May 14, 2013
Contact: Erin Schwartz, 425-778-8660, Eschwartz@Themaxfoundation.Org; Karla Jijon, 704-525-3074, Kjijon@Tanne

Tanner Pharmaceuticals Partners With Max To Provide Oncology Products In Chile

Charlotte, NC- Tanner Pharmaceuticals Inc. (“Tanner”) has partnered with The MAX Foundation (“MAX”) in order to provide patients in Chile an oncology product that currently is unavailable in the market through a compassionate use program.
Since 2012, Tanner Pharmaceuticals and The MAX Foundation have worked together to provide low-income patients in Chile access to product that is currently unavailable for purchase within the country.  Products that are provided through this foundation are intended for patients that cannot afford the cost of the product or the importation process. 

“We have partnered with various hospitals, clinics and laboratories all over the globe since 2002 in order to provide inexpensive pharmaceuticals that are not currently available in the country,” said Maryori Alvarenga, Director of Sales and Operations for Tanner Pharmaceuticals. “Working with The MAX Foundation has given us the ability to continue offering our services but at a compassionate level in order to provide needy patients the same service and access to product so they can continue their treatment. We are pleased to be part of this partnership.”

The MAX Foundation (MAX) is a US-registered non-profit organization with a global focus on cancer.  The organization serves people living with blood and rare cancer worldwide by facilitating access to treatment, supporting patients, partnering with healthcare providers and building advocacy efforts in communities around the world.

The MAX Global Helpline provides FREE services of advocacy, emotional support, informational referrals and fundraising mentorship. Through a highly dedicated team of US and local advocates based in targeted countries, families receive personalized support services.  Each year MAX provides FREE services to over 23,000 families in more than 100 countries.

“Our vision at The MAX Foundation is a world in which all cancer survivors have access to the best treatments, care, and support available.”

About Tanner Pharmaceuticals Inc
Tanner Pharmaceuticals Inc. specializes in developing customized sales and logistics programs for pharmaceutical companies whose products address unmet medical needs in developing markets. Our services include Named Patient Sales, Compassionate Use Distribution, Pre-Approval Sales, Direct Marketing, International Tender Management, and comprehensive Logistic Support. Tanner’s fully compliant distribution facility in Charlotte, NC allows us to customize the supply chain to meet the needs of a broad range of pharmaceutical, biological and medical device products. For additional information about Tanner Pharmaceuticals Inc., please refer to the company’s website at www.tannerpharm.com.

April 29, 2013
Contact: Erin Schwartz, Director Of Global Advocacy And Strategic Partnerships

Above & Beyond Cancer Award Presented To Max & Novartis For Helping Patients In Emerging Countries

Distinguished award for supporting international cancer patients highlights the importance of equal access to treatment for people with cancer, no matter where you live

Des Moines, Iowa; USA—

The Above and Beyond Cancer Award was given to The MAX Foundation (MAX), in partnership with Novartis Oncology, for dedication to elevating the lives of those touched by cancer to create a healthier world.  The collaboration among these global organizations to help international patients exemplifies the benefits of partnering, as well as the value of access to treatment for people living with cancer in low and middle income countries.  This award, tied to the story of a patient in Nepal who is a courageous mountaineer that benefitted from a global access program for treatment of leukemia, is one that resonates because it represents the difference between giving up your life because of cancer and maximizing your life with cancer.

At the award ceremony on Friday, April 19th, MAX and Novartis were honored by the Above and Beyond Cancer organization among other distinguished guests.

• Senator Tom Harkin ~An individual award, in recognition of his tireless support for cancer issues over nearly four decades in the United states Congress
• Hy-Vee ~ A corporate award, in recognition of their relentless efforts with the “Healthiest State Initiative”
• Senator Pat Ward ~ A memorial award, in honor of passing the Iowa Smoke Free Air Act and her leadership in the state Legislature
• The MAX Foundation~ A nonprofit award, selected for their commitment to underserved populations in countries including Nepal and Tanzania

In her speech accepting the award, Senior Program Officer at MAX, Danielle Matia expressed, “What is significant about our Nepali friend’s story is that it is not unlike that of so many other amazing people around the world affected by cancer. The defining moment in this story was when she got access to treatment. So we take this opportunity to genuinely thank Novartis Oncology for saving her life, as we send out a call to action for other companies to come forward with access solutions that will make a difference.”

The MAX Foundation (www.themaxfoundation.org) is grateful for the opportunity to shed light on the global dialogue around the importance of access to treatment for people living with cancer worldwide.

About The MAX Foundation: www.themaxfoundation.org
The MAX Foundation (MAX) is a US-registered non-profit organization with a global focus on cancer. The organization serves people living with blood and rare cancer worldwide by facilitating access to treatment, supporting patients, partnering with healthcare providers and building advocacy efforts in communities around the world.

