First impressions...

I've been thinking about what I want to say in this forum for the past several days. Should I talk about my relationship with Dr. Ab Guha, who has been my friend, mentor, and advisor for almost two decades, and is now in hospital diagnosed with AML. About the numerous ways in which he has helped people, locally and around the world, both professionally and personally? Maybe I should discuss the terrible need that patients with leukemia and their families must feel when informed that their best chance of survival is with a stem cell transplant. Or, perhaps I should clarify how the donor matching system works, in order to increase awareness among readers and encourage further registration.

I'll eventually write about all of these things on this site. But tonight, I want to tell you about 'Amanda,' a little girl I met in 1998, before I even started my medical training, at the Hospital for Sick Children (HSC).

I met Amanda when I volunteered to read to young patients in the hospital library. She was 9 years old when we met, and by then had been admitted for almost 2 months with a relapse of her leukemia. Her chemotherapy wasn't doing what her doctors and family had hoped it would, and her best hope for recovery was to receive a bone marrow transplant. She had one younger sister and a half-brother, neither of whom turned out to be matches for her. Thus, her team had applied to the Canadian donor registry to conduct an international search for potential donors. Back then, there were 5.4 million donors registered worldwide, fewer than half the number registered today.

At the time, I had already been a blood donor for several years, but hadn't really thought about becoming a bone marrow donor. Part of the reason for this was that bone marrow donation wasn't at all prominent in the public consciousness in 1998. Canadian Blood Services (CBS) had just been created in the aftermath of the Krever inquiry into the hepatitis C/HIV tainted blood fiasco, and had not yet incorporated the Unrelated Bone Marrow Donor Registry (UBMDR). Prior to this, the UBMDR, as far as I can remember, didn't really advertise itself much, and the only people who seemed to be aware of it were those in the medical profession, cancer patients and their families.

I first learned about the registry through my friendship with Amanda. I volunteered at the HSC library often back then, so I was able to see Amanda and her family frequently; she enjoyed listening to me read, and I enjoyed her company. So it was heart-wrenching to watch as, day after day, the registry was unable to turn up a match. Needless to say, I registered myself as soon as I could, but haven't been lucky enough to be called to this very day.

Amanda's condition worsened gradually, until she finally passed away three months after we first met. Two weeks before she died, she gave me a little yellow Teletubbie doll, Laa-Laa, a joke we shared on a play on my last name.

The infra-structure in place for donor registration has improved significantly since then, but there's still a long way to go. Information is getting out to the public mostly through the concerted efforts of patients and their families and friends; OneMatch, the ultimate offspring of the UBMDR, is working on several avenues of community awareness, and will hopefully soon introduce a comprehensive campaign to help build up the registry here in Canada.

So here's to the memory of Amanda, and all the other Amandas out there; here's to the hope of finding matches for those still waiting, including Dr. Guha. Please help support this worthy cause, and register to become a stem cell donor: online (http://www.onematch.ca/), over the phone (1-888-2DONATE), or in person at "Swab-A-Thon", our donor recruitment drive this Sunday, September 28, at The Tagore Centre, 140 Millwick Drive, from 11 am to 3 pm.

-Prateek Lala

What's it like to get the call? The donor's perspective.

Can you imagine how you would feel if you got the call to donate? SAMAR, the South Asian Marrow Association of Recruiters, in the US has incredibly moving testimonies from donors.

"It's amazing ..this is the first time two unrelated people with the same last name have matched. Patel meets Patel for the first time a year after the transplant. "Always keep hope, there is someone who is going to help you. It has given me a new outlook in life" says Jay Patel. His donor Vikram Patel said he was happy being a marrow donor because it saved a young boy's life. "People in the community should come forward to donate this precious gift of life"."

ASAD is thrilled to be working with SAMAR to bring registration drives to even more South Asian communities in the US. Take action, connect with ASAD or SAMAR and bring an awareness event or registration drive to your area!

ASAD is already making a difference!

Since the beginning of ASAD's campaign on August 10, 2008, more than 200 people with a South Asian background have registered; in July 2008, that number was 38 according to OneMatch.

There are now about 5000 people of South Asian descent (about 2 %) in the OneMatch Stem Cell and Marrow Network out of a total of approximately 230,000 men and women across Canada who are willing to donate stem cells or bone marrow.

ASAD is targeting community organizations, religious institutions, social networks and more, in order to reach the approximately half a million South Asians who live in the Greater Toronto Area alone. Spread the word.

The Appeal for South Asian Donors

The Appeal for South Asian Donors (ASAD) asks South Asians and other minorities to join the OneMatch Stem Cell and Marrow Network to help ease the waitlist for stem cell and bone marrow transplants. According to the U.S. National Cancer Institute, among different ethnic groups, the probability of finding a good match is 93% for North American Caucasians; African Americans and Asians have only a 50% chance.

The best hope for any patient is a match from someone in his ethnic community. One such patient is Dr. Abhijit Guha, a prominent Toronto-based neurosurgeon, cancer researcher, and tireless advocate within the South Asian community, who was diagnosed with acute myelogenous leukemia in August. He is one of 20 South Asians like Haider Choudhury who cannot find a stem cell match within their own families.

Many more donors from all ethnic communities, including South Asian, are needed to develop a registry that reflects the needs of all patients as 70% of patients must rely on donated stem cells. Although there are approximately 230,000 men and women across Canada registered to donate stem cells or bone marrow and patients have access to a world-wide network of potential donors, almost 600 individuals still wait for a transplant.

ASAD is committed to increasing awareness by targeting community organizations, temples and other religious institutions, and social networks in order to reach the approximately half a million South Asians who live in the GTA alone. In Canada, 5000 people of South Asian descent (about 2 %) are already registered with the OneMatch network. Since the launch of ASAD’s campaign at the beginning of August 2008, more than 200 people have joined for the OneMatch.

ASAD asks all Canadians to participate in this campaign by visiting OneMatch.ca to register with the OneMatch Stem Cell and Marrow Network, managed by Canadian Blood Services. Only individuals between the ages of 17 and 50 are eligible to donate. It’s free, easy and quick. Within days, Canadian Blood Services will confirm participation in the registry and mail a registration kit with cotton swabs. Applicants take a cheek swab to collect a DNA sample, then place it in a sealable vial and send it back.