Today, Together! Join Us in Support of CML Survivors Worldwide on 9/22

This Thursday, 9/22, The Max Foundation and My PCR will join the global CML community in raising our collective voices in support of the needs of people living with CML worldwide. Initiated by the patient community in 2008, September 22 (9/22) has marked World CML Day because of its symbolic significance – the disease is caused by the change of chromosomes 9 and 22. On this day, patients, advocates, physicians and caregivers across the globe come together to raise awareness about their needs to the general public, politicians, and medical professionals across the world.

World CML Day is also a significant date for the My PCR initiative as it marks four years since the initial launch of the campaign. The My PCR initiative is a patient driven global awareness effort, carried out in partnership with a coalition of CML-focused organizations that aims to increase awareness about the need to monitor CML treatment and the right of every patient to know their test results. This year, The Max Foundation and other My PCR partners worldwide are honoring 9/22 by engaging with their physicians through the My PCR “Treat Your Physician” grant initiative. Through My PCR, partners are awarded a grant to create a My PCR themed treat to say THANK YOU to their physicians for their dedication to patients and further open patient – physician dialogues about the role of PCR testing in the monitoring of CML.

Keep an eye out on social media all this week for photos and updates about “Treat Your Physician” activities around the world, and let’s make our voices heard!

Support Diagnostic Testing for Cancer Patients With A Cup of Chai

As I write this, I am at the beginning of the second year of Chai for Cancer USA, a fundraising campaign that began in my home country of India and has now spread across the United States. Supporters of The Max Foundation are hosting Chai Addas (tea parties) to raise awareness about the needs of cancer survivors in India, and to raise funds for their support while sharing a cup of chai with friends, neighbors, and family.

This year, Chai Addas will be hosted in many new cities, introducing The Max Foundation’s work to new friends across the United States and Canada. This support means the world to the patients I work with every day, because it provides access to the treatment they need to live with dignity, hope, and joy. I’d like to share a story with you that is close to my heart and is an example of how Chai for Cancer USA supports people facing cancer in India.

When he was initially diagnosed with chronic myeloid leukemia, Prashant’s first concerns weren’t whether he would be able to afford treatment, it was about how much time he had left…years? Months? Would he be able to complete his degree? Would he be able to care for his father?

But his doctor reassured him. Treatment was available, and before he could worry about the cost of it, Prashant was connected with The Max Foundation and worked on getting enrolled in the access program we administer.

Still, access to the free, life-saving treatment seemed blocked. In order to enroll, Prashant must first take a diagnostic blood test to confirm his diagnosis. This test would cost over 3,000 rupees ($50 USD), an unimaginable amount for Prashant and his father. Even a season’s full harvest wouldn’t cover the cost of the test. They felt hopeless.

Our colleague steps in to alleviate their distress. She gently shares that the cost of the diagnostic testing can be reimbursed for patients like Prashant. Along with gaining access to the life-saving cancer treatment, they also will receive support to pay for any diagnostic testing.

It was as if the sun burst into the windowless office. With his diagnostic test covered, Prashant was able to fully enroll in the treatment access program without the financial burden on his shoulders. Together, Prashant and his father left the office filled with relief.

Like Prashant, many patients in India cannot afford the cost of diagnostic tests, something that must be done repeatedly throughout their lives (typically four times each year) to ensure their treatment is working. The support we receive through Chai for Cancer USA allows them to take this necessary first step and begin their life-saving treatment. You can playing a vital role in making diagnostic tests are available to many in need – give today to support our patients! Thank you for making this possible.

How You Can Celebrate My Birthday and Support People Facing Cancer Around the World

Every year, I celebrate my birthday in a special way – I invite my friends and family to give to The Max Foundation in lieu of gifts to me. I believe in the work we do so deeply, that I can think of no greater way to celebrate my birthday than to donate it to the organization I have committed my life to. This year is no different, and as long as getting one year older was inevitable, I have proudly increased my target to raising a minimum of $5,800; $100 for each year of my life!

The work we do at The Max Foundation can be broken down into three parts: First, we aim to help patients gain access to life-saving treatment. Second, we develop education and support services for patients so they can maximize their lives despite their disease. Finally, we provide a platform for those survivors who decide to become advocates for others and represent the needs of people living with cancer in their community.

The Max Foundation is patient-centric at its core. We believe that every life is worth saving; that access to treatment, care, and support is an investment in the community, and a partnership with each patient. To understand the passion of The Max Foundation’s team, it is important to realize that each of our patients is our best friend; they are part of our family. We have shared our lives with each other for more than 15 years, and we are committed to doing everything in our power to support them.