About the Glivec International Patient Assistance Program (GIPAP): www.gipap.org
Novartis designed GIPAP to provide Glivec (imatinib) free of cost to eligible patients in developing countries who meet specific medical and socio-economic guidelines. Through The MAX Foundation, GIPAP also provides information and referral assistance to patients, their family members and caregivers.

About Above and Beyond Cancer: www.aboveandbeyondcancer.org
Above + Beyond Cancer is a public charity with a mission to reduce the burden of cancer across the globe. The organization pursues this mission through a team of internally developed “super-advocates” who leverage their creative talents as writers, filmmakers, musicians, lobbyists, fundraisers, and speakers to provide a uniquely engaging and inspirational approach to cancer advocacy.

October 16, 2012
Contact: Erin Schwartz

First Africa Patient Leader Workshop

FOR IMMEDIATE RELEASE

FIRST AFRICA PATIENT LEADER WORKSHOP RESULTS IN DAR-ES-SALAAM DECLARATION
Africa Network of Chronic Myeloid Leukemia (CML) Organizations Formed

Dar-es-Salaam, Tanzania

The First Africa Workshop for Chronic Myeloid Leukemia (CML) advocates took place in Tanzania on October 13th 2012. Patient leaders from 12 countries in the region signed the Dar-es-Salaam Declaration, agreeing to: the formation of the Africa Network of CML organizations “CML Life Africa”; increasing awareness of the needs of people living with CML in Africa; and upholding the Baveno Declaration set forth by the CML Advocates Network in June 2008.

Led by Pat Garcia-Gonzalez, Executive Director of The MAX Foundation (MAX) and Ms. Bahija Gouimi, President of AMAL, the Moroccan CML Patient Association, the workshop aimed at increasing understanding of the disease; sharing best practice, and identifying common goals. Pat Garcia-Gonzalez expressed: “CML is a rare form of leukemia which provides a great case study of the possibility of successfully treating cancer in low and middle income countries. The formation of this network of CML organizations from the region will allow everyone to strengthen their efforts and their impact. The CML community welcomes this regional network and looks forward to bolstering their efforts to seek the support of all stakeholders to optimize the treatment of CML in the region. While the unprecedented access to imatinib therapy in the region has resulted in survivors able to achieve good quality of life and give back to their communities, improvements in education, technology and access to new therapies is urgently needed.”

Senior Program Officer at MAX, Danielle Matia expressed, “This workshop was only possible because of the dedicated effort of all the patient leaders who participated.  After years of collaborating informally, it was amazing for everyone to come together and agree on the next steps for patient advocacy in Africa.”

This program was made possible thanks to sponsorship from Novartis Oncology, Ariad Pharmaceuticals and Bristol-Myers Squibb.

About The MAX Foundation: www.themaxfoundation.org
The MAX Foundation (MAX) is an international non-profit dedicated to improving the lives and survival rates of patients with blood cancer and rare cancers worldwide.

About Association des Malades Atteints de Leucémies (AMAL):
AMAL is a national Moroccan association supporting patients and children with leukemia, as well as their relatives, while raising awareness.

July 03, 2012
Contact: Erin Schwartz

Physician Forum Draws Attention To Gist Treatment Needs In Emerging Regions

FOR IMMEDIATE RELEASE      

PRESS CONTACTS:   

Sara Rothschild (srothschild@liferaftgroup.org) 
The Life Raft Group: 973-837-9092

Erin Schwartz (erin.schwartz@themaxfoundation.org)
The MAX Foundation: 425-778-8660
 
PHYSICIAN FORUM DRAWS ATTENTION
TO GIST TREATMENT NEEDS IN EMERGING REGIONS

ASCO Event Highlights Medical Issues that Need Attention around the World

Chicago, IL—The Global GIST Network, in partnership with the Life Raft Group and The MAX Foundation, hosted an event for physicians from low and middle income countries on Friday, June 1st during the time of the American Society of Clinical Oncology (ASCO) conference.

The meeting drew physicians from many countries as they discussed best practices for Gastrointestinal Stromal Tumor (GIST) and convened a panel to discuss GIST case studies. Panelists included Dr. Dennis Tudtud, Vicente Sotto Memorial Medical Center (Cebu City, Philippines); Dr. Matías Chacón, Instituto Alexander Fleming (Buenos Aires, Argentina); Dr. Yoon-Koo Kang, Asan Medical Center (Seoul, South Korea); and Dr. Jonathan Trent, Sylvester Cancer Center (Miami, USA).

