Vulnerability

“Don’t cry baby, you’re a strong kid,” what I normally hear when parents try to console their children here. As I’m growing older (there you go my honest confession), I come to learn it’s okay to cry, to be sad and to be vulnerable at the certain time.

These past two weeks also in a way regained my perspective about vulnerability.

Each month, I call all 18 families of Max Schooling Project, an initiative of The Max Foundation to support children whose families are affected by a cancer diagnosis. January marked my first “anniversary” of our relationship. If I can describe our relationship in marriage term, it’s still in “honeymoon” phase.

I am beyond grateful to learn so much about people and real challenges. Challenges such as: families with only RM 900 (around $200) to spend monthly with 5 children; families living with grandparents because they could not afford housing; or eldest children needing to drop out school to support their families…I heard them all. It hit me when I recently spoke with a mother and she burst into tears while telling me her struggles. I was unsure on how to best console her, so I chose to keep silent for a moment. I let her being vulnerable. I should not stop her from crying, that’s one thing I was sure about.

That’s when I found myself reflecting about vulnerability. In a way, vulnerability is an impact. After hours of phone calls throughout the year, families have opened themselves up to me. The vulnerability is not just a spur of the moment but hopefully built on mutual trust and respect. I gain a new perspective about vulnerability – it draws out your strength when you respond to it with care.

When someone is vulnerable to us, it comes with a sense of responsibility. At The Max Foundation, we value that our patients open up themselves, telling things they are fearful of or things that may be viewed as “weaknesses”. It’s not just about how much money they earn per month, but about their life. It goes beyond facts, you know. We’re dealing with real people with very real feelings. When someone is vulnerable, I have focused less on trying to say the right thing, and more on attentively listening to them first and lifting them up in the midst of their grief.

I can’t wait to unfold their beautiful stories through my next monthly phone calls. We learn best when we are willing to listen. The most important thing is being vulnerable is not being weak. That’s what I have learned through this initiative. I am grateful to be able to learn about the precious lessons from my day-to-day job.

A Chance Encounter

I am Shalini, working for The Max Foundation from my home office at Madurai, India. Through my work, I come across a lot of incidents that make me feel satisfied and fulfilled in our work. Allow me to share one such incident.

It was windy evening and I was with a friend going to a nearby vegetable market on a local bus. My friend asked, “What kind of service do you do at The Max Foundation?” So I started sharing in a very loud voice as I rarely get a chance to express my happiness for the work we do!

Suddenly, I noticed a man sitting just opposite to me staring at me. I thought he was annoyed at my loud voice. so I reduced my volume and kept on talking with my friend. While explaining, my eyes went towards the man. Again I noticed he was keenly listening to our conversation.

Finally the stop came! I got down with my friend and took 10 steps.

I heard a voice behind me calling “Madam, madam!” When I turned back I saw the same man calling me. My mind started thinking many things like “Did I miss my purse or mobile on the bus?” He moved towards me. I addressed him, ‘Anna’ means Brother in Tamil. He said “Dear madam! I just got down to thank you for the service you do. I was listening to the conversation and I know The Max Foundation very well. My friend gets medicine with your help.”

He shared his own story of The Max Foundation’s work:

It was 8 years ago, when this stranger was working with Tamilnadu Electricity Board and befriended a work colleague in Madurai.

One day his friend came with a sad news that he had chronic myeloid leukemia.

His friend lost all hope and was very depressed. But after consulting with a physician at Adayar Cancer Center, Chennai, and with the help of The Max Foundation, he was able to access his life-saving treatment. Now, this patient is still in our program and works with his physician to adhere to his medication. It was great to hear that the patient is doing well and is regular in his checkups.

I must say, after the conversation with this stranger, I had goosebumps. I was feeling very proud to be a member of the Max team!

I must mention my special gratitude towards the patient’s friend for getting down from the bus just to thanks us. His story made my day – a day to remember and cherish all my life.

The Brave Fisherwoman: In Remembrance of Hira Goma

I share this story to talk about a dear patient and friend, Hira Goma, whose determination and inner strength in the face of her cancer diagnosis have been an inspiration to me for the many years I have known her. Just recently and out of nowhere, we lost Hira after the sudden onset of a malignancy unrelated to her cancer, which took her away from us in just two weeks.

I pray that Hira’s family will find the strength to cope with her passing and that all who knew and loved her will also find whatever we need to help us come to terms with her passing. I also hope that in telling her story, I can in some small way celebrate and honor her life and her strength and that she can continue to inspire others.