So today, as my birthday is once again upon me, I ask for your help by making a monetary gift anytime until my birthday, July 28th through my Crowdrise page. Help me surpass my goal of raising $5,800 and show people facing cancer that they are not alone.

And if you are inspired to donate your own birthday, feel free to contact me directly; I will tell you how this simple act turns your birthday upside down and makes your life a thousand times more meaningful.

I thank you from the bottom of my heart,

Pat

Donate to my Birthday Fundraiser!

Chai for Cancer USA 2016: On the Road!

In July, we are kicking off the second year of Chai for Cancer USA, a fundraising campaign that expands access to treatment for people facing cancer in India. For 6 weeks, South Asia Region Head Viji Venkatesh will travel across the country to meet with our friends and supporters, bringing together our community in support of one of the greatest needs of cancer patients in India: diagnostic testing.

This is an era of great advances in cancer treatment – diagnostic testing brings newfound hope, but the cost is a barrier for those who cannot afford the tests required to benefit from free, life-saving treatment. At $50 (3,000 Rupees) per test, required 4 times a year, this is an impossible expense for most patients and their families. The funds raised by Chai for Cancer USA will ensure patients receive the right treatment at the right time.

We are delighted and grateful to have volunteers hosting chai addas (tea parties) around the country, in California, Arizona, Missouri, Washington DC, North Carolina, Washington, New Jersey, British Columbia, and Ontario to raise awareness about the needs of cancer patients while raising funds for their support. Our sponsor Choice Organic Teas is providing the delicious tea, and our adda hosts are opening their homes and hearts, sharing our mission with their community.

Whether you are near or far, you can support the cause! Raise a cup of chai at home and donate online to support Chai for Cancer USA, or if you are in the Seattle area, join us for The Max Foundation’s Adda on August 12th!

The Climb – Tony Leo’s Story

Passion is something that grips you, changes you and make you scale great heights where few will ever reach.

Listen to Tony’s song, “You”, about his experience with cancer and how Max inspired him to keep going!

It was in 2007, Tony Leo experienced a life-changing event during his Mount Kinabalu climb. It was the start to the climb of his life.

Nine years have passed since then. I was sitting with him recently at the launching of Kinabalu Calls Documentary, in which he is one of the casts. He is not only a friend from Max Family, but also an aspiring singer-songwriter.

In the next 1.5 hour, we talked about his recollection of the climb and how far he has come now. We also talked about how “people with passion can change the world,” as quoted by Steve Jobs.

Waheeda: How do you describe yourself to someone who has never met you?

Tony: If someone were to meet me for the first time, they always think I’m a goofy dude who has no care in the world. I am always laughing, smiling, talking with people and sometimes full of myself. Haha!

Waheeda: So tell us a little bit about the climb in 2007.

Tony: I realized there’s something wrong with my body, I am an active person playing football and going to the gym. But I was panting excessively during the climb, I felt I couldn’t do the climb. It took me 13 hours to reach Laban Rata (the midpoint of the mount) when normally it is around 6 hours. It was so dark and cold, I broke into tears once I reached there knowing there’s something wrong with my body.

On the second half of the climb, I failed the climb at the stony part. I looked down and I got a fear of heights.

Indeed, he was right about his body conditions.

Tony: After coming back to Kuala Lumpur, I decided to see a specialist for a check-up, and I was referred to the haematology ward. When Dr Haris diagnosed me with CML, I reached the Laban Rata point all over again, and the fear of death knocking on my door.

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Waheeda: What were your feelings at that time? Were you fearful?

Tony: I wasn’t fearful because God has prepared me throughout the years, unlike the climb. I did not prepare myself with the fear of height.

Until today, I am not scared or crumbled because of CML diagnosis. Because to me, it was a miracle moment. It’s amazing.

After 9 years of that episode, Tony has decided to climb Mount Kinabalu again, for the Kinabalu Calls Documentary.

Waheeda: How different was your recent Kinabalu climb compared to the previous one?

Tony: I was so frozen in fear during the 2007 climb, it was so paralyzing. I didn’t have the courage to climb up the mountain with the others at that time. I’d rather walked down to the jungle alone at 2 am in the morning. Interesting, right?

But the recent climb is much different. I kept climbing and climbing, the fear was not there. This time, I am much more prepared mentally to face my fear. Similarly how God has prepared me for my CML journey. I feel I am much stronger physically as well this time. It was raining most of the time, 5 hours out of 8 hours. Luckily, I did not have fever or anything.

