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.

The Maximize Life Campaign: A Variety of Events but a Shared Message in Latin America

blogpost407_1In Latin America, the Maximize Life Campaign has become something like a tradition – a time when each patient organization creates an event or activity of their choice and powers it up for a campaign that takes on a life of its own!

13 patient groups from 11 Latin American countries joined this year’s movement, bringing together patients and caregivers with the purpose of telling the community that cancer is an issue, that ignoring it is not going to make it go away, and that the best approach is to learn about it in order to know what to do about it. From governments to the general public, everybody can get involved in figuring out how to treat cancer patients as members of society and not as a burden.

The 13 Maximize Life Campaign events happening throughout Latin America are varied, and they go from meetings that aim to raise awareness in patients and their family members, such as those taking place in Argentina, Nicaragua and Honduras, to larger scale, community involving events, like those happening in Peru and Ecuador. Patients in Chile, Peru and Mexico have perfected a stage play for children with the story of Maximo and the Big C, Ecuador will organize their customary walk through the city with all types of cancer patients and, in Colombia, children going through treatment will be treated to an afternoon of fun and games, and the message that they are not alone.

Other events include promoting the campaign in non-central cities where access to information and support is rare (Guatemala), Maximo storytelling (Costa Rica), visits to the zoo (Dominican Republic), and others.

But all these events have something in common: plenty of helpful information – both scientific and practical, volunteers giving their time and efforts in order to make the activities and success, and the message that cancer can be fought, with everyone pulling in the same direction.

The Maximize Life Campaign: South Asia Embraces the Spirit of Max

blogpost406_1The Indian subcontinent has always been characterized by the stoic inner strength of its population that has helped them overcome natural and man-made disasters that seem to always be lying in wait for them. Burdened by their large populations, poor economy and the inept administration of their largely unstable governments, it has fallen upon the people to come to their own rescue.

And it is not so different for their health either. Besides the share of debilitating infectious diseases, many are facing a rising incidence of non-communicable diseases, such as cancer. The challenges here go beyond funding. There is fear, denial, and the heavy burden of stigma.

And yet, we see an indomitable spirit within our community that helps them overcome the toughest situation in their lives, seize available opportunities, and make the best of it. Through the power of belief, faith, and the humbling sense of brotherhood that brings their greatest strength, people in the South Asia region do everything they can to support each other and maximize their lives.

This is what we celebrate through our Maximize Life Campaign: by sharing the burden of disease among each other, immense strength is gained. The ability to rise above our deprivation leads the way to a life of service to others.

Whether it is a student of rural agriculture in Bangladesh, a government servant in Nepal, a young physician working in the hinterlands of Sri Lanka, or a bus conductor in a district of Western India, these are the achievers in the true sense of the word. And not just achievers, but advocates and role models.

So this year we celebrate and honor these superhuman beings who have been extraordinary advocates and have found unique ways to give back to society. They have shown us how to cope with the diagnosis and live life as winners. Not only have they looked after themselves but spent the time post-diagnosis providing specialized services to others.

These are men, women, and young adults who have set up support groups, schools, non-profits, and community centers in different parts of the region to show the way forward to so many others.

In the very centers that they have created, they will stand up and speak out. Throughout the land, all through the month of October, they will speak out against stigma and other perceived diminishing aspects of cancer and share their inspiring stories with the public. Their reach will be further maximized by using the power of the Internet and they will, in specially made videos, share with the world their incredible journey into a future that has no place for fear or stigma. Only the power of Maximizing Life.

A Heart to Heart Interview About Max, in Honor of His Birth Anniversary on October 19th

Every year, throughout the month of October, we honor Max and his legacy by partnering with our network of cancer organizations to carry out the Maximize Life Global Cancer Awareness Campaign. It is a month of service that aims at decreasing stigma and increasing hope for people living with cancer around the world.

It is Max’s story that originally inspired the birth of the organization. It is all of the cancer survivors, advocates, and patient leaders around the world that continue to inspire us today. In this way, our past and our future are interconnected.

As a very special tribute, we bring two friends and colleagues together to talk about Max the person. Pat, our CEO and Max’s step-mom was interviewed by advocate, cancer survivor and team member, Fan. Their bond, their friendship, their mutual respect and their shared mission are all revealed through an intimate conversation.

