Silicon Valley Moms Blog hosting a BONE MARROW DRIVE - April 19th ... Please help us spread the word!

This was originally posted on Silicon Valley Moms Blog on 3/19/08.  We are reposting and asking that you help us spread the word about the Marrow Drive! If you have linked to this post, can you please leave a comment below so we can "thank you" (and please provide a link to your post)!

I have become an expert on Leukemia.  Since my mom was diagnosed with AML in December 2007, I can rattle off all the different types of Leukemia; AML, CML, CLL, ALL ... I can chat about the different subtypes.  I can tell you about induction chemotherapy, consolidation chemotherapy and now bone marrow transplants. Do I get a prize for my three month crash course into this terrible disease?  Actually, I hope that my gift is a healthy mother who will be alive for many years to come.  I pray that she will sail through the next few months of consolidation chemotherapy, and a mini bone marrow transplant.  I pray that she will survive and begin her "new" life..... leukemic free.

These past few months we have been on an emotional roller coaster of chemotherapy and getting Mom into remission.  I must admit, I have felt helpless as we waited day to day to see if her body would show no signs of leukemic blasts in her peripheral blood and marrow.  I stood by helplessly, as another bone marrow biopsy was done.  I stood by the side, as they told us that leukemic cells were still in her marrow or peripheral blood. I stood by as we learned that my Uncle is NOT a bone marrow match. I stood by as they FINALLY said that it "looks like Mom is in remission". But here is the reality: My "being there" made no difference if the chemotherapy worked, or not. For me, this was the hardest... not being able to do anything to make the situation better. My being there did not mean a cure or remission. I just had to sit there, be positive.  Be supportive. 

So now that my mother is FINALLY "in remission" and the doctors believe that a bone marrow donor will be identified, I wanted to do something in Silicon Valley that can make a difference for other families going through the awful diagnosis of leukemia.  To be clear, this will not directly benefit my Mother, who has already been matched with a donor.  However, for many other patients, long term remission (or a cure) will depend on a bone marrow transplant.  So....the only "productive" thing I could think of was to hold a MARROW DRIVE, in honor (NOT MEMORY) of my mother, who will receive a transplant in May 2008.  With the help of many friends (a huge thank you to Enoch Choi), family members and PAMP, I am pleading with the Silicon Valley Community to become a marrow donor by participating in our drive.  Please come out and support our efforts... please allow the National Marrow Donor Program (NMDP) to take a swab of your saliva. (For those of you who are scared, this is NOT a blood test.  No needles are involved that day!) Please agree that if you are ever contacted by the National Marrow Donor Program (NMDP), you will agree to donate a piece of your marrow.  You can help give the gift of life....

• Date:  Saturday, April 19, 2008
• Location:  95 Crescent Drive, Palo Alto, CA  94301 (right near highway 101)
• Time:  9:00am to 3:30pm
• To be eligible to donate, you must be between the ages of 18 to 60.

When I was at Stanford Hospital visiting my mother, I met MANY leukemic patients who were desperately waiting to find a bone marrow match.  Most of these patients were of mixed or minority races, especially Asian, Hispanic, African American, Indian, Asia Pacific and American Indian ethnicities.  So to these groups, I am making an extra plea.... Please help us spread the word......

Respectfully, Jill Asher (Co-Founder of Silicon Valley Moms Blog)

Here is more information about the National Marrow Donor Program:

About the National Marrow Donor Program

The National Marrow Donor Program (NMDP) saves lives. The non-profit organization facilitates unrelated marrow and cord blood transplants as a single point of access. It connects doctors, donors and researchers to the resources they need to help more people live longer and healthier lives. Its role is critical because there is a vast and long-standing collaborative network of national and international leading medical facilities involved in the marrow and cord blood transplantation process.

Statistics about the Need for Donors
• Every year, more than 10,000 Americans get life-threatening diseases that can only be cured with a bone marrow transplant from an unrelated donor. The patients do not have a family donor and transplant is their only hope for a cure.
• Currently, every search conducted through the NMDP provides patients with access to more than 11 million donors and more than 290,000 cord blood units on global registries.
• Only 30 percent of patients find a matched donor in their family. The other 70 percent can turn to the NMDP to search for an unrelated donor or cord blood unit.

Statistics about the NMDP’s Life-saving Work
• The NMDP works with leading transplant centers and donor registries in 35 countries around the world. Every search submitted to the NMDP includes a search of international registries to help patients find the best potential match.
• Since it began operations in 1987, the NMDP has facilitated more than 30,000 marrow and cord blood transplants to give patients a second chance at life.
• In 2007, the NMDP facilitated more than 3,700 total transplants – including nearly 650 cord blood transplants – helping the largest number of patients ever in a single year. Seventy-one percent of adult donors – more than 2,100 – provided peripheral blood stem cell donations, while 29 percent donated marrow.

Steps to Join the NMDP Registry:
• Complete registration form and sign agreement to join the Registry.
• Pay for tissue typing costs – though there is no cost to register for minorities because the NMDP is working to increase the number of minority donors.
• Give either a swab of cheek cells or a blood sample so your tissue type can be tested.
• Volunteers can also join the NMDP Registry online by visiting www.marrow.org/join.

The Need for Diverse Donors

Why would a person’s race or ethnicity make it harder to find a match?

• Because tissue type is inherited, patients are most likely to match someone of their same race or ethnicity. Some racial and ethnic groups also have greater diversity of tissue types than others. The more uncommon a person’s tissue type, the more challenging it will be to find a match. The NMDP is working to increase the diversity of the Registry to improve all patients’ chances of finding a donor.

