Life.”  Call

561.988.0100 [ http://www.giftoflife.org] for

further information. There exist other organizations that have a similar mission

for African Americans, Asians, Hispanics, etc.  Whatever your roots, please get

tested to assist others!
 
Should you have any questions about any of

this, please do not hesitate to get in touch with Michael's management office at

212.302.9200 or info@michaelbrecker.com

  

Thank you

so much for your love and support. We are so grateful.  
 
 
Susan

 ox

FAQs ABOUT STEM CELL

TRANSPLANTS

Susan Brecker’s heartfelt plea elicited an outpouring of

support for Michael—and an outpouring of questions. As there is outdated and

conflicting information on the web concerning the stem cell transplant process

that can assist Michael and so many others, we assembled a list of frequently

asked questions—a hybrid of material found throughout the web in addition to new

information. Before contacting Michael’s management office with your questions,

please review the following. Thank you for your support.


Q01: What is a bone marrow or blood stem cell

transplant?

A: It’s a potentially life-saving treatment for patients

with MDS, leukemia, lymphoma, and other blood diseases. The transplanted healthy

stem cells from a donor replace a patient's unhealthy blood cells that have been

destroyed by chemotherapy.
 
 
Q02:  Are these the same stem cells

about which there exists so much controversy?

A:  No. Those are

embryonic stem cells—which are completely undifferentiated. Donors

would be providing blood stem cells where the extent of differentiation

is only the specific type of blood cell that will form.
 

Q03:  Does my blood type

matter?

A:  Not at all. The testing is for genotype (tissue type) and

not blood type.
 
 
Q04:  Who can be tested?   

A:

 Donors must be between the ages of 18 and 60, in good general health and be

free of chronic diseases. For example, volunteers with serious asthma, Hepatitis

 B or C or most forms of cancer (regardless of whether in remission) cannot be

accepted.

 
Q05:  What is the procedure?
 
A: Testing

only takes a couple of minutes and, at worse, is as painless as giving blood.

Blood is drawn for testing and a consent form is filled out. In some instances,

a buccal swab (a sterile Q-tip which is rubbed along the wall of your inner

cheek to collect cells) is used.
 

Q06:  Does a person's race

or ethnicity affect matching?

A:  Because tissue type is inherited,

patients are most likely to match someone of their same race and ethnicity.

There is a special need to recruit more donors who are, for example, African

Americans, Native Americans, European Jews, Armenians, Hawaiians, Pacific

Islanders, Asians, Hispanics and Latinos. The reason why there are greater

number or donors needed for these groups is as a result of either purges of the

population (genocide, etc.) and/or relatively few people in the group in the

international registry. A match for Michael would be most likely come from those

of Eastern European Jewish descent.
 
 
Q07:  Where do I go to get

tested?
 
A:  Contact the NY Blood Bank [212-570-3441 / 310 East 67th Street] and

make an appointment for HLA typing. If you’re not in NY, go to

www.marrow.org or call 1-800-MARROW-2 to find the donor center nearest

you. Marrow.org will assist donors who wish to join the national registry. We

hope that you will join the national registry, however, if you do not wish to

join the registry [see Q13] or it’s difficult to make it to a blood center,

private kits are available from Tepnel Life Codes [800-915-3695]. Order the “HLA

[A][B][DR]” kit for $140. You will need to have a small vial of blood drawn.

Indicate to Tepnel that your test is for “Michael Brecker” and they will know to

whom to forward your results.
 

Q08: How much is the

testing and who pays for it?

A:  The test generally cost $40 to $95

depending on the donor center and the laboratory that completes the test.

Testing at the New York Blood Center is just $40.  However, if you’re African

American, Hispanic, Native American or Asian testing is free at

any donor center that’s part of the National Marrow Donor Program network

[800-MARROW-2]. More than 100 centers throughout the country—including the New

York Blood Center are part of the network. Following the initial testing, all

medical expenses are paid for by the patient or the patient’s

insurance.
 
 
Q09:  What is the test for?
 
A:  The test is to determine

whether a tissue-type match exists between the donor and the patient. More

specifically, potential donors [and the patient] are given an HLA or Human

Leukocyte Antigen test. Antigens are found on the surface of infection-fighting

white blood cells (leukocytes). A match between specific donor and recipient

antigens is critical to having a successful transplant (i.e., where the two

immune systems will not go to war with one another). Should you see your HLA

results, the numbers indicated are the identifying gene-pair markers (alleles)

that are responsible for your “A” antigen, for example, to be different than

someone else’s “A” antigen. In the fortuitous event you’re deemed a good match

after three specific antigens are compared, you will be asked for a second blood

test.
 