Key themes during the group discussion with the panel included:

• How treatment options improve with more accurate diagnosis
• The cost of diagnostic tests as a primary healthcare challenge within low and middle income countries
• In the US, community oncologists continue to undervalue the benefits of mutational testing
• Few low and middle income countries  are utilizing mutational testing because of inaccessibility
• Surgery is the standard of care in local disease
• Adjuvant imatinib therapy benefits both  intermediate and high risk patients
• After failure of standard imatinib and sunitinib, emerging new treatments may include: Investigational new agents or a re-challenge of imatinib/sunitinib

The event provided an opportunity for networking among key opinion leaders and physicians treating GIST in low and middle income countries. Case studies and solutions were presented to facilitate a dialogue around GIST treatment needs globally.

This forum aimed to improve the knowledge among physicians on how to accurately diagnosis this rare cancer. It also focused on the importance to educate physicians about current and emerging treatment choices for GIST patients, as many local oncologists are unfamiliar with the latest GIST treatment options.

About The Global GIST Network: www.globalgist.org
The Global GIST Network, presenting the event, is a worldwide directory of resources for GIST patients and their families, highlighting options in many countries and languages.  The network is comprised of organizations that support access to treatment for GIST patients through local liaisons, web pages and information sharing.  The Life Raft Group is one of the creators of the Global GIST Network and The Max Foundation is a participating member.

About the Life Raft Group: www.liferaftgroup.org
The Life Raft Group (LRG) is a 501(c)(3) organization with a simple focus:  to cure a form of cancer — GIST (gastrointestinal stromal tumors) – and to help those living with it until then.  Our mission is to ensure the survival of GIST patients through a comprehensive approach connecting individual patients’ needs, the worldwide community of GIST advocates and the global health and research environment.

About The MAX Foundation: www.themaxfoundation.org
The MAX Foundation (MAX) is an international non-profit dedicated to improving the lives and survival rates of patients with blood cancer and rare cancers worldwide. The vision of MAX is a world in which all cancer patients have access to the best treatments, care, and support available. Through the MAX International Patient Helpline, each year the organization provides free advocacy and support services to over 20,000 families from more than 100 countries.

October 11, 2011
Contact: Erin Schwartz, 425-778-8660

Executive Director's Address At Celebration Of Life Event Benefitting Children Living With Cancer

** For Immediate Release **

Details:
The event was organized by Mr. Wondu Bekele, General Manager of the Mathiwos Wondu-YeEthiopia Cancer Society and carried out in partnership with The Max Foundation and the esteemed oncologists at the Black Lion Hospital

Date: Saturday, October 8, 2011

Location: Black Lion Hospital in Addis Ababa, Ethiopia

The Max Foundation’s Executive Director, Pat Garcia-Gonzalez was honored to participate in the Addis Celebration of Life, organized by the Mathiwos Wondu-YeEthiopia Cancer Society on October 8th. The gathering marked a week of first times in Addis; first time that a representative of the Federal Ministry of Health participated of a community meeting of this kind, first time representatives of the media were present, first time parents of children with cancer were able to voice their concerns and demand better services. It was also a week in which for the first time, molecular monitoring of cancer treatment was done anywhere in Sub-Saharan Africa.

Pat’s address to all those who attended the Celebration of Life in Addis follows:

Dear Mr. Wondu Bekele, Doctors, Representatives of Federal Ministry of Health, Guests, and Children:

It is my honor and my pleasure to be here today sharing this Celebration of Life, an event aimed at increasing awareness of the needs of children diagnosed with cancer, and to show that if we all work together, kids can rise above cancer too.

Like Mr. Wondu, I came to this field of work, or I shall say, to this life commitment, for personal reasons. Having lost my step son Max to leukemia, I understand the anxiety of parents, and i can assert that the loss of a child is a loss to the entire community; for each child that leaves us too soon, is one too many. And I cannot and we cannot be indifferent. None of us can be indifferent. Childhood cancer is treatable with a survival of up to 90 percent in western countries. Further, treating childhood cancer is not expensive. And, in any case, what price can we put on the life of a child?

Cancer is not only a problem of western countries, there is a growing cancer epidemic in emerging countries, but cancer does not have to be a death sentence! You dont need to believe me, you have proof in front of your eyes. Black Lion, Ttikur Anbessa Hospital, runs a very successful program for chronic myeloid leukemia (CML) the same disease which took the life of Max. People in Ethiopia are living with cml for many years and making a great contribution to your society.

The program is called the glivec international patient assistance program, GIPAP, a program by which Novartis, the makers of Glivec, provides the medicine, Ttikur Ambessa Hospital provides the patient care, The Max Foundation provides the program administration, and the patients provide their courage. This experience should be looked at as an example of what is possible when we all work together.
The Max Foundation is committed to call attention to the needs of people living with cancer around the world. We are members and partners of the UICC and provide support to the World Cancer Declaration; and we worked hard towards to political declaration on NCDs ratified by the United Nations a few weeks ago at the High Level Summit.