Hira Goma was a deceptively diminutive Koli fisherwomen from the seaside village of Pachubandar, which lies to the far North West of Mumbai and has been home to generations of Kolis who are the city’s traditional fishing community. Like many other women in her village, Hira’s day began at the break of dawn. Morning chores included cooking for her large extended family, after which she took off to the wharf to get her fish for a day of selling in the bazaar. She was outspoken and cheerful and freely interacted with everyone.

Alongside her husband and other menfolk in the family, she was equally responsible for providing the economic stability her family needed and therefore commanded great respect. Hira returned home only after the heavy load on her head was sold, a task that could take all morning and afternoon to accomplish. 

Times were very tough for Hira and her family during that time. The reckless urban growth that spread well beyond the city limits had begun to ruin the sea and the coastline which was their only source of livelihood, as the fishing expeditions returned with fewer and fewer baskets of increasingly smaller fish. The Kolis were facing a severe crisis already when cancer reared its ugly head in their midst. And it threatened to take away Hira, the mainstay of the family.

The family was devastated. Though Hira was childless, she was a mother to all her nephews and nieces. Her mother was distraught when Hira received her diagnosis, crying out that it was she, the elder woman with a long life behind her that should be taken away by cancer. Beyond the immediate family, the whole community was in shock.

Her husband adored her and was determined to do all that was needed to save her. After all, he said, “we battle the forces of nature when we go out to the sea. We are hardy people and we are ready to die earning our livelihood. What is cancer in the face of the dangers we face every day?”

Harnessing whatever resources they could garner, no stone was left unturned in seeking medical advice in the little fishing village. With time and great effort, they managed to get the diagnosis confirmed and found their way to Tata Memorial Hospital. Once there, it was just another step to the referral to The Max Foundation and access to the treatment that would keep Hira alive and well for over 10 years – Glivec.

In all these years, through all of the struggle and emotional upheaval of her diagnosis, Hira remained her active and busy self. She never missed her daily routine of the wharf and the bazaar, nor did she let her work and routine come in the way of her managing her CML.

Hira never missed a dose, nor neglected to attend her follow up visits, measuring the distance between the city and her fishing village not in kilometers, but in the benefits she received from her treatment. She knew the daily medication kept her alive and active, but would say with a shy smile that lights up her face that even more important than the medicine was the love of her husband. He stood by her throughout the years and never let her feel that her cancer has diminished her in any way, affected her ability to work and live her life as normally as before.

She said that to find The Max Foundation and her dear Amma was like meeting another family – “All the fear and worries disappeared when I met The Max Foundation. Over the years this bond has only grown stronger and deeper”. She was a dear friend and we cherished her, for her personal strength in the face of cancer, for her determination to live life as fully as before her diagnosis, and for her generous and warm spirit.

Hira Goma stood tall and proud and wore her cancer like a medal. I will miss her dearly. Death can never take away life. And it is that life we must celebrate. Even in death. Especially in death.

In honor of Hira, we have published her story as an illustrated patient journey. View and share Hira’s story.

Take the Chai Five challenge to support cancer survivors in India!

Chai for Cancer USA is back for a third year, and we’re building on the success of last year’s campaign, which established a program in India in partnership with Friends of Max, our local patient support arm, to help patients with one of their greatest needs – diagnostic testing. This was all made possible thanks to our generous supporters and our campaign sponsor, Choice Organic Teas!

This year, we have the opportunity to help more patients in need by raising additional funding for this program, and we need your help ensure people in India who are facing cancer get the lifesaving care they require!

How can you help? Take the Chai Five challenge to raise awareness of the needs of cancer survivors while raising funds for their support! What is “Chai Five”? The Chai Five is a list of five simple actions you can take to support people in India who are facing a cancer diagnosis.

How to take the Chai Five challenge:

  • Step 1: Make a donation today to support cancer survivors in India
  • Step 2: Post a #chaifie (selfie with your cup of chai) on social media
  • Step 3: Share a cup of chai with a friend, and ask them to support Chai for Cancer USA (then of course, take another #chaifie)
  • Step 4: Ask your employer to match your donation – this could double or triple the impact of your gift!
  • Step 5: On May 14th, Chai for Cancer Day, share a post on social media (or email your friends) about why you support Chai for Cancer USA, and challenge them to complete the Chai Five with you

When you take the first action of the Chai Five challenge with a gift to support Chai for Cancer USA, you are giving a cancer patient access to the diagnostic test that monitors their disease, and also helping them gain access to the free, lifesaving treatment they receive through The Max Foundation.

