While visiting Boston on business, I learned some shocking news this past weekend. My good friend Sonia was diagnosed with Acute Myelogenous Leukemia (AML) about 10 days ago. She is currently undergoing chemotherapy. She is 24 and in urgent need of a bone marrow transplant. I am still in shock and having a hard time absorbing this. Since I have known her, I cannot imagine her as being anything other than the cheerful, always smiling, bollywood-movie-loving, happy and positive person that I have known her to be. She is an active member of the South Asian community and many may recognized her contributions as a board member of NetSAP Boston. I pray she finds a donor soon.
Team Sonia – Sonia’s brother Sumit Rai, family and friends are organizing drives today and in the next few weeks. Please take the time to help spread the word about the drives and join the NMDP registry if you have not already done so. You can visit www.curesonia.org, or visit their Facebook page.
As you may be aware from our previous posts on the topic, the National Bone Marrow Registry (NMDP) is in dire need of more ethnic donors. South Asians, as well as any minority, and especially people of mixed ethnicity are needed. Sonia is currently receiving excellent care at Massachusetts General Hospital in Boston, but in order to survive beyond the next few months, she requires a bone marrow transplant. Most matches occur within ethniticty and increasing the number of South Asians registered as potential bone marrow donors will help Sonia as well as many others who are searching.
Among the 7 million registered donors currently, approximately, only 2% are South Asians. Ethnic Minorities have a 30-40% chance of finding a match from the existing NMDP registry. Caucasians have an 80% chance of finding a match from the existing NMDP registry [link]. The saddest truth of this process for a patient is that finding a match is not sufficient. I attended a talk by a Samar representative who mentioned a South Asian patient. After a lengthy search, he found a match and moved to the Seattle area. Unfortunately just before the donation process, the donor backed out. Another patient had 4 matches that did not work out.
Approximately 50% of all Ethnic Minority donors will NOT push through with donating if called as a possible match for a patient. (whether because they are unreachable, they say “no”, or become medically ineligible). Whereas over 70% of Caucasian donors WILL proceed with donating if called as a possible match [link].
What can you do?
Learn about AML and what committment it takes to be a donor. The process has gotten a lot simpler over the years. It does not take a blood test or a needle, only a simple, non-invasive cheek cell sample to become registered. If you are contacted as potential match, learn about what is involved. Learn about some of the facts and myths.
What Sonia and others like her need are committed and available donors. This holiday season, spend a small amount of your time and be the miracle someone is praying for. Find a drive organized by Team Sonia. For the most current information, visit their Facebook page. Here are some upcoming events I found starting today. Team Sonia plans to organize more events on the East Coast as well:
Bone Marrow Donor Registration Drive: Nachi’s Birthday. Where : 25 Lusk Street, San Francisco, CA. When : Today from 18:00 to 21:00
Bone Marrow Donor Registration Drive: Darbar-E-Khalsa. Where : Pomona Fairplex, 1101 W. McKinley Ave, Pomona, CA. When : Saturday 25 December from 11:00 to 17:00.
Bone Marrow Donor Registration Drive: Fremont Gurdwara. Where : Fremont Gurdwara, 196 Gurdwara Road, Fremont, CA. When : Sunday 26 December from 10:00 to 14:00.
Bone Marrow Donor Registration Drive: El Sobrante Gurdwara. Where : El Sobrante Gurdwara, 3550 Hill Crest Road, El Sobrante, CA. When : Sunday 26 December from 10:30 to 14:00.
Bone Marrow Donor Registration Drive: Livermore Temple Where : Shiva-Visnu Temple, 1232 Arrowhead Ave, Livermore, CA When : Sunday 26 December from 11:00 to 15:00
Bone Marrow Donor Registration Drive: Sunnyvale Temple Where : Sunnyvale Temple, 420-450 Persian Drive, Sunnyvale, CA When : Saturday 1 January 2011 from 11:00 to 17:00
Bone Marrow Donor Registration Drive: Los Angeles New Years Drive Where : Valley Hindu Temple, 18700 Roscoe Blvd, Northridge, CA When : Saturday 1 January 2011 from 11:00 to 17:00
or learn about how to join and become registered.
STAY IN TOUCH
I gave my email address when I joined, and now I get a monthly newsletter which also contains my Donor Center and Record information and a convenient link to update my contact information. If you have already registered, stay committed to this cause. Remember to update your contact information.
SPREAD THE WORD
Even if you are already registered, you can still do more. Email, blog, tweet about it and spread awareness using your favorite networking media.