Listen to Pat reflect on Max’s story and legacy.

To bring light to this powerful shared story, we availed an exciting new storytelling platform created by the non-profit organization called StoryCorps. By using StoryCorp technology, this meaningful journey is documented for posterity, as well as for sharing easily with all of you. We are looking forward to using StoryCorps for future storytelling opportunities.

We invite your thoughts and comments below in recognition of October 19th. In honor of Max and in partnership with all of you, we thank you for listening.

The Maximize Life Campaign: Asia Pacific Region Patient Groups Are Telling Their Stories.

blogpost403_1-1Nothing is more powerful than storytelling, especially when it’s told from a person’s first-hand experience.

In the Asia Pacific region, we are often known as “shy” community. We do not often share our stories publicly, especially a story about cancer diagnosis. We often have no one to turn to because we do not want our parents to worry; we do not want our children to feel the burden; we do not want to tell our neighbors who might be starting to avoid us because we are diagnosed with cancer.

But we need to change this phenomena. We need our community to understand the life of a person who is diagnosed and living with cancer. We need to create a better support system in our community, our country, and our region. We need to start telling our stories!

So this year, in the month of October, the Asia Pacific patient groups who are part of Max Global Network are putting up various platform to tell their stories:

  • Patients sharing their personal stories within patient groups
  • A public walk at a local park to interact with public
  • Book readings
  • Physicians speaking to patients to reduce doubts

Through these events, patients and caregivers are taking a courageous step to achieve their goals: raise cancer awareness in the community; close the gap between treatment available and treatment access; increase the level of disease understanding; advocate for non-discrimination towards people diagnosed with cancers; and ask for more attention from policy makers to channel more resources to the well-being of cancer patients.

A highlight of the patient groups’ initiative this year is Walk for CML, organized by Max Family Society Malaysia. The members of patient groups are all gearing up to walk with their physicians, nurses, friends and also members of public! They aim to send out three key messages through Walk for CML, which are “CML is not infectious,” “CML is not hereditary” and “CML is not humiliating.”

Do check out the Maximize Life Campaign events taking place in your local community and show your support today!

The Maximize Life Campaign: Africa and Middle East

blogpost401_1This year, like past years, 16 patient support groups in Africa and Middle East have joined the Maximize Life Campaign with enthusiasm and excitement. All the groups in Africa welcome back our friends from Sierra Leone who inspired us all with their resilience in the face of the Ebola epidemic that touched their country.

The month of October has become synonymous with a month where advocacy, disease information, and the fight against the stigma of cancer is at the frontline in the region. Many of the campaign events have invited local medial to increase the reach and visibility of the local support groups. Members of the groups have used their social media platforms to let the world know they are alive and living well with CML because they have access to treatment.

Patient leaders from Africa are taking to the airways during Maximize life to call on their local governments to get involved and increase access to treatment and monitoring tests for all cancer patients. Support group members are openly sharing their stories. Members want to educate their community on the importance of early cancer detection and treatment. They especially want to show that it is possible to be a productive member of society when one has access to treatment.

The 2015 Maximize Life Campaign Has Begun!

blogpost399_1October is my favorite month of the year. It marks a changing of the seasons in both the southern and northern hemispheres that brings a sense of reflection and excitement. As such, there could not be a more appropriate month to celebrate theMaximize Life Global Cancer Awareness Campaign, an initiative that encourages people impacted by cancer to reflect on their experiences, celebrates their resiliency, and share their stories with the world.

Why is it valuable to tell our story? Sharing our stories is a transformative process for ourselves and the people with whom we choose to share them. On a personal level, it allows the storyteller to name their experience. In doing so it provides us the potential to transcend our experience, using it to encourage others facing similar hardship. Finding courage in the face of a cancer diagnosis, maintaining hope through the darkest periods of treatment, strengthening ties with loved ones or lost friends through adversity – these are the stories of millions of seemingly ordinary people around the world, and their voices need to be heard.

This is the core of the 2015 Maximize Life Global Cancer Awareness Campaign – to provide a space for people to share stories with their community in order shine a light on the needs and provide hope for those facing cancer. Thanks to the 71 patients and caregivers who submitted their personal stories to the Maximize Life Essay Contest and the 39 partner organizations of the Max Global Network that will host awareness events in their communities, many of these stories will be shared throughout October. These events will take place in 35 countries throughout Africa, Asia and Latin America.