Join us in raising a cup of chai to help those facing cancer in India – donate today to take the first action of the Chai Five challenge!

The Max Foundation turns 20!

Friends around the world, have you heard what 2017 is? It is The Max Foundation’s 20th Anniversary as an organization! That’s 7,300 days; 175,200 hours; 10,512,000 minutes. We are amazed, proud and grateful as we mark this milestone together with our global community.

Our anniversary is not just marking the one day we formed our mission. It is about each day that we work with you, our partners, towards social change so that no one experiences stigma when diagnosed with cancer and we all experience health equity. We cannot rest until people everywhere are able to access the cancer treatment, care and support they need – no matter where they live.

When we named our values recently as an organization, we arrived at Excellence, Dedication, Innovation and Collaboration. As a team, we aim to live these values every day.

Through the years, we have developed a personality as an organization. We are passionate, committed, determined, resourceful, creative, and always striving to improve ourselves. We are a global organization with a global perspective because we are serving the world.

The Max Foundation would not be here without all of you: our supporters, donors, sponsors, partners, team members, advocates and, most importantly our patient friends who inspire our mission.

In 2017, we plan to honor our anniversary with you in many different ways; a climb to the top of a mountain in Malaysia, blue ribbons sent to friends around the world, and a celebration in Seattle on Max’s Day, October 19th.

We sincerely thank you for getting us to 20. Now, let’s keep changing the world so all people face cancer with dignity and hope!

Past Due

The anniversary of someone’s death is always difficult. Just as we recently remembered Max’s passing, we also hold the others who have passed too soon. Below, Beena shares a remembrance of our dear Jaya, who was a committed team member and played that role of a patient advocate amazingly well until she so sadly lost her battle with cancer on 23rd Feb 2016. We at The Max Foundation remember her as one of the bravest contributors to our community and as an exemplar of the spirit of Max.

I was cleaning up folders on my laptop when I chanced upon the following word document. Being the first death anniversary of our beloved Jaya, I thought it is only right that I post this today, as a tribute to a wonderful colleague, a true warrior who clung on to her life, never gave up till the last moment despite her illness.


Recently, I discovered a whole new meaning to the phrase “past due”.

Mr.Kunjappan was on my past due list, and I made the usual follow up call to enquire why he had not been reapproved yet.

He informed me that he is really poor and cannot afford the cost of tests advised, and that he finds even the Rs.150/- (less than $3) fee for the doctor’s appointment unaffordable.

I advised him to go meet his physician with his entire story. Doctor would surely help.

A week passed, and he had not yet been reapproved. When I called again, Kunjappan was hesitant to approach the physician as his OPD was too crowded. I persisted, and he met his physician.

I happened to meet the physician soon after, and brought up the topic of Kunjappan. It came as a surprise to me that the patient had not mentioned any of his financial problems to the doctor.

So, I called Kunjappan and asked him why he had not told the doctor of his difficulties?

Kunjappan burst out crying over the phone. Amidst sobs, he told me of the days when he had been abandoned by others and had gone to the physician in despair. The kind doctor had put him on the programme and also helped him financially.

Kunjappan said he could not go back again and again to exploit the kindness of his God-like physician. So he had sold his only means of transport, his beloved bicycle, to raise the money. He would go back to the hospital, complete the tests, and get his re-approval soon.

I was touched beyond measure.

I now understood the extent of obligation that the patient felt towards his physician. His “past dues” to the doctor prevented him from asking any more favours of the doctor!

Kunjappan was seen taking the lead in the first ever GIST meeting that was held in Kochi.

Let us all create “past dues” in others’ minds, without us reminding them ever, of course. Max would be smiling on us from above. Isn’t this his mission for us?

Kunjappan got another bicycle after all. When my husband heard of Kunjappan’s plight, he was moved to tears too, and told me to gift him our old bicycle which was lying unused.

Announcing the Max Global Experience – Mt. Kinabalu!

Join us this summer in Malaysia! In July 2017, a team of partners, cancer survivors, and friends like you will join us from the USA, Malaysia, and beyond to embark on an adventure with a common goal: raising funds to carry out our work supporting cancer patients in Malaysia. Along the way, we’ll meet with patients, learn about The Max Foundation’s work in the Asia Pacific region, and climb Mt. Kinabalu.

Will you join us? Learn more about this exciting and meaningful adventure.

This Max Global Experience was inspired by our friend Tony Leo’s cancer journey. Tony first realized that something was wrong with his health 10 years ago as he attempted to climb Mt. Kinabalu, but was forced to turn back before reaching the summit.