WaheedaI heard you have performed quite a number of times in the previous patient gatherings. What do songs mean to you?

Tony: Songs have always been a way to tell a story. It can evoke memories like sadness, love, missing someone, being happy and remembering a snippet of your previous life. That’s what song is all about.”

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Tony also shared how his passion in singing began:

Tony: I always loved singing. When I was a kid, I was singing in the shower. One day, my dad asked me to join the singing competition in a family day. I didn’t want to do it at first and at that time, I only sing Malay songs you know. Then I learned one of my good friends, Muhammad who also happened to be my competitor in primary school was one of the participants. “Muhammad is in it, I have to join the singing competition, haha.” I ended up winning the competition, an Indian boy singing the Malay song. Ever since that, I realized I have a gift to sing.

WaheedaFor you, passion is…

Tony: Passion is something that grips you, changes you and make you scale great heights where few will ever reach!

Waheeda: Who are your inspirations? How does passion transform you?

Tony: To be really honest, each one in the Max and Max Family are my inspirations. Normally, I meet older uncles and aunties at the patient gathering. You can see their pale faces and frail bodies, but the genuine smiles are always there. If they can do it, I also can do it. That’s why meeting other patients is very important. I am glad to meet other patients in Max Family. We’re human, we need that encouragement.

Waheeda: Do you have any tips for others affected by cancer who are hesitant to pursue their dreams/passions?

Tony: Of course it’s very crushing to know you have a cancer, that it is a huge truth to take in. But that’s always a moment. You need to know you are strong enough to go through the moment. Once you have passed the moment or mind-set, it is what you do next. This is a chance to be better, stronger than before. Here’s your chance to bless people around you. So you become an inspiration to others.

It all started with the positive attitude. It cannot come from your parents, your friends but from the deep inside your heart. That’s why I think faith helps to nourish that. Once you have the positive attitude, everything else becomes easy to fulfill your passion.

Throughout that 1.5 hour, his positive attitude does not go unnoticed. Brimming with smiles and positivity, personally I feel Tony has been going through a transformation.

Tony: CML transformed me A LOT as a person. It makes me kinder, I empathise more. I used to hate going to the hospital because of its smell, the coldness and environment. But now, I’m going to the hospital without hate. Nowadays when I go, I feel my life is moving even though I am stuck at the hospital.

I also become more grateful. I learnt how some of my family members who I never knew loved me so much. My uncle cried when he found out about my diagnosis, one aunty keeps making me a dish called “Cockles Sambal”. Family became more important you know, because the priority has been changed.

The documentary also features “You”, a song written by Tony dedicated for Pat and Max. He describes Pat and Max as superheroes!

We also had an opportunity to watch Tony performed “You” live during the launching event. He gives an emotional performance that day, there are so much truths in every words he sings.

Tony: You is a song about someone who has gone ahead of you, has gone the same battles that you haven’t yet to go through. But because of that person’s experience and help, your journey is now much easier.

As we parted our ways, I am sure his passion in great life undoubtedly changes him, and could transform more people out there. 

“You” is now on iTunes!

I am a Spartan – Thilip’s Story

Being a patient or I better call myself and others as a Spartan, someone who is fighting for something each and every day.”

–Thilip Kumar Ragavan

We first met Thilip Kumar Ragavan in May 2014. He was a young chronic myeloid leukemia Spartan in the patient workshop at Hospital Ampang and was newly diagnosed with CML at that time, but the smile never left his face. Bright, vibrant, energetic, and positive – that’s Thilip.

It has been only two years, but we have seen Thilip grow to become an influential cancer advocate. He educates his friends and community about cancer. I talked with Thilip to understand how learning and experiences can transform us for the better.

Waheeda: Do you still remember your feelings the first time you have attended Max Family event? What was your idea of cancer support at that time?

Thilip: Yes I still remember the first time in 2014, it was at Hospital Ampang. At that time I did not know anything about cancer support. I felt lonely because I have never met anyone in the same situation as me. What would future hold for me?

Waheeda: So after 2 years, tell me how The Max Foundation and Max Family inspire your positive life growth.

Thilip: Max has helped me by providing mental support and keeps me motivated. When I meet the older survivors that are positive and being compliant on the treatment, they really do inspire me. I want somehow to be like them!

