We hope to see you Sunday at the Swab-a-thon!

It's finally here - the Swab-a-thon and Stem Cell Awareness Event!

We have our fingers crossed that we'll have a fabulous turnout. Can you imagine if you end up being a match for Dr. Abhijit Guha or Carolyn Tam or anyone else waiting for a transplant?

Even if that's not the case, we have made the effort to get people thinking about registration. Every story in the media, facebook page, e-mail, conversation - they all matter. It's like that Gandhi quote: "We need to be the change we wish to see in the world."

Fill out a form, take a cheek swab - it's the first step towards change.

More details on the event can be found here. The map is here.

Hope to see you at The Tagore Centre!

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

How to get to the Donor Drive...

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Remember this Sunday the 28th, 11am-3pm...

Why am I here?

It seems like only a few months ago, but in reality it has been 15 years since I first met with Dr. Guha professionally. I was a younger -I thought smarter- know-it-all who was having a tough time deciding what to do with my summer and whether or not to proceed with physical sciences or do what 90% of us South Asians were bred to do, medicine.

After a rough week of door-to-door canvassing of doctors, surgeons, clinics, even a few mystics, I came across a very unassuming Dr. Guha. I had no idea how well known he was, and he gave me no cause to think on it. Then, as now, he was humble. He opened his office and lab to me for no other reason than to give me a chance. Well that began 5 years of continuous work in his lab, surrounded by his loyal colleagues who spoke of him with only admiration. Never any gossip, no controversy, just describing a man who gives and does hard, hard work, in public service.

Why he gave me that break, I don't know. Looking back I certainly would not have! But he is that kind of guy. He helps others -be they community member or stranger.

Since then I had largely fallen out of touch with him and his lab. But there were things I never forgot. I dreaded those awful 6am meetings he was insane enough to schedule, but I thought, if this old man can get up, speak with us for an hour, stay on his feet during surgery for 8 hours, then run a clinic, then crawl home and spend sometime with his family, who am I to complain of a ridiculous commute? We all grumbled, but the donuts he unknowingly paid for, helped :D

Ab allowed me to fail. He must feel that there is something to be learned, and that it is worth paying for. Indeed, all those hours pouring through papers well beyond my years, performing experiments, honing some minor surgical skills (if you ever need a stitch-me-up, I'm your man), have stood me in great stead. I managed to go through grad school having already acquired many of the skills others were just starting to become acquainted with. I was dragged to conferences where I was the youngest presenter, forced to stand starkly in a crowd of scientists where clearly out-of-my-depth. But he did not strand me. Dr. Guha stood by silently, always ready to answer the questions I could not. This all translated into an amazingly confident young man presenting to even larger audiences and congresses just a few years later! Abhijit has taught me to be tough, somewhat diplomatic, and never give up.

Foremost, Dr. Guha taught me one thing: MEDICINE IS NOT FOR ME! A very valuable, but costly experiment he didn't mind footing the bill for.

So why exactly am I here? Is it because I owe him? Is it because he is a friend who needs help? Maybe because he is needed by those patients whose lives he has yet still to touch? No. Really it is because he has shown me what it is to give of one self, without any expectation of personal return. I hope to become a little bit more like him to become a better person -as selfish as that is!

It doesn't end after finding his match. I have had the good fortune to be working with some stellar folks who give their time and energy for no obvious reason. I have met Ash (a great leader) and Piali (who doesn't even know Khoka Dada), reacquainted with Prateek (who taught me a lot back then working with Ab and continues to impress), talked to Tamu Townsend whose brother Emru just had a transplant and had a lot of selfless advice, as well as both Anuradhas who are taking the initiative. I welcome the opportunity to continue to work with them, and with YOU!

So if you haven't already, REGISTER!!!! Instructions are here, everywhere. Get OTHERS to register. If you are in the GTA, come to our event this Sunday, otherwise go online. That's all. Really, this is what is important at this point and all else should take a back seat, so unless our conversation will have the words stem cell in there somewhere, they can wait.

Four days to go - Swab-a-thon in Toronto

It's hard to believe that the Swab-a-thon aka Awareness Event is almost here. Not only is the word getting out there, but the effort to find a donor for Dr. Abhijit Guha is also getting media attention.

Angie Seth of OMNI News: South Asian Edition did a two-part series on the need to increase South Asian participation in the OneMatch Stem Cell and Marrow Network on Monday and Tuesday.

Aparita Bhandari has also brought up the drive a few weeks ago on CBC Radio One's Metro Morning, the Toronto morning show with Andy Barrie on 99.1 FM. She will be talking about it again on Thursday morning. UPDATE: It was a lovely piece with an interview with Abhijit Guha, very sensitively done. The audio is available at Metro Morning for the week. And Andy Barrie mentioned the Swab-a-thon. Yeah!