We are also committed to efforts to engage all stakeholders towards increasing survival of childhood cancer, and are honored to be collaborating with tikur anbessa hospital, with the INCTR, supporting the efforts of Dr. Aziza Shad and Mary Louise Cohen to achieve this goal here in Addis, and with the Mathiwos Wondu-YeEthiopia Cancer Society.

As well, we are committed to increasing access to diagnostics and monitoring for CML and other cancers. As it turns out, the doctors did not have the technology needed to diagnose CML in this country, nor were they able to monitor the progress of the treatment. Treating cml without monitoring the progress of the treatment is the equivalent to performing surgery in the dark. However, the commitment of dr amha and dr abdulaziz inspired many around the world to support the program at Black Lion.  In fact it is my pleasure to announce that two days ago we were able to launch the CML diagnostics and monitoring program in collaboration with Black Lion Hospital, the ethiopian nutrition and heslth research institute, the iCMLf, Cepheid, FIND diagnostics, INCTR, and others. This great success would not have be possible if it weren’t for the dedication and personal commitment of Dr. Amha, Dr. Abdulaziz, Dr. Aster and everyone involved in Ethiopia. Your dedication inspires all of us.

I often think with sadness of Max’s life cut short, and wonder what could have been, what personal contribution he would have made to the world. If Max had been lucky to be born in Ethiopia today, he would have had the chance to fulfill his life.
Ladies and gentlemen, one third of all cancers are preventable, one third are treatable, and together, NGOs, health care providers, government, industry and private individuals, we can address this problem. We are all here in this room, and the time is now to ratify our commitment to improving clinical outcomes for people diagnosed with cancer in Ethiopia, and what better place to start than to start with our children.

October 19th marks the anniversary of the birth of max. To honor his legacy and his memory, every October, in partnership with organizations such as the Mathiwos Wondu-YeEthiopia Cancer Society, we celebrate life around the world. We celebrate in gratitude to one another and take one moment to forget the suffering of our loved ones.
I do not want to take more time, as we have eager children who are ready to celebrate their unique life, so I would like to finish by thanking you all for tireless efforts and for welcoming me to your country.

With thanks,
Pat Garcia-Gonzalez

About The Max Foundation:
The Max Foundation is dedicated to improving the lives and survival rates of patients with blood cancer and rare cancers worldwide. The vision of The Max Foundation is a world in which all cancer patients have access to the best treatments, care, and support available. Through an International Patient Helpline, each year The Max Foundation provides advocacy and support services to over 20,000 families from more than 100 countries. The Max Foundation helps people enroll in patient access programs, identify paths for access to treatment, and advocate on their behalf, all the while caring for their emotional health. www.themaxfoundation.org

June 17, 2011
Contact: Erin Schwartz/ 425‐778‐8660

First Gist Tumor Board Convenes For Latin American Physicians

FOR IMMEDIATE RELEASE

ASCO Event Highlights Medical Issues that Need Attention in Latin America

Chicago, IL--Alianza GIST, in partnership with the Life Raft Group, The Max Foundation, and Tecnológico de Monterrey hosted an event for Latin American physicians on Sunday June 5th at the American Society of Clinical Oncology conference (ASCO). The meeting drew physicians from many countries as they discussed best practices in Latin America for Gastrointestinal Stromal Tumor (GIST) and convened a Tumor Board with case discussions. Panelists included Dr. Matías Chacón, Instituto Alexander Fleming (Buenos Aires, Argentina); Dr. Christopher Corless, Oregon Health and Science University (Portland, Oregon); Dr. Eduardo Guzmán, Tecnológico de Monterrey (Monterrey, Mexico); and Dr. Jonathan Trent, MD Anderson Cancer Center (Houston, Texas).

A presentation was made by Rodrigo Salas, President of Fundación GIST México, about a new CME accredited training course available in Spanish through Tecnológico de Monterrey. The goal is for physicians from across Latin America to take this educational course to improve their knowledge of treating and managing GIST. For more information, visit http://www.fundaciongist.org.

Both Dr. Chacón and Dr. Guzmán presented challenging GIST cases for discussion. Misdiagnosis was one key issue and a lengthy dialogue followed regarding ways to optimize this process. The highlighted case underscored the necessity to work with pathologists that see many GIST patients. Causes and possible solutions for progressive disease were also discussed for another case, with many panelists emphasizing the importance of genotyping as a predictor of how GIST tumors respond to drug therapy. The Life Raft Group is able to provide free mutational testing for GIST patients in Latin America through its GIST Collaborative Tissue Bank program. Please visit: http://www.liferaftgroup.org/TissueBank.html

Cases such as the ones that Dr. Chacón and Dr. Guzmán presented are not rare in Latin America, nor are they in other parts of the world. These problems reach global dimensions and many issues need to be addressed such as:

• Incorrect Diagnosis
• Poor Clinical Trial Availability
• Lack of Mutational Testing
• Poor Access to Safe, Effective, and Affordable Treatment

This forum was an important start to closing the information gap among the medical community and increasing the index of suspicion among those that see GIST patients. The tumor board sets a precedent for establishing a more formal structure of physicians to continue the dialogue about regional and global issues that affect patients in Latin America.

