Chai for Cancer USA on the Road

blogpost388_1This summer, India Country Head Viji Venkatesh is crisscrossing the USA to host Chai for Cancer addas and share The Max Foundation vision. Started in India, Chai for Cancer is our global initiative to invite our community to partner with us. There have already been a number of events in Houston, Charlotte, and New Jersey with more to come!

We are using chai addas, a term akin to gathering, as a model for bringing people together. Watch Viji explain what an adda is.

Choice Organic Teas has generously donated their spiced chai tea for our events throughout the country. Thank you Choice! But as Viji explains through the story of the Soup Stone, addas are also an opportunity for people to come together and contribute food, snacks, stories, and love on top of the tea. That’s what makes a party!

We have already experienced great community and generosity from people who have attended a Chai for Cancer adda and we hope to see you at a future event. Like our Chai for Cancer Facebook page to get updates about future events and see photos from past events.

Thanks to all of our supporters, new and old, for joining us to Drink to a Cause!

Max CEO’s Ongoing Commitment to Treatment Access Solutions Recognized by iCMLf ERSAP Prize

We’re often reminded of why we put an effort in supporting people facing cancer – whether it comes through a patient story or through an organization’s investment in our work. This week, we humbly received another reminder: on Friday, May 22, the International Chronic Myeloid Leukemia (CML) Foundation awarded our CEO Pat Garcia-Gonzalez with the inaugural ERSAP (Emerging Region Support and Partnership) Prize. The iCMLf Directors and Scientific Advisors selected Pat because of her continued commitment, and The Max Foundation’s aim, to help people face cancer with dignity and hope.

Tim Hughes, iCMLf Chair, stated, “Pat strongly believes that people living with CML have the right to access the best possible treatment and support, wherever they live. This is why she has been so determined to make new drugs for CML fully available to patients in emerging economic regions through access programs, education and global advocacy efforts.”

“I am honored to receive the first ever ERSAP Prize and thank our partners at the International CML Foundation for their recognition.” Pat stated. “I take this award as an opportunity to reflect on how providing access to life-saving treatments to people around the world makes our global community stronger and a more just place to live. There are still so many people around the world who deserve advocacy and support and we carry out our work on their behalf. This award reignites our passion for finding innovative solutions to help people face cancer with dignity and hope.”

You can read further details about why Pat was selected for the ERSAP Prize on the iCMLf announcement.blogpost384_1

What is a Mela? More About Leadership Summit 2015

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Pat shares to a group of Friends of Max during the Workshop Mela.

Our Guest Bloggers collaborating on this summit overview are members of The Max Foundation team based in India who led and participated in the Friends of Max 2015 Leadership Summit. They include Shilpi Sirohi Singh, Ashika Naik, Ameya Surve, and Priyanka Kandalgaokar.

In India, the word “Mela” means ‘gathering’ or ‘to meet’ or a ‘fair’. India is a land of fairs and festivals – every month there are festivals held throughout the different regions of India.

Even though there was no festival on the 19th of May in Hyderabad, it was as if the city was in a festive mood on the second day of our the Friends of Max 2015 Leadership Summit (read the recap of our first day here) which was all set up like a Mela or festival. In honor of the day, we adorned the four corners of our venue with colorful balloons and decorations to make it look like a true Mela. However, our Mela was not simply a party. The four corners of the Mela each featured a workshop:

Workshop 1: Volunteer Training

For Friends of Max, volunteers plays a central role in creating awareness of the program, educating patients, and raising funds. At this workshop, participants discussed ways to identify volunteers and strategies to train and retain them.

Workshop 2: Care for the Caregiver

Caregivers – spouses, siblings, parents, or friends of a patient – face a distinct set of issues, whether they are financial, social, or emotional. For instance, a daughter desperately managing her mother’s treatment may struggle to ensure her education is not affected.

This workshop on caring for caregivers offered ideas and strategies on supporting caregivers with their particular issues. It proved to be a popular topic – many participants felt the workshop provided them with a platform to share their concerns and requested future event sessions focused on further addressing the needs of caregivers.

Workshop 3: Advocating for Oneself

When people living with cancer are able to advocate for themselves, they are able to effectively communicate an interest, desire, need, or right – and negotiate to resolve it. Effective self-advocates understand individual strengths and needs, can develop personal goals, and learn to recognize legal rights and responsibilities. Leadership Summit participants discussed various health insurance topics, such as disclosure in policy diagnosis, insurance available without medical checkups, and applying for insurance online.