We've also been approached by Tamu Townsend of Montreal, whose brother Emru just received a transplant. They worked really hard to increase ethnic participation in the registry. Carolyn Tam, who is waiting for a transplant, and was also the driving force to bring East Asians to OneMatch, has also given our support.

Their response and networks reminds us how interconnected we all are and how we can all work to help each other!

Please pass on the message and let's help the almost 600 people waiting in Canada for a transplant. Could you be the one?

Why get involved with recruiting donors?

The answer is easy. How often do you get the chance to affect one person's life for the better?

My cousin Ronnie has a number of projects going on in India to help improve the lives of the poor. His motto is "Each one, teach one." He believes if every person of means in India helped out just one person with school fees or microcredit loans, imagine the kind of change that could be unleashed.

What works better for me is "Each one, reach one." Even though I have already forwarded messages about the upcoming Swab-a-thon here in Toronto or posted a note on our Facebook pages, it's when I actually reach out and check in with my friends, answer their questions, remind them about the statistics or how more people donate stem cells through a blood donation process rather than through a bone marrow transplant, that a few more friends ACT and register. Each one, reach one. And repeat.

I'm probably not going to save the world anytime soon. I'm not working on some fabulous vaccine or hydrogen-fuelled car. But I can spread the word to register with OneMatch or pass along the recruitment message that we need more South Asians, well, more people of all backgrounds, to participate.

And so can you. Each one, reach one.

Piali

Doctor seeks bone marrow donor: Torontonian needs a match from a South Asian

Here's an article about Dr. Guha from the Vancouver Sun. Reporter Allison Cross has this to say,

Besides his neurosurgery practice at Western Hospital, Guha runs a research laboratory and lectures frequently, but says he enjoys returning to Calcutta for humanitarian work.

For the past 10 years, he has helped run a hospital in India that treats poor residents, and hopes to help open another facility with 150 beds within the next year.

"I'm hopeful," he said of his condition. "I've had one strike against me with this chemotherapy not working. But there's still hope that this could be a curable thing."

Saturday, August 30, 2008

University Health Network's Appeal for Bengali Donors

We're posting this a little late, but this is a message that was circulating throught the University Health Network and the University of Toronto two weeks ago. It's why we're here.

Dear Colleagues,

One of our UHN family, Dr. Ab Guha, has been recently diagnosed with Acute Myeloid Leukemia. Ab is receiving first class care from the team at PMH. His partners and colleagues are ensuring that Ab’s substantial responsibilities in patient care, research and education are being looked after in his absence. There is an urgent need to locate a bone marrow donor for Dr. Guha. If you know someone in the Bengali community, please encourage them to be tested and register as a bone marrow donor. Additional information can be obtained at http://www.onematch.ca/.

Bob

MatchPia's Drive for South Asian Donors

MatchPia is one of those amazing examples of what a grassroots movement can accomplish. In a period of two years, they recruited more than 30,000 people in over 400 donor drives throughout almost 300 cities in the United States. According to the National Marrow Donor Program, MatchPia's accomplishment means that every year 15 patients will probably receive their transplant for the next 10 years. Amazing!

Best of all, Pia Awal found her match - not in the US, but in the UK - which goes to show, the solution is both local and global.

Now it's our turn. Register with OneMatch.ca and spread the word. If you are in Toronto, consider dropping by our Stem Cell Awareness Event or Swab-a-thon on Sunday, September 28, 2008 at The Tagore Centre. Canadian Blood Services will be there to answer questions and take buccal swabs for the registry.

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.

Bone marrow donors could help save little Alishba

Little Alishba Qamer is waiting for a miracle, for someone to save her life, after doctors gave her just two months to live in May. (Birmingham Post, August 4, 2008)

Alishba is 9 months old and needs a bone marrow transplant. Her family is working with The Anthony Nolan Trust to increase awareness and donor registration.

"Izra Iqbal, the charity’s donor recruitment manager, explained that of the 396,000 people on the national register, only four per cent are of South Asian origin.

“There is a real lack of awareness in people from ethnic communities. There are no long-term side effects in joining the register and it can really help the community around you.”"

Here in Canada, only two per cent of people on the OneMatch Stem Cell and Marrow Network are of South Asian origin.

Swab-A-Thon!

Come Sunday, September 28th, to North York to show your support for Dr. Guha and the 500+ others waiting for their matches. This will be a fast, fun, event where Canadian Blood Services staff will be present to answer your questions and address your concerns. We will provide the venue and swab kits for you to do your part.

You MUST bring your health card, be aged 17-50, with no history of heart problems, cancer or any infectious, communicable diseases.

It takes place between 11 am to 3 pm at The Tagore Centre, 140 Millwick Drive (near the intersection of Steeles Ave West and Islington Ave.).

CORRECTION: You must bring some I.D., your health card is not necessary. Thanks for the update, Soumo.

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.