About Alianza GIST:
Alianza GIST was formed in 2009 with the goal to improve the survival of people living with GIST in Latin America. Each year, over 5,000 people in the United States are diagnosed with GIST, a rare form of cancer, for which there is no known cure. Unfortunately, there are no statistics about the incidence of this disease in Latin America; however, research is underway to investigate the rates in the region. At present, the group is comprised of patient advocates from thirteen countries aiming to help close the gap between scientific knowledge and the clinical treatment of GIST, identify and educate more patients and key medical professionals, empower patients to take charge of their own care, and improve access to safe and effective treatments. www.alianzagist.org

About the Life Raft Group:
The Life Raft Group (LRG) is a 501(c)(3) organization with a simple focus: to cure a form of cancer — GIST (gastrointestinal stromal tumors) – and to help those living with it until then. Our mission is to ensure the survival of GIST patients through a comprehensive approach connecting individual patients’ needs, the worldwide community of GIST advocates and the global health and research environment. www.liferaftgroup.org

About The Max Foundation:
The Max Foundation is dedicated to improving the lives and survival rates of patients with blood cancer and rare cancers worldwide. The vision of The Max Foundation is a world in which all cancer patients have access to the best treatments, care, and support available. Through an International Patient Helpline, each year The Max Foundation provides advocacy and support services to over 20,000 families from more than 100 countries. The Max Foundation helps people enroll in patient access programs, identify paths for access to treatment, and advocate on their behalf, all the while caring for their emotional health. www.themaxfoundation.org

About Tecnológico de Monterrey:
Tecnológico de Monterrey (ITESM) is a higher education institution that educates students to become responsible citizens who trigger the development of their communities. ITESM promotes in their students humanistic values, an international perspective, and an entrepreneurial culture. ITESM is present throughout México with 31 campuses and in several other countries through its sites and liaison offices. www.itesm.edu

June 17, 2011
Contact: Erin Schwartz/425-778-8660

Primer Encuentro Convocado Para Médicos De Latinoamérica Sobre Tumor Gist

For Immediate Release

Evento en ASCO; destaca cuestiones médicas que requieren atención en América Latina

Chicago, IL - Alianza GIST, en colaboración con the Life Raft Group, The Max Foundation, y el Tecnológico de Monterrey organizó un evento para médicos de Latinoamérica el domingo 05 de junio, durante la conferencia de la American Society of Clinical Oncology (ASCO). La reunión convocó a médicos de muchos países, que debatieron acerca de las mejores prácticas en América Latina para el tratamiento del Tumor del Estroma Gastrointestinal (GIST), y a un panel que analizó casos clínicos. Los panelistas fueron el Dr. Matías Chacón, del Instituto Alexander Fleming (Buenos Aires, Argentina), el Dr. Christopher Corless, Oregon Health and Science University (Portland, Oregon), el Dr. Eduardo Guzmán, del Tecnológico de Monterrey (Monterrey, México), y el Dr. Jonathan Trent, del MD Anderson Cancer Center (Houston, Texas).

Rodrigo Salas, presidente de la Fundación GIST México, presentó un curso de entrenamiento con acreditación CME, disponible en español a través del Tecnológico de Monterrey. El objetivo es invitar a los médicos de Latinoamérica a que tomen  este curso de educación para ampliar sus conocimientos sobre el tratamiento y el manejo del GIST. Para obtener más información, por favor visitar http://www.fundaciongist.org.

El Dr. Chacón y el Dr. Guzmán presentaron a discusión casos que planteaban un desafío. Un tema clave fue el diagnóstico erróneo, seguido por un extenso diálogo sobre modos para optimizar este proceso. El caso analizado dejó al descubierto la necesidad de trabajar con patólogos que traten a muchos pacientes con GIST.