Workshop 4: Working With our Physicians

People facing cancer have better health outcomes when their physicians are effective, empathetic communicators. When a patient is able to talk with their doctor, they learn to trust their doctor and are able to advocate their needs. By strengthening this relationship, patients will be more willing to follow their doctor’s instructions, leading to healthier decisions and results. Many factors come together to contribute to building a strong relationship with our physicians which ultimately helps the cancer survivor to build self-confidence.

Overall, the Mela was a great success as a platform for the second day of the Friends of Max 2015 Leadership Summit and participants actively engaged in their workshops. It was an honor to be among such accomplished individuals and to be able to participate in the Workshop Mela. Congratulations to all the participants for their successful contribution to this historic event!

Learning About Leadership from Friends of Max in India

 

Our Guest Bloggers collaborating on this summit overview are members of The Max Foundation team based in India who led and participated in the Friends of Max 2015 Leadership Summit. They include Shilpi Sirohi Singh, Ashika Naik, Ameya Surve, and Priyanka Kandalgaokar.

Last month, Friends of Max (FOM), the support group arm of The Max Foundation (Max) in India gathered for their second Leadership Summit in Hyderabad. Friends of Max is a charitable trust registered in India comprised of individuals impacted directly and indirectly by chronic myeloid leukemia (CML) and gastrointestinal stromal tumors (GIST). More than 120 City Chapter leaders and the whole team from The Max Foundation in India attended the meeting on 18th and 19th April 2015. This event rallied advocates and practitioners who serve and support people living with cancer in India. It was a full couple of days!

The highlight of the first day was the medical session focusing on issues related to long-term therapy in CML and GIST, chaired by Dr. Pankaj Malhotra. Physicians from the FOM Medical Advisory Board shared their valuable inputs on this important topic. The physicians from our network in Hyderabad joined by the senior physicians and Max CEO, Pat Garcia-Gonzalez, discussed establishing a consensus or guidelines for managing CML and GIST in the subcontinent.

Efforts and courage are not useful without purpose and direction, and we know this through the tireless work of the Friends of Max City Chapters. In the afternoon, six City Chapters showcased activities and achievements which won them recognition as Best Practices at the Leadership Summit:

  • The Pune City Chapter, the youngest among all the chapters in India, presented their strategy for becoming a full-fledged City Chapter in a very short time span. Their motto for forging ahead is ‘being together is success’ which was seen through their cohesive team spirit.
  • The Delhi City Chapter educated us in fundraising partnerships as seen through their work with a famous Delhi Cancer hospital – Rajiv Gandhi Cancer Institute (RGCI). Every core member from the Delhi chapter was involved in the event. Doctors and their team donated generously for the event.
  • The Kolkata City Chapter discussed the various aspects of fundraising and the many concerns a donor may have prior to donating to the cause: tax rebates, belief in the institution, and confidence in the leadership.
  • The City Chapter of Patna shared how every year since their 2008 launch, they have been successfully conducting regional meets with a steadily growing group of participants. These meetings serve as a camp for patients and give them a chance to interact with their physicians. Along with fundraising, they also have entertainment for the participants with a toy-train ride, a play, and steamer ride on the Ganges!
  • The Ranchi City Chapter detailed challenges and solutions in their 10-year long journey before successfully hosting their first regional meeting. They gained the support and presence of a political leader, which made the participants feel welcome and respected. At their meeting various issues, such as compliance, patient queries, and side effects were discussed. It was a place to network and bond together among volunteers, patients, and physicians.
  • The Indore City Chapter, representing the large state of Madhya Pradesh, shared information about their 2014 regional meet, including their excellent medical sessions and a drama therapy workshop. The Indore City Chapter also invited media to cover the meeting in the local newspaper, which helped raise awareness of the Friends of Max mission and purpose.

The Leadership Summit was off to a great start with all the best practice sharing so that leaders could learn from each other. And we still had another day ahead of us! Check out our post about the second day and learn what a ‘Mela’ is in India!

Colors of Hope in The Lancet Oncology

blogpost383_1At The Max Foundation, increasing global access to treatment for people around the world living with cancer is a core element of our mission. But access to treatment is only one piece in helping all people facing cancer live with dignity and hope. Fostering care and support for patients processing the hardships of cancer is essential.

