Rising Sun

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.

Rising Sun, Part 2: Not Just Another Love Story

Waheeda and friends at Rising Sun.

Waheeda and friends at Rising Sun.

The beauty and thoughtfulness of the dinner was a true expression of love.

The beauty and thoughtfulness of the dinner was a true expression of love.

MaxSmiles team members generously serve us a delicious Thai dinner.

MaxSmiles team members generously serve us a delicious Thai dinner.

Our guest blogger is Waheeda Hasbullah is a Project Executive with the Malaysia team in Kuala Lumpur and recently attended the Rising Sun conference in Bangkok. She has an educational background in biotechnology.

People, by nature, are not perfect and sometimes we forget how to love each other well. The dinner at the Rising Sun 2015 meeting prepared by MaxSmiles Thailand, was a reminder to me. Admittedly, I attended the dinner with the intention of eating as much Thai food as I could. Wirat, Thailand Senior MaxStation, reassured me that I would not be disappointed that night. He was totally right; who would’ve thought the dinner would feed my soul.

As soon as we have arrived, the MaxSmiles team members warmly welcomed us. The dinner venue was stunning: it reminded me of a Malaysian wedding receptions. From the choice of flowers to hall arrangements, the love manifested throughout the space. No detail was left unnoticed; they reflected just how much effort was put in for this dinner and showed how much the members cared. I would describe the dinner as a beautiful union between MaxSmiles and the Rising Sun participants, even though we were practically strangers.

Funnily enough, I only tried one or two Thai cuisines that night. Do you remember how at first I wanted to try as much Thai food as I could? There was nothing wrong with the food at all. In fact, they were all cooked perfectly. I was simply filled with so much love. You may think it sounds a bit silly but the truth is that love was in the air.

I ended up going to the food section and met with the patients. We exchanged very few words, due to the language barrier. Most of the time we were just smiling to each other yet I feel somehow we understood each other. That was when a few of Muslim patients approached me – they could tell I am a Muslim from my hijab (headscarf). We spoke different languages and were raised up in different cultures, yet we are bonded by the same faith. It doesn’t have to be faith or religion, there will always be something that brings us all together. We were connected by the strong bond of love that night, and my writing will never be enough to justify the love we received.

Our generous hosts threw so many great surprises but my favorite one was the surprise for Pat. They were all gathered in the hall to be able to see Pat in person for the first time. I could see how excited they were from my seat at the back of the hall – they couldn’t help but to smile in admiration. They presented an amazing tea set for Pat and the Novartis. I was touched by how someone could love so deeply and generously. The moment made me tear up, and I was humbly reminded about the most important lesson, to love genuinely.

I never thought I would get a sweet little surprise until a small group of lovely Muslim patients approached me for a picture. They were trying their best to tell me that they’re Muslims too. We spoke to each other with very minimal words and managed to capture the moment with a photo. They kept holding my hands and looked me deep into the eyes. I saw affection, and I was truly humbled. They did not know anything about me at all, yet they made me feel so loved. Luckily, Piyapong managed to join us at the end of the conversation, helping us with the translation. I made sure to tell them how happy I am to be there.

That night we literally tasted love, I couldn’t agree more on what Pat has said in her speech: that night, love is being spoken without words.

Rising Sun 2015 Expands the Capacity of Patient Advocates Throughout Asia Pacific

More than 45 patient advocates came together for the 2015 Rising Sun meeting in Bangkok, Thailand on October 9-11. Rising Sun, the Asia Pacific regional event, is an initiative driven by The Max Foundation in partnership with local patient groups that aims to enhance the capacity of patient-advocate leaders, increase the well-being of patient communities, and raise disease awareness through learning and sharing opportunities.

Starting this year, we expanded the conference to include chronic lymphocytic leukemia (CLL) along with our focus on chronic myeloid leukemia (CML). Most of the patient groups in Rising Sun network serve as the only blood cancer support groups in their local country. The addition of CLL education through Rising Sun will allow patient advocates to support this specific sub-group throughout Asia Pacific.

Hematologists from different countries educated us on different topics such as international perspectives, regional best practices, local management, and drug approval and monitoring.

There was rich discussion in each session as patient advocates raised questions and concerns about accomplishing their goals. Our patient-centered speakers were excellent in providing a clinical view grounded in the patient’s reality. Patient advocates spoke from the patient community perspective, and everyone shaped the discussion towards ways to work together across all stakeholders – from physicians to patients to industries and policy makers.

Rising Sun is not only about disease education. Our second day focused on fundraising strategies and tactics for patient groups. Participants gained skills in online fundraising and social crowd-funding with plenty of time devoted to productive brainstorming.

This year’s meeting was the best one yet based on a few highlights:

  • The quality of discussion raised;
  • The maturity of patient advocates;
  • The move from self-centered towards community-centered;
  • The dedication and efforts of our speakers; and
  • The participation of participants – from interpersonal discussions to group involvement.

Rising Sun is more than just a meeting, it holds us tight as a region. Beyond a learning and sharing platform, it is also a touching reunion for patient advocates that see each other as family.

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Join Gershon as he shares his journey from cancer patient to advocate and leader.
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