En otro caso se debatió acerca de las causas y posibles soluciones para la progresión de la enfermedad. Muchos  de los panelistas hicieron hincapié en la importancia de la determinación del genotipo como factor de predicción de la respuesta del GIST a la terapia de drogas. El Life Raft  Group ofrece pruebas de mutación  gratuitas a los pacientes con GIST en América Latina a través de su programa de colaboración GIST Banco de Tejidos. Por favor visite: http://www.liferaftgroup.org/TissueBank.html

Casos como los que presentaron el Dr. Chacón y el Dr. Guzmán no son raros en Latinoamérica, así como tampoco lo son en otras partes del mundo. Estos problemas alcanzan dimensiones globales, y se hace necesario abordar diversos temas tales como:

• Diagnóstico incorrecto
• Escasa disponibilidad de estudios clínicos
• Falta de pruebas de mutación
• Limitado acceso a un tratamiento seguro, eficaz y accesible

Este foro fue un primer paso importante para reducir la brecha de información dentro de la comunidad médica, y aumentar del índice de sospecha de GIST entre quienes reciben pacientes. La idea de convocar un panel sienta un precedente para el establecimiento de una estructura más formal entre los médicos para continuar el diálogo sobre temas regionales y globales que afectan a los pacientes en Latinoamérica.

Acerca de la Alianza GIST:
Alianza GIST se formó en 2009 con el objetivo de mejorar la supervivencia de las personas que viven con GIST en América Latina. Cada año, más de 5.000 personas en los Estados Unidos son diagnosticadas con GIST, una forma rara de cáncer para la cual no hay cura conocida. Desafortunadamente no existen estadísticas sobre la incidencia de esta enfermedad en América Latina, pero ya se está investigando a nivel regional. Actualmente el grupo está compuesto por defensores de pacientes de trece países cuyo objetivo es ayudar a reducir la brecha entre el conocimiento científico y el tratamiento clínico del GIST, identificar y educar a más pacientes y a los principales profesionales de la salud, capacitar a los pacientes para hacerse cargo de su propio cuidado, y mejorar el acceso a tratamientos seguros y eficaces.
www.alianzagist.org

Acerca del Life Raft Group:
El Life Raft Group (LRG) es una organización sin fines de lucro con un enfoque simple: procurar la cura de esta rara forma de cáncer - GIST (tumor del estroma gastrointestinal) - y ayudar a las personas que viven con el mismo hasta que llegue ese momento. Nuestra misión es asegurar la supervivencia de los pacientes con GIST mediante un enfoque integral, conectando las necesidades individuales de los pacientes con la comunidad mundial de defensores de GIST y el ámbito de la salud mundial y la investigación.
www.liferaftgroup.org

Acerca de la Fundación Max:
La Fundación Max se dedica a mejorar las vidas y los índices de supervivencia de los pacientes con cáncer de la sangre y cánceres poco comunes en todo el mundo. La visión de la Fundación Max es un mundo en el que todos los pacientes con cáncer tengan acceso a los mejores tratamientos, atención y apoyo disponibles. A través de una línea internacional de ayuda a pacientes, cada año la Fundación Max proporciona apoyo y servicios a más de 20.000 familias en más de 100 países. La Fundación Max ayuda a las personas a ingresar a programas de acceso a medicamentos e identificar vías de acceso a los tratamientos, abogando en su nombre, siempre cuidando su salud emocional. www.themaxfoundation.org

Acerca del Tecnológico de Monterrey:
El Tecnológico de Monterrey (ITESM) es una institución de educación superior que enseña a los estudiantes a ser ciudadanos responsables capaces de impulsar el desarrollo de sus comunidades. El Tecnológico de Monterrey promueve en sus alumnos los valores humanistas, una perspectiva internacional, y una cultura empresarial. El Tecnológico de Monterrey está presente en todo México con 31 campus y en varios otros países a través de sus sitios y oficinas de enlace.
www.itesm.edu

June 16, 2011
Contact: Erin Schwartz - Erin.Schwartz@Themaxfoundation.Org

The United Nations Civil Society Interactive Hearing On Non Communicable Diseases (Ncds)

Event: Planned address by Pat Garcia-Gonzalez, Executive Director of The Max Foundation, at the United Nations Civil Society Interactive Hearing on Non Communicable Diseases (NCDs)

Location: United Nations (UN), New York City, New York; USA

Timing: Pat’s address is planned for Roundtable One on “The Scale of the Challenge” between 10:45 AM to 12:00 PM, EST.

On behalf of the more than 14,000 cancer survivors, caregivers and supporters who signed the World Cancer Declaration during the Maximize Life Global Cancer Awareness Campaign, as well as people affected by cancer everywhere, Pat is intended to address civil society participants at the interactive hearing on NCDs help at the United Nations. The civil society hearing is in preparation for the High Level UN Summit meeting on September 19th and 20th addressing Non Communicable Diseases, including cancer. Pat’s address will represent the voices of cancer survivors worldwide and include a personal message from a leukemia survivor in South Africa.

Pat’s intended address for June 16th on behalf of blood cancer and rare cancer survivors and their loved ones worldwide follows:

“The Max Foundation has served people diagnosed with cancer in low-and-middle-income countries (LMICs) for the past 15 years. We have witnessed, not only the devastating effects of the diagnosis on families, but also the great impact of the loss of productivity and life on the communities where these individuals live.