Today, we’re glad to see Tony living well with cancer thanks to the treatment and support he receives through The Max Foundation. In 2017, we look forward to conquering Mt. Kinabalu by his side! Do you want to climb with us? Whether you’re an adventure-seeking mountaineer or prefer to stay closer to sea level, you can join us this summer, and give dignity and hope to people in Malaysia facing cancer by raising funds for their support. We look forward to bringing new and old friends closer to our work through this once in a lifetime experience – contact us today for more information on how to join us this July!

World Cancer Day – Empowering Low- and Middle-Income Countries

On 4 February 2017, World Cancer Day returns under the tagline “We can. I can.” World Cancer Day 2016-2018 explores how everyone – as a collective or as individuals – can do their part to reduce the global burden of cancer.

The cancer burden is felt especially hard in low- and middle-income countries that are unable to offer proper treatment and care. There is still the disparity in the cancer survival. For instance, 66% of people in low- and middle-income countries will not survive their cancer, compared to only 47% in high-income countries.

When cancer struck someone, they normally find themselves devastated and afraid. Surviving cancer in countries that lack the support and care, the word empowerment is not in patients’ dictionaries. But if we could increase the access to treatment and care in these countries, can we turn the tables?

Here at The Max Foundation, we believe access to treatment is access to life. Every day, we work together with our partners to support people living with cancer in countries where cancer still carries stigma and discrimination. But we want to go beyond the cancer treatment, we want to help people thriving with cancer.

I recently learned about Rosario, a cancer patient, and advocate in Mexico. After being diagnosed with Chronic Myeloid Leukemia (CML), she is journeying through cancer with the support from The Max Foundation. Access to life-saving treatment was made possible by our multi-sectoral partnerships with pharmaceutical industry partners, governments, and the health care team.

We have learned through our work that facing cancer is more than treatment alone. We believe uplifting patients is important to ensure patients living well with cancer. Rosario has proven that a cancer patient can step up to becoming an agent of change when given necessary support. Today, she is leading her patient organization named Manitas, which helps children in Mexico face cancer.

“I proudly give others the love and care I have received through The Max Foundation!” 

The world needs more people like Rosario. The word empowerment can be in cancer patients’ dictionaries. Since our founding, collaboration is at the heart of our work. Building a future where every patient can access the best treatment and support requires a comprehensive approach. “We Can. I Can” is not two separate entities. They come together as one.

World Cancer Day brought us an important opportunity to convey our message of inclusiveness. No matter high-income or low- and middle-income countries, facing cancer remains difficult. In order to increase global access to treatment, care, and support for people living with cancer, all of us must work globally.

Announcing the 2016 Excellence in Patient Advocacy Award!

Each year, The Max Foundation selects a colleague to receive our Excellence in Patient Advocacy Award, honoring a member of our global team who has done something especially remarkable that year. On December 17th, we were delighted to present this year’s Excellence in Patient Advocacy Award to Viji Venkatesh, Region Head for South Asia, for her tireless dedication to the patients she serves.

In this work, we are diligently preparing for the possibility of unexpected changes that force us to do something extraordinary for our patients.. This year, Viji found herself in just this situation, when a new government-imposed import tax threatened patients’ access to life-saving cancer treatment.

For months, Viji has tirelessly advocated with government officials on behalf of the 18,000 patients she serves in India. These patients remain at the forefront of her mind as she works to preserve access to their life-saving medicine. Viji is an example to us all in her relentless and courageous efforts on behalf of her patients. We were pleased to recognize her efforts and dedication with this award, and are grateful to have her fierce devotion to her patients as an inspiration for every member of our global team.

Researching CML Patients in India

A new study in Clinical Epidemiology and Global Health features the Glivec®Patient Assistance Program (GIPAP) and reveals that “chronic myelocytic leukemia (CML) is diagnosed at an earlier age in poorer populations than in more affluent populations.” The study focused on India’s CML population to investigate other possible contributors to early age at onset. The team of authors include our very own South Asia Region Head Viji Venkatesh, and Max CEO Pat Garcia-Gonzalez, as well as Paul H. Levine, Kunal Ajmera, Brenna O’Neill, Heather J. Hoffman.

The study is only available to the public for a limited time so if you know a physician or researcher that would benefit from this study, share it today!

Read the Article

Go on the Patient Journey

Join Tony as he shares his story of learning about his cancer, gaining access to life-saving medication, and connecting with a community of care.
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Tony