Monday, July 12, 2004

New website

Please visit the new website at www.matchpia.org






Friday, July 09, 2004

To speed up the matching process for Pia ....

PLEASE FOLLOW THESE INSTRUCTIONS

To speed up the matching process for Pia, request a copy of your 'HLA typing' when you get tested. Please ask on the day how you can best obtain this information.

When you have your HLA typing (it might take 4 - 6 weeks), please fax it directly to Sinda Lee at Memorial Sloan-Kettering Cancer Center. Make it clear that you are sending the fax in relation to patient Pia Awal. She will check whether or not you are a potential match.

The fax details are:
Attn: Sinda Lee, Transplant Coordinator
Re: Pia Awal
Memorial Sloan-Kettering Cancer Center
Fax: 212-717-3318

If you do not have access to a fax machine, you can also send your results by email to Friends of Pia. Just click here.

Saturday, July 03, 2004

The Bottomline About the Donor/Matching Process for stem cell transplants

If you are like most people, you will have a few basic questions about what it means to get tested. It's natural to be unsure and perhaps even a bit apprehensive. Here are the answers to some of your FAQ's. We urge you to take a moment out of your busy days and come get tested. It is painless and would only take a few minutes of your time.

What happens?

The actual type testing is just a blood test. Potential donors give less than a tube of blood, just like in the doctor's office. So that's fast and easy. The Red Cross does the tissue typing, and puts the donor in a national registry. If there ever is a match between a patient and a potential donor, the donor has to undergo a couple more higher level blood tests, because compatibility is so important.


Does it hurt?


No. The actual donation can be done in two ways: one is to harvest stem cells from the blood of the donor, the other is to draw roughly 2-5% of the donors marrow from the pelvic bone. The stem cell process is much like giving blood only you get it back less the stem cells. It is not painful. The bone marrow donation is done under local anesthesia and does not hurt. Once the anesthesia wears off, there remains dull pain for short while, but it is not nearly as painful as rumor has it. Many people mix up the process of donation with a marrow biopsy, which is indeed painful.

Can I donate?

The eligibility is similar to eligibility for blood donations but not the same: In particular, while people who have lived more than 6 months in Europe since 1980 are not eligible for blood donations, they are eligible for bone marrow donation."

Wednesday, June 30, 2004

Pia in the News ...

Pia Awal's story was covered by WABC Eyewitness News on Wednesday June 30th

WB-11 news at 10 also ran a story on Friday July 2nd.

And ... New York Newsday also published a blurb on her

Tuesday, June 29, 2004

Simple Overview of Donor Criteria

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Click here to read more about Pia

Donor Eligibility:
1) Donors need to be between the ages of 18 to 60. There is no minimum weight requirement.

2) Donors need to be in general good health.

The following health conditions are deferrals:

Those with Chronic, medication dependent Asthma
Those with severe back problems
Those who are diabetic and take medication
Those who have had cancer

Interested persons need only provide some basic medical information and then provide a small blood sample.
This blood is tissue-typed and the information is entered into the NMDP database. The information stays in the registry until
the registrant turns 61 or he or she requests that it be removed.

Once you are on the national data base,you have to make the commitment and be willing to donate your marrow/stem cells to anyone you may match.


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Monday, June 28, 2004

Is a bone marrow transplant the same as a stem cell transplant?

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A bone marrow transplant was the traditional way (and in some countries, still is) of doing a transplant. Stem cells are most abundant in the bone marrow. The donor had to go under general anasthesia and it was a pretty involved process, where marrow was extracted from the hip bone.

We are doing a drive to find a donor whose HLA profile matches that of Pia so that a stem cell transplant can be done. This basically minimizes the chance that her body will reject the donors stem cells.

The current procedure is much simpler than it was before. The donor, if a match will receive an injection which will release stem cells from the bone marrow into the bloodstream. A few days later the blood will be drawn, purged of the stem cells and then put back into the donor. It may involve some local discomfort, but nothing like general anasthesia. Then the cells get put into Pia's body and the wait begins to see if they will be accepted.

The reason that a person with the same ethnic background is more likely to match her HLA type is that the HLA markers are inherited from one's parents and as such are like DNA, except that the combinations are not infinite, but are similar by ethnicity. Hence the need for a South Asian donor.

Saturday, June 26, 2004

Fielding some of your FAQs

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The response to our appeal for help has been very positive. Many prospective donors have questions about the criteria for potential donors and the process of testing.

Frequently Asked Questions concerning eligibility for, and the process of, bone marrow donations are comprehensively answered here, but following is a brief summary:

*Grant money makes it also possible that non-caucasian donors are tested for free.
*The testing requires no bone marrow at all, just a vial of blood - like what you give during annual physical examinations. It's fast and easy.
*The National Marrow Donor Program does the tissue typing, and puts the donor in a national registry. If there ever is a match between a patient and a potential donor, the donor will be contacted. The donor will undergo a few higher level blood tests, because exact compatibility is so important.
*Should everything turn out right, the actual donation can be done in two ways: one is to harvest stem cells from the blood of the donor, the other is to draw roughly 6-9% of the donor’s marrow from the pelvic bone. This is done under local anesthesia and does not hurt. Once the anesthesia wears off, there remains a dull pain for a short while, but it is not nearly as painful as rumors have it (many people mix up the process of donation with a marrow biopsy, which is indeed painful). The marrow is easily replenished by your body.
*The eligibility is similar to that for blood donations but not the same: for example, people who have lived more than 6 months in Europe since 1980 are not eligible for blood donations, but they are eligible for bone marrow donation. There are further differences. Most importantly, the donor has to be between 18 to 61 years old.