The Colors of Hope Art Collection began as a project of The Max Foundation in 2005 in an effort to provide a creative outlet for people impacted by a cancer diagnosis. Through the Colors of Hope Art Collection, people living with cancer and their caregivers are invited to convey their experience through art. Since the project’s inception, we have received over 2,000 works of art that tell a complex yet common story. From fear and confusion, to acceptance and love, the emotional spectrum shared through the artwork provides a glimpse into the artists’ struggles and hope.

For their 2015 journal covers, The Lancet Oncology is featuring pieces from the Colors of Hopegallery. We are excited to see each monthly issue feature a different piece of art, and for that art to be shared with cancer practitioners and the community more broadly. Scroll through the gallery above to see the covers released so far and visit The Lancet Oncology for future issues. Read more about the Colors of Hope Art Collection.

The Max Foundation & Friends of Max Bolster Long-standing Partnership with MOU Signing

Pat and Friends of Max Trustees signing partnership agreement.

Pat and Friends of Max Trustees signing partnership agreement.

The Max Foundation (Max) and Friends of Max (FOM) proudly announce the formalization of their long standing collaboration supporting people living with chronic myeloid leukemia (CML) and gastrointestinal stromal tumors (GIST) in India. The two organizations signed a landmark Memorandum of Understanding (MOU) at the recent Friends of Max 2015 Leadership Summit attended by Max CEO, Pat Garcia-Gonzalez in Hyderabad on April 19th.

Viji Venkatesh, Max’s Head of India shares an historical perspective, “In 2003, leaders of Max’s team in India and community leaders agreed to collaborate on providing free support services to families affected by CML and GIST in the country. This collaboration resulted in the formation of Friends of Max, a Charitable Trust registered with the Charities Commissioner’s Office in Mumbai. Today, we celebrate our MOU signing to enable greater support to people living with CML and GIST across the country.”

Pat Garcia-Gonzalez of Max remarks, “Since its inception, Friends of Max has served as the patient support arm of The Max Foundation. We are a united force. We are grateful for our partnership of so many years and full of hope as we look ahead to how much we can accomplish together.”

We Are Officially Engaged…With Our Seattle Community!

Pat alongside Max advisory board members.

Pat alongside Max advisory board members.

The Max Foundation’s new headquarters is still buzzing with all the great energy that filled our offices thanks to new and old friends that attended our recent Open House on April 9th. We welcomed our Seattle community to join us on what we called our world tour. Visitors were invited to move from region to region in order to learn about our work in Asia Pacific, Africa, Latin America and, of course, North America.

Each guest was greeted with their own personal passport and a glass of champagne to begin their journey. At the various regional stations, folks got their passports stamped by Max team members while they enjoyed tasty treats from countries where we have our regional offices: Argentina, India, Malaysia and South Africa. The only thing missing were our team members themselves who were with us in spirit!

Throughout the event, we were able to learn lots about our visitors and they seemed to, also, enjoy networking with each other. Many of our current partner organizations were present and friends who have helped us along the way, from consultants to designers. It was exciting to have everyone with us for our house-warming and it indeed made the world feel like a much smaller place!

Please be sure to click through our gallery of photos to enjoy our event vicariously.

Thanks to everyone who join us! We look forward to staying connected!

Partnering to Bring Access to PCR and Mutation Testing to the Philippines

For people living with chronic myeloid leukemia (CML), regular disease monitoring using polymerase chain reaction (PCR) testing is critical to achieving successful health outcomes. Mutation testing is another key test for individuals who fail to respond to one or more treatments. Despite the importance of these tests, they are unaffordable and therefore inaccessible for many people living with CML in the Philippines.

A few months ago, The Max Foundation received a request from the Philippine General Hospital (PGH) for mutation analysis of some of their patients who have failed to reach the therapeutic milestones with their current treatment. PGH is a government hospital that serves more than 350 people living with CML in the Philippines.