Not only are 80 percent of cancer deaths are in low-and-middle-income countries (LMICs), but also evidence shows that the age of onset of most cancers in LMICs is much earlier than in the developed world, taking the lives of children and productive members of society. Without action, the Non Communicable Diseases (NCDs) epidemic will greatly impact the potential of these countries to further develop with dire consequences to the global community.

Today, I bring to you the voices of people diagnosed with leukemia and other rare cancers in LMICs, those who do not have a microphone or a platform, but who care deeply about NCD and cancer control, because their lives depend on it. And while in some cases their disease might not be preventable, their deaths certainly are. That we have so many countries today in which the survival of children with Acute Lymphoblastic Leukemia (ALL), a highly treatable disease, is null, is no less than a crime against humanity.

Evidence also shows that when given the opportunity, cancer survivors become highly productive members of society, with positive economic impact within their communities. I urge you to look at the evidence derived from the survivorship programs that my organization, The Max Foundation, has implemented in the past ten years in LMICs. Facilitation of access to targeted and other novel therapies combined with a concerted effort to develop communities around patients, has resulted in robust support systems, reintegration of survivors to their communities, increased quality of life through volunteerism, a decrease in stigma, higher productivity, and the development of numerous local resources. Through successful partnerships, more than 60 countries have started new civil society associations that look after newly diagnosed patients, clinical outcomes are optimized, and healthcare systems have strengthened.

Distinguished dignitaries, fellow civil society members; all we are asking for today is to be given an opportunity to beat these diseases, to beat cancer, and a chance to do it with dignity. Today our voices are represented in the words of a cancer survivor from South Africa who wished for me to give you his personal message:

"I am a leukemia survivor for 21 years and my brother is in an advance stage with GIST for the last six years. I believe that my brother would not have had to be facing death in the manner he currently is, if we did not have to deal with so much red tape and bureaucracy. For far too long the world has concluded that Africans are dying as a result of wars. Many of our people die as a result of disease, many of which are preventable, treatable and curable. Unless the international community immediately develops a plan to de-stigmatize us, who are victims of the disease cancer, it would be guilty of the same crimes against humanity of which they accused the former South African President Thabo Mbeki when he delayed the implementation of treatment for HIV\AIDS. We, the patients of South Africa and indeed Africa and the world, herewith add our voices to the international patient groups’ voices. We call on the United Nations to take the lead in showing respect for our dignity as persons, and value our quality of life". Trevor C Steyn (South Africa)’”

Thank you,
Pat Garcia-Gonzalez
Executive Director
The Max Foundation

About the Informal interactive hearing:

In accordance with the request of the UN General Assembly, the President of the General Assembly Mr. Joseph Deiss is organizing an informal interactive hearing on 16 June in New York with non-governmental organizations, civil society organizations, the private sector and academia. The outcomes of the hearing will provide an input to the preparatory process for the high-level meeting of the General Assembly on the prevention and control of non-communicable diseases (NCDs) shall be held on 19-20 September 2011 in New York. For more information visit: http://www.who.int/nmh/events/2011/informal_hearing/en/index.html 

January 25, 2011
Contact: Erin Schwartz- Info@Themaxfoundation.Org

Media Release- The Max Foundation Participates In World Cancer Day

The Max Foundation celebrates World Cancer Day by handing over to the leadership of UICC 12,000 signatures endorsing the World Cancer Declaration 

Location: Geneva, Switzerland

Date: February 4, 2011, World Cancer Day

Executive Director, Pat Garcia-Gonzalez, along with a delegation of patient leaders, cancer survivors and caregivers from low-to-middle-income countries, will present 12,000 World Cancer Declaration signatures to the leaders of the Union for International Cancer Control (UICC) in honor of World Cancer Day. The signatures, which were collected during the 2010 Maximize Life Global Cancer Awareness Campaign, represent 86 countries and exemplify the positive impact of access to treatment not only on the individual patient and their family, but also on the entire community.

The delegation handing over the signatures includes Rod Padua, the president of a cancer patient organization in the Philippines, whose 13 year old son is a leukemia survivor; Maria Isabel Gomez de Soriano, the president of a patient association in Venezuela, herself a leukemia survivor; Viji Venkatesh, a leader in cancer care for over 20 years Head of The Max Foundation’s office in Mumbai, India, and Javier Silva Barragan, an advocate from Mexico, a survivor who collected more than 800 signatures to the declaration.  The date of the actual signature handover has significance to the delegate from Mexico. Javier shares, “February 5th is the most important day of my life; in 2000 on the very same date; I received a Bone Marrow Transplant. And thanks to God, to the great work of the physicians in Guadalajara, and with the help of my wife; I now have a good quality of life. This is why I like to collaborate with my community.”