You know what, I even find our interaction in the social media platforms where stories are being shared (Facebook, WhatsApp Group) motivate me. Sometimes when other survivors share about their side effects from the medicine, it makes me aware of what might happen when I take that particular medicine.

Waheeda: I can see you involve actively in raising awareness about cancer. I want to call you “An advocate in your own league.” Can you tell a little bit about this?

Thilip: Being a patient, or, as I like to say, a Spartan (someone who is fighting something each and every day), I am usually open about my disease. I tell and advocate people on the sign and symptoms that I had, using whatever platforms made available for me (in my social circle and social media platforms).

Loss of weight was a major turn for cancer and I always tell people that we have great advancement in treatment and we have a great medical team in Malaysia. I try to empower those around me with stories and facts, to debunk the myths out there about cancer.

Waheeda: What keeps you going, even stronger?

Thilip: My mom, my younger sister, and my friends and family.

For my mom and sister, they need someone as a guardian of their life and this make me stronger. Every moment is an opportunity to build strength, I believe mental controls everything.

Waheeda: What’s one piece of advice that you heard during your diagnosis that you still hold onto today, perhaps forever?

Thilip: Don’t ever give up – you are a fighter.

Waheeda: Last but not least, could you please complete these sentences:

Thilip: Leaping forward is my thing.

I can make a difference by advocating people about cancer.


If there is a lesson to learn from Thilip, we should try our best to utilize every opportunity that knocks on our doors. Every moment is an opportunity for transformation.

Let’s Come Together, Shall We?

This year, the Malaysia team set a goal of creating deeper connections in our local patient initiatives. We wanted to see our patient community connect with each other. We changed the format of our patient workshops from seminars into intimate, casual gatherings. “Let’s Sama-Sama” (Let’s Come Together) is a space for patients to build stronger relationships with each other and to encourage more sharing and learning alongside disease education.

I forgot to tell you an important fact! In our culture, Sama-Sama is a notion of togetherness: “We’re in this together, you got my back.”

Last Sunday, we organised our very first “Let’s Sama-Sama” gathering in a nearby park. The sun was shining brightly (personally, I prefer sweat rolling down my cheeks!) and around 60 people turned up, 40 of them were patients and caregivers. For this event, we prioritise newly-diagnosed patients (those diagnosed within the last 18 months.)

With the goal of a more casual and intimate gathering, we started the day with a brisk walk – all the patients, volunteers, and even our doctors walked together early in the morning. People were already talking, making jokes, and even taking selfies! The day continued with us splitting into groups, each led by a facilitator (Max Family Core Member) and doctor, and all joined in discussion.

I was surprised to see how much honesty can be revealed once you have established connection with each other. A new patient shared his struggles when he was first diagnosed about 4 months ago.

“I did not tell my wife and my mother about the diagnosis, I did not want to make them worried. I also need to adapt to my new lifestyle. I do not go to the gym now as frequent as before, I was advised to have a lot of rest.”

As I was listening to his story, I could see he did not stop smiling. His story did not emanate negative vibes at all, he was so optimistic and open. His story encouraged other participants to share their experiences. Somehow it empowered all of our struggles – the patients realized they were not alone. This allowed for each of them to share their own battles with the group.

“Let’s Sama-Sama” created a safe and conducive environment for our community to open up. What’s more powerful than learning about our patients through hearing their stories?

Ironically, I haven’t seen the patients laugh so much before. It was wonderful to capture their joy. They were so courageous, not only to coming to terms with their diagnosis, but taking a step forward: To be inspired and inspiring others.

 

What Happens If We Knock on the Door?

Who would have ever thought there would ever be a Max Family Society Malaysia, a Max Global Network patient support group, 10 years ago? It took a courageous first step to be where we are today.

When I first got involved in patient support and advocacy work with The Max Foundation 11 years ago, I remember vividly the most common questions: “Am I the only one diagnosed with this disease in the country? Is there another person who is having similar condition like me?” These questions made me dream for a space where Malaysian patients and caregivers could meet each other and share their experiences.

The dream slowly became a reality when I got to know two individuals, Dr Razak and Sahimi, who are living with chronic myeloid leukemia (CML.) It was at the hematology clinic at the national reference hospital where we started our first informal meeting. We made an important decision that day: to form a patient support group!

That was 10 years ago. Since then, I have witnessed the amazing growth of our patients and our physician team. Over these 10 years, with the support and guidance from The Max Foundation, this joint collaboration has had tremendous achievements:

  • 140 patient workshops and get-togethers
  • Eight patient congress and camps
  • 28 pediatric patients storytelling events
  • Numerous health awareness exhibitions
  • Support for 24 children of cancer patients to continue schooling
In the last decade, we have reached over 10,000 patients and caregivers in Malaysia.