The Max Foundation, in partnership with the local patient group Touched by Max (TBM), the International Chronic Myeloid Leukemia Foundation (iCMLf), SA Pathology and the University of Adelaide, and Fred Hutchinson Research Center, were able to arrange for 30 CML patients who were not responding to their current therapy to receive both PCR and mutation testing. The Max Foundation, TBM, and the iCMLf worked to coordinate the shipping of necessary testing materials to PGH for the mutation tests, and on March 24th, the PGH medical team assisted in taking the blood samples of the 30 individuals, the majority of whom had shown a lack of response to their first and second treatment options. Simultaneously, PCR tests were also collected for the same individuals thanks to the donation of easy to use paper diagnostic cards donated by Dr. Jerry Radich of the Fred Hutchinson Cancer Research Center. The cards were sent back to the Fred Hutchinson Cancer Research Center for analysis, while the mutation tests were sent to the University of Adelaide, Australia for mutation analysis.

The 30 people who were selected to receive the tests was extremely appreciative of being chosen as recipient of this project. Florenda, 44 years old who has live with CML for almost 15 years, said that even if the result are not good, it means a lot to her that her blood will be analyzed. Likewise, another CML survivor named Oscar said, that he is lucky to be selected to help his physician choose the right treatment protocol. It strengthens his hope to fight his disease. On the other hand, Mary Joy immediately sent a thank you message. She mentioned that it was her first time to have PCR and mutation test since she was diagnosed five years ago.

Dr. Rico Paolo Gomez Tee, the Chief Fellow in the Section of Hematology also said “We are now at an age where we have to do more for our patients. We have discovered more about the biology of the disease, and we have seen its behavior when things go awry. Thus the importance of molecular monitoring and mutation testing. Molecular monitoring makes us more confident in assuring that the leukemia is “asleep”. Eventually, as future researches come, we look forward to achieving a total cure where patients would stop taking drugs and be worry-free that their CML would not come back. There are times when even with excellent care, our patients do not seem to respond to treatment. And thus the further need for mutation testing. Such an examination would allow the physician to tailor treatment strategies for the patient. All of these strategies translate to excellent patient care, where thankfully the iCMLf and The Max Foundation have been very supportive especially to less fortunate countries. Efforts such as molecular monitoring and mutation testing have changed the therapeutic landscape of CML in the Philippines. Hopefully, the Philippines receives continuous support for our patients.”

Announcing Max CEO as recipient of National Cancer Institute Global Cancer Medicine Humanitarian Award

blogpost376_1The Max Foundation is proud to announce CEO, Pat Garcia-Gonzalez as the recipient of the National Cancer Institute Global Cancer Medicine Humanitarian Award at the U.S. National Cancer Institute 3rd Annual Symposium on Global Cancer Research held in Boston on 25 March 2015.

In the award letter from the National Cancer Institute(NCI), Dr. Edward L. Trimble, MD, MPH, Director of the NCI’s Center for Global Health writes about Pat: “Our global cancer community has been inspired by your outstanding contributions to advancing cancer care equity through The Max Foundation, and as recognition of that work, we would like to honor you.”

Dr. Trimble continues, “Not only have your efforts saved numerous lives, but, to paraphrase Donald Berwick, your contributions go beyond health metrics and health indicators— your contributions will allow mothers and fathers to attend graduations and weddings they would have missed, and grandchildren to know grandparents they might never have known, and holidays will be taken, and work completed, and books read, and symphonies heard, and gardens tended that, without your work, would never have been.”

In response to the award, Pat has said, “I am humbled, excited and honored by the recognition given to me thanks to NCI’s Center for Global Health. I see this moment as an opportunity to tell the world about the great collaborations that have made my work possible, as well as a chance to reinforce our collective responsibility around creating solutions to increase global access to treatment, care and support for people living with cancer around the world.”

This is the first Global Cancer Medicine Humanitarian Award to be given at the NCI’s Symposium.

With Love in Every Stitch Brings Smiles to the Philippines!

On October 23rd we visited the out-patient department of the Philippine General Hospital to distribute a recent shipment of hats that we had received from With Love in Every Stitch. It was amazingly beautiful to see the faces of small children queuing up to choose the hats they liked. The children were fascinated with the colors and designs of the hats. They gladly tried them on and proudly showed them to their parents and the other children.

After distributing hats in the out-patient department, we made our way upstairs to distribute hats to those who were confined in the ward. They were delighted as well when we came up to their room to give the hats.

One person who specifically stood out to me was a 14-year old girl who is facing the possibility that she may need to undergo leg amputation due to bone cancer. She was all smiles when she put on her hat. It was a small present but all of the children’s smiles was more than enough to express their appreciation. Hats off to all the donors of the hats!!!

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