• While the likelihood of finding a donor has increased accordingly with the size and diversity of the Registry, there is still a special need to recruit more donors who are: Black, African American, American Indian, Alaska Native, Asian, Native Hawaiian, Pacific Islander, Hispanic and Latino.

• Disparities in access to health care, including insurance coverage, limit the number of patients who are referred for transplant. Only 51 percent of patients who need a transplant begin a formal search for a matched donor. Of the patients who do search the Registry for a donor, only about 36 percent of patients will get a transplant. One of the main reasons 64 percent of searching patients don’t get the transplant they need is because there are not enough diverse donors on the Registry.

Why are minorities underrepresented on the NMDP Registry?

• Overall, minorities are underrepresented on the NMDP Registry because more awareness is needed about the donation process. Also, there is a high level of misperception in minority communities about what marrow donation really entails, as well as a general skepticism of the medical establishment.

• It is really important to dispel the myths about marrow donation in minority communities.

• It is important for people to realize that there is no cost for minorities to join the Registry. And there is NO FINANCIAL COST to donate marrow should someone be asked to be a donor. The procedure is paid for by the patient’s insurance or the patient directly. And the NMDP works extensively with businesses to encourage them to allow their employees to take paid time off to donate marrow, even working with individual donors’ employers.

Likelihood of Finding a Match

• African Americans have approximately a 60 percent likelihood of finding at least one potential match on the NMDP Registry.

• Caucasians have approximately an 88 percent chance of finding at least one potential match on the NMDP Registry.

• Hispanics have approximately an 81 percent chance of finding at least one potential match on the NMDP Registry.

• Asians have approximately a 78 percent chance of finding at least one potential match on the NMDP Registry.

• American Indians/Alaska Natives have approximately 82 percent chance of finding at least one potential match on the NMDP Registry.

But, finding a matched donor on the NMDP Registry is only the beginning. If a match is found, then it must be determined if the donor is available to donate. Availability of donors ranges from approximately 40 to 70 percent, depending on race. Overall, minority donor availability is less than 50 percent.

Myths and Facts about Marrow Donation

Myth: Marrow donation is painful
Fact: Marrow donation procedures are done under general or regional anesthesia so the donor experiences no pain during the collection procedure.

Myth: Pieces of bone are removed from the donor
Fact: Marrow donation involves transplant of the liquid marrow found inside of the bone. No pieces of bone are removed from the donor. During a surgical procedure in an operating room, special, hollow needles are used to withdraw liquid marrow from the donor's pelvic bones.

Myth: No anesthesia is used for marrow donation 
Fact: Marrow donation procedures are always done when the donor is under general or regional anesthesia. Sometimes television shows or movies confuse marrow donation with a bone marrow biopsy. A biopsy is a diagnostic procedure performed on patients, not marrow donors. Bone marrow biopsies are not the same as marrow transplants.

Myth: All marrow donations involve surgery 
Fact: Donors may be asked to donate marrow, which is a surgical procedure, or peripheral blood stem cells (PBSC). PBSC donation is a non-surgical procedure done in an outpatient clinic.

PBSC donation involves removing a donor’s blood through a sterile needle in one arm. The blood is passed through a machine that separates out the cells used in transplantation. The remaining blood is returned through the other arm.

The patient’s doctor will decide what type of donation is best for the patient.

Myth: Marrow donation involves a lengthy recovery process
Fact: Marrow donors can expect to feel some soreness in their lower back for a few days or longer. Donors also have reported feeling tired and having some discomfort walking. Most donors are back to their usual routine in a few days. Some may take a few weeks before they feel completely recovered.

PBSC donors report varying symptoms including headache, bone or muscle pain, nausea, insomnia and fatigue. These effects disappear shortly after donating.

Myth: Marrow donation weakens the donor   
Fact: A donor's marrow is completely replaced within four to six weeks. After donating, most donors are back to their usual routine in a few days.

About Cord Blood Donation
• Increasingly, patients with leukemia, lymphoma and other life-threatening diseases are being treated with publicly donated cord blood; they are among the 70 percent of people who do not have a suitably matched person within their family. These patients turn to the NMDP Registry of donated cord blood and adult donors to find a match to potentially save their lives.

• Since 2004, the number of cord blood transplants facilitated by the NMDP has nearly doubled each year, and the NMDP has now facilitated almost 2,000 transplants using publicly donated cord blood.

• It is important for people to know there is no charge for expectant parents to donate umbilical cord blood to a public cord blood bank. Public cord blood banks cover the costs to collect, test and store umbilical cord blood, which means collections are limited to specific hospitals that work with a cord blood bank.

The current breakdown of the NMDP Registry by race and ethnicity:

Minority Potential Donors on the Registry	Number Percent of Total Registry
Minority (includes racial and ethnic minorities)	More than 1.8 million 27%

Potential Donors on the Registry by Race	Number Percent of Total Registry
African American or Black	More than 515,000 8%
American Indian/Alaska Native	Nearly 80,000 1%
Asian	More than 450,000 7%
Caucasian	More than 5 million 73%
Multiple Race	More than 180,000 3%
Native Hawaiian or Other Pacific Islander	More than 8,700 0.1%

Potential Donors on the Registry by Ethnicity	Number Percent of Total Registry
Hispanic or Latino (total number indicating Hispanic or Latino ethnicity or race)	More than 650,000 10%

If you are interested in becoming a donor, please contact the Bone Marrow Registry .