One of the most significant things in my journey with The Max Foundation has been the opportunity to work with so many amazing individuals – each one of them teaches me the meaning of life, shows me the courage, and prove that nothing is impossible.

It was a brave moment in taking the first step to call for those initial informal meeting, which marked the formation Max Family. I strongly believe that through The Max Foundation and Max Family, we are able to do more for our cancer community. Cancer touches everyone, but it does not only bring negative experiences. You and I have the power to turn the challenges into opportunities and change a life.

I am looking forward for another 10 years of Max Family!

10 Years and Counting

Our lives are made up of a series of moments and encounters. But do you know what we remember the most? People. We remember how they make us feel and vice versa.

Now, I would like to bring all of you into the Ampang Hospital auditorium, where we recently celebrated 10 year anniversary of Max Family – a Max Global Network patient group in Malaysia. It was a sunny Saturday on 23 April 2016.

I think I can make it now, the pain is gone
All of the bad feelings have disappeared
Here is the rainbow I’ve been praying’ for
It’s gonna be a bright (bright), bright (bright)
Sun-Shiny day.

The celebration was started when Mike played “I Can See Clearly Now” by Johnny Nash. Mike is one of the caregivers who has been with Max Family for a long time. I have never heard the song before but I think he played the best song for that day.

A special day is filled with big moments, they say. Personally, I believe it’s a special day when it makes me pause and reflect. Definitely the celebration day was one of special days. So in this post, I would love to share how the day has imprinted feelings into my being.

Loss Could Empower Us

Mei Ching was the first person to give opening speech that day. There was something different in her speech, it was fulfilling in different way.

She talked about the loss of two Max Family members who were very supportive during their lifetime. They never missed attending the patient workshops, with their ever-ready smiles. Not just that, they were the persons who tried their best to extend helping hands. One of them would always volunteer to help The Max Foundation’s Malaysia team conducting the Maximo and Big C sessions. She even sponsored a cake in one of the sessions; you can tell how sweet she was.

When Mei Ching shared the story of loss, there were two things came into my mind. First, we are always be remembered by how we lived our lives. And loss could empower us, ones who are still living. How we want to be remembered? That itself is a very powerful question to guide us. This leads to the next realization:

Life is Short

In the positive sense, the short life makes us live courageously and passionately. We try to knock the doors, rather than just standing outside the doors.

So we need to start doing things that we should do NOW.

We’re All Connected

One of my favorite moments that day was when I invited four cancer survivors to share their journey. It was not the usual sharing, but I got to see their layers of love.

When I asked them question of “What inspires you to give to others, specifically the people that have been touched by cancer?” To be honest, I was so curious to know the answer. Almost every one of them recalled their first encounter with the fellow survivors many years ago, and told us how it changed their lives for better.

I saw inspiration when I met him for the first time. That’s the day I decided I want to be a source of inspiration for others.”

The very answer touched me in different levels. I realize that kindness goes a long way and it does not stop there. One act of kindness creates endless ripple.

It got me thinking how it all started 10 years ago? There must be a beginning to stream of kindness that I witnessed that day.

Pop Quiz! How Well Do You Know Our New Site?

Our new site went live a few weeks back and we celebrated with a great launch party at Max HQ – we had balloons, cake, confetti, and games! For one game, we did a virtual scavenger hunt through our website with two teams hunting down the answers to the questions below. Try your hand at it and see how you do!

  1. The Max Foundation offers support and education opportunities in three ways. What are they?
  2. Who offers their expert perspective on WHY we do our work?
  3. In Asia Pacific, workshops are available in what three countries?
  4. How many treatment access solutions are there in Sierre Leone? (hint: check the map!)
  5. When making a donation, which three men are featured?
  6. Who is the premier Chai for Cancer USA sponsor?
  7. Who is the seventh board member on the Strategic Innovation Advisory Board?

How’d you do? Post your time and share with your friends!

Answers (highlight to view them):
  1. From our “What” page: Support Programs, Patient Workshops, and Capacity-Building Conferences
  2. Dr. Gilberto Lopes
  3. Malaysia, Indonesia, and Thailand
  4. Four
  5. Moshaddek, Ferdinand, and Cristian
  6. Choice Organic Teas
  7. Jerald Radich, MD

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