Many have also expressed an interest in initiating blood test centers in their geographic area, whether that be California, Boston, or Chicago. Please contact
Mr. Mausam Khan of SAMAR (South Asian Marrow Assocation of Recruiters) 718-592-0821. If you can get more than ten people to volunteer to get tested, SAMAR will coordinate with the local Red Cross to set up a testing center in your area.

Last, but not least, to speed up the matching process for Pia, you can request a copy of your 'HLA typing' when you get tested. Please ask on the day how you can best obtain this information. When you have your HLA typing (it might take 4 - 6 weeks), please fax it directly to Sinda Lee at Memorial Sloan-Kettering Cancer Center. Make it clear that you are sending the fax in relation to patient Pia Awal. She will check whether or not
you are a potential match.

The fax details are:
Attn: Sinda Lee, Transplant Coordinator
Memorial Sloan-Kettering Cancer Center
Fax: 212-717-3318

Thursday, June 24, 2004

Pia's Story

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Until June 2002, Pia Awal had always been perfectly healthy. Then just days after her 27th birthday, she was suddenly diagnosed with Acute Myelogenous Leukemia (AML).

AML is a cancer of the blood. It is a disease where immature white blood cells reproduce at an alarming rate. Unable to fight infection through the production of healthy blood cells, the body suffers from intense fatigue, bone pain, nausea, low platelet count (leading to compromised clotting ability), and low immunity.

An inspiration to all who know her—her friends, family, and her students at Manhattan’s prestigious Dalton School where she taught 2nd grade for many years—Pia fought the cancer with fierce determination, a sense of humor, and a resilient spirit.


Pictured: Pia with Assistant Editor of Glamor Magazine, Erin Zammett. This image appeared in Glamor Magazine which published Erin's diary of her experience dealing with leukemia.

In March 2003, after surviving several grueling rounds of chemotherapy, Pia was declared cancer-free. Happier times came about with a recent proposal of marriage. The wedding of Pia and Tim is set for October 10, 2004.
On June 17, following a routine visit to Memorial Sloan Kettering Cancer Center, Pia learned that the cancer is back. Doctors say that her best chance for surviving this relapse is an aggressive round of chemotherapy, followed by a stem-cell transplant. Healthy stem-cells from donor blood will be inserted into her body to regenerate healthy blood cells. This, after her own blood cells have been destroyed by chemotherapy. It is not an easy road.

To date, Pia has been unable to find a related match for the stem-call transplant. At present, only less than 0.1 % of Indian population is registered with the Worldwide Bone Marrow Registry, with only 5,000 people registered in USA. Hence, whenever an Indian person needs a stem-cell or bone marrow transplant, it becomes extremely difficult to find the right match for him or her.

Pia’s friends and family, with the help of SAMAR (South Asian Marrow Association of Recruiters) are conducting several Blood Test Drives over the next two weeks in Manhattan, Queens, and New Jersey to help find a match for her. All it takes is someone to be of South Asian (Indian/Pakistani/Bangladeshi) origin, between 18-61 years old, and in generally good health.

The registration process is harmless and involves only having a small amount of blood drawn. The blood is HLA typed for a match and if successful, the donor will be asked to donate stem cells extracted from their blood, to save Pia’s life. All donors will be entered into the National Registry where they may be called upon to help someone else, if not Pia.

We make this appeal to each of you to save a life that holds hope and promise for the future. Please attend one of the drives being conducted in your area and get tested. You can also get HLA tested at your local Blood Center or American Red Cross.

It is never too early, but it can be too late to wait. It only takes one to make a match. For additional information, please email Friends of Pia or call one of the numbers listed below.

Blood Test Drives for Pia will take place at five convenient locations in Manhattan, New Jersey, and Queens from July 3 to July 18, 2004.

MANHATTAN

Tuesday July 6th, 10am – 4pm
Thursday July 8th, 3pm - 8pm
All Souls Church Chapel
1157 Lexington Avenue (bet. 79-80th St.)
Info: (212) 737-2469 or (646) 262-7032


QUEENS

Thursday July 8th, 2pm – 4pm
Saturday July 10th , 12 noon – 4pm
SAMAR
55-13 96th Street, Flushing, NY 11368
Info: (718) 592-0821
or click here to send e-mail


NEW JERSEY

Saturday July 3rd, 10 am – 4pm
Sunday July 4th, 10am – 4pm
FOKANA
Garden State Convention & Exhibit Center
Somerset, NJ 08873
Info: (718) 592-0821
or click here to send e-mail


Saturday July 10th, 12 noon – 7 pm
Sunday July 11th, 12 noon – 7pm
INDIA MELA
Soccer Center, 300 Memorial Drive, Somerset, NJ 08873
Info: (718) 592-0821
or click here to send e-mail


Sunday July 18th, 10:30 am – 2:30 pm
SADHU VASWANI CENTER
494 Durie Ave.
Closter, NJ 07627
Info: (201) 658-3829



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