October is going to be a very full month! In order to capture it all, we’ve created a special 2015 Maximize Life Campaign website to showcase the worldwide events and all the essays submitted to the Maximize Life Essay Contest

Check the webpage weekly for event highlights and the announcements of the winning English, Spanish and French essays to happen throughout October!

Sharing our stories requires honesty and vulnerability and the willingness to put one’s self out there for the sake of encouraging others and raising global awareness about the needs of people living with cancer. We are very grateful for the advocates who chose to share their stories through the Maximize Life Essay Contest and the numerous advocates who will share their stories at public awareness events hosted by our partners of the Max Global Network throughout the month of October. Let the storytelling begin!

See How You Made a Difference in 2014

InteractiveWeb2014 Annual Report

We are excited to share our 2014 Annual Report with you! This year, our Annual Report outlines how The Max Foundation is building on its mission to increase global access to treatment, care, and support. We detail how our organization is building ecosystems that help people facing cancer in a myriad of ways: from medical treatment to emotional support; from patient education to community engagement. Throughout the report, we feature patient leaders who work to give back to their community. And of course, we transparently report on our finances.

Our Annual Report serves to capture the year in writing. It is a chance to see what we have accomplished, where we are headed, and how your contribution to The Max Foundation made it happen. Download the 2014 Annual Report and discover how your support and partnership made an impact in 2014.

Nurses Filling the Gap for Patients in Southern Africa

blogpost391_1In an ideal world, a diagnosed cancer patient would receive disease and treatment information from their physician and healthcare workers at the clinic. With access to technology, they would broaden their knowledge and gain additional support from a patient group. Family and community members would also play a supportive role in searching for information and support.

The reality in Southern Africa is not ideal and can be very harsh for patients.

Working in South Africa comes with many challenges. Many of these challenges are shared with other African countries and likely shared by many around the world:

  • Patients live far away from clinics and have limited access to specialized physicians.
  • Patients do not have residential addresses or postal addresses – Block 5 Tree 16 is not reliable information.
  • Patients speak various languages (11 official languages in South Africa to be specific) and many are illiterate.
  • Patients do not have access to phones, cell phones or the internet.

We spend a lot of time sharing information with physicians and educating patients on ground level but we often forget about those who spend most of their time with patient – drawing blood, filling out forms, and administering treatment – our wonderful, supportive assistive healthcare workers a.k.a. nurses!

I shared my vision with Danielle that we should start a program in which we provide supportive healthcare workers with basic information on chronic myeloid leukemia (CML) which they can relay to patients. They are not to take over the role of the physician but simply emphasize key messages, especially in areas where we do not have patient groups or reach. Last month, Max presented the first Workshop for Assistive Health Care Workers!

The two-hour session was attended by 25 nurses from the oncology centre in Windhoek. The workshop explained the journey of a CML patient and how in the current situation the patients have limited access to information.

I asked the nurses, “As you are the ones spending the most time with CML patients, do you talk with them about the disease – give them info or answer questions?” The answer shocked me:

“We are afraid to speak with the CML patients because we don’t know what to say to them and do not have answers to their questions. We do not know anything about their disease.”

By using the booklet, which uses basic language and illustrations, I explained the what, how, why, and what now about CML. This is the exact information that we would share in a patient education workshop in the same language used by patients.

The result and feedback following the session was very supportive! Several nurses expressed gratitude in the training and felt empowered to assist CML patients. The head of nursing at the clinic requested a follow-up session as there was an additional 40 nurses who wishes to attend the session and those in attendance also wanted more information!

We will be presenting this workshop in other Southern African countries over the next few months, Zimbabwe, Botswana and Mauritius and then start with the follow-up workshops. We also asked the nurses to assist in identifying patient leaders and in the establishment of a patient group within their region.

I am really excited and grateful that we found this “link” between patients and information. It is a fantastic opportunity to educate and empower people who are in positions to educate and empower patients, where we do not have other mediums to do so. Stay tuned to learn how this project develops – this is just the beginning!

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