Q10:  What are the chances of my being

selected?

A:  As you might imagine, given the number of genes that need to match,

the overall chances are quite low…but the more people tested, the more likely

there will be a perfect match awaiting everyone.
 

Q11:  Has Michael’s

family been tested?
 
A:  Yes, both his siblings and children—none

match. There is also a rumor afloat [04AUG] that a match has been found for

Michael….regrettably, this is inaccurate.
 

Q12:  How are patients

actually matched with donors?

A:  The results of blood samples from

donors or umbilical cord blood units [see Q17] are added to different

registries. The registries are then searched for a donor whose tissue type

matches that of their patient.
 

Q13:  Can I be tested to be

a donor only for Michael?

A:  Yes, but on behalf of Michael, we hope

that you would not embrace this alternative. Explains Michael, “I hope to

encourage as many people as possible to get tested not just to assist me, but to

help thousands of others who are either facing or who will be facing the same

challenge with which I’m now confronted.”  Should you nonetheless wish to make a

donation only for Michael, private kits are available from Tepnel Life Codes

[see Q07].  

Q14:  If I’m not eligible or prefer not to be

a donor, is there anything else I can do to help?

A;  [1]  Please

encourage everyone you know to be a donor irrespective of whether they may be a

possible match for Michael. There are many people in the same situation as

Michael that are in need of a donor. [2] You can organize a local donor drive in

your community. For more information on doing so, please contact Michael’s

management at 212.302.9200 or info@michaelbrecker.com. [3] Send a tax deductible

donation to The Marrow Foundation [payable to: The Marrow Foundation;

memo line: Time Is of the Essence Fund].  All monies will be exclusively

used for the testing of potential donors—not those who just wish to assist

Michael, but donors willing to join the international

registry.

The Marrow

Foundation
Time is of the Essence Fund
400 Seventh Street, NW, Suite

206
Washington, DC  20004

 

Q15:  Is there a difference between a bone marrow

transplant and blood stem cell transplant?

A:  Yes…and no. As a

result of new technologies, the term “bone marrow transplant” is in part a

misnomer. In earlier years marrow had be extracted from a donor’s marrow.

Today at leading cancer centers like Memorial Sloan Kettering, the collecting

process rarely occurs this way. A donor is simply connected to a machine through

an IV that separates and harvests the blood stem cells from the donor’s blood

before the blood returns to the donor through a second IV. Instead of being

tethered to a machine for a few hours, some folks still prefer direct marrow

collection—where medical technology has also improved. Following anesthesia,

marrow—-which continually replenishes every 4-6 weeks—is withdrawn using fine

hollow needles in the hip. A sore bottom may result for a few days. In short,

whatever the brief discomfort of whichever method that’s used—it’s nothing

compared to the virtue and humanity of potentially saving a life.


Q16: Can I take my name off the donor registry at any

time?
 
A:  Yes, being on the registry just means that

you may be asked to be a donor. It is strongly preferred, however, that

you remove your name from the registry if you feel you may be disinclined to be

a donor. Nothing may be as heartbreaking as someone having to learn that there

exists a perfect match to save the life of a loved one…and the donor changed

their mind about being a donor. Being a donor is not deleterious to your health.

While we hope that you become a donor, please do not add your name to any donor

registry if you’re not prepared to step-up when the opportunity presents itself.

 
 
 
Q17: If I am a match, who pays for the necessary

procedures?

A:  If you are a match, the patient's insurance pays for

the entire procedure—there is no cost to you. This includes the cost of the

physical you will receive to ensure that you’re in good health.

 
 
Q18:  I’ve heard about “cord donations” and stem cells from

umbilical cords—what’s that?

If you or anyone you know is having a

child, inform the obstetrician that you would like the umbilical cord to be

delivered to a cord blood bank where it is tested and where the blood stem cells

are frozen for future use in the event of a match. The collection does not pose

any health risk to the mother or baby and does not affect the birth process in

any way. The cord would otherwise simply be disposed of.

For further information on donating umbilical cord

donations:
http://www.nationalcordbloodprogram.org

For ordering a private HLA

kit:
http://www.bonemarrowtest.com/getting_tested/pricing_kit_ordering/index.asp

For further information on whether you qualify as

a donor:
http://www.marrow.org/HELP/marrow_eligibility_guidelines.html

For  learning where to get tested at a National

Marrow Donor Program blood center:
http://www.marrow.org/cgi-bin/NETWORK/map.pl?ctr_typ=DC