“The 2010 Global Cancer Awareness Campaign was taken to the next level with the addition of the World Cancer Declaration signature drive,” says Executive Director, Pat Garcia-Gonzalez, “This campaign has given voice to the unheard, those who do not have a global platform or microphone, yet those who care about cancer control because their lives and the lives of their loved ones depend having access to treatment and support.”

The Maximize Life Global Cancer Awareness Campaign, carried out in partnership with over 30 patient associations from around the world, aimed at raising awareness of the needs of cancer patients in low and middle income countries. Lack of cancer control plans often result in high mortality rates. While cancer is on the rise worldwide, 70 percent of all cancer deaths are in developing countries.

Watch the 2010 Maximize Life video on You Tube!

Global partners in the campaign:
International Union Against Cancer (UICC), Switzerland • Asociacion de Leucemia Mieloide Argentina, Argentina • Asociacion MaxiVida Chile, Chile • Asociación de Lucha Contra la Leucemia, Bolivia • Asociación Ecuatoriana de Ayuda a Pacientes con Cancer Esperanza y Vida, Ecuador • ASAPHE, Venezuela • Fundacion Esperanza Viva, Colombia • Asociacion Amor a la Vida, El Salvador • ASOPALEU; Una Voz Contra el Cancer, Guatemala • Asociacion Hondurena de Lucha contra el cancer, Honduras • Asociacion Alas de Vida, Nicaragua • AMELEG, México • ADVITA; Nastenka; Sodeystvie, Russia • Friends of Max Azerbaijan, Azerbaijan • Association of CML Patient, Uzbekistan • Touched by Max, Philippines • MaxFamily Society of Malaysia, Malaysia • MaxSmiles, Thailand • Max's Vie, Vietnam • Friends of Max; India Trust, India • Kiran, Pakistan • CML Home of Hope, China • Henzo Kenya, Kenya • CML Ethiopia Foundation, Ethiopia • Leukemia Foundation, Mauritius • SOCHIMIO, Cameroon • ASUL, Uruguay • APSBES-ONG, Togo • Charitable Society for patients with blood cancer (CML –GIST), Sudan • Crusader Club Ministry Palliative care, Sierra Leone

About The Max Foundation:

The Max Foundation is a US-based international non-profit dedicated to improving the lives of people living with blood cancer and rare cancers worldwide. The organization focuses attention on assisting disadvantaged populations in developing countries and elsewhere, including the US.

Contact:

Erin Schwartz
Head of Patient Services, The Max Foundation
info@themaxfoundation.org

The Max Foundation
www.themaxfoundation.org

November 29, 2010
Contact: Erin Schwartz - Info@Themaxfoundation.Org

Ash Annual Meeting, Orlando - 4Th December 2010

The iCMLf and The Max Foundation Launch new Virtual Education Program for Physicians from Emerging Regions

On 4 December 2010 the International Chronic Myeloid Leukemia Foundation (iCMLf) in partnership with The Max Foundation will launch the iCMLf Virtual Education Program for clinicians from emerging regions. In this innovative format, leading haematologists provide e-learning tutorials about best practices for the management of patients with Chronic Myeloid Leukemia (CML), taking into consideration the specific challenges in these regions. This program progresses the iCMLf's mission to improve the outcomes for patients with CML globally.

The iCMLf Virtual Education Program will be launched at a networking meeting for clinicians from emerging regions during the Annual Meeting of the American Society of Hematology (ASH) on 4 Dec 2010 from 11:00-12:30 pm at the Rosen Shingle Creek Hotel.

”With the availability of new targeted treatments, survival of patients with CML has improved dramatically over the past years. However, improved survival in CML is directly attributable to careful management of these patients according to established guidelines. Clinicians in emerging economic regions may not have easy access to updated knowledge regarding best practice for CML patients. This is why the iCMLf now provides the Virtual Education Program to support health professionals in these countries and beyond", said Professor John Goldman, Chairman of the Board of the iCMLf.

The Virtual Education Program offers a series of webcast presentations on the practical aspects of CML management. Innovative e-learning tutorials are provided as interactive webcasts on the iCMLf website as well as on USB flash drives for offline use. Leading hematologists Prof John Goldman (London, UK), Prof Timothy Hughes (Adelaide, Australia), Prof Jorge Cortes (Houston, USA) and Prof Michele Baccarani (Bologna, Italy) provide lectures with updated information on treatment advances, including disease monitoring and new therapies. The presentations consider the specific challenges for clinicians in emerging economic countries.

"The Max Foundation supports people living with CML worldwide,” says Pat Garcia-Gonzalez, Executive Director of The Max Foundation, “and our regional teams work closely with clinicians and CML survivors in low to middle income countries. Pat continues, “We know how challenging it can be to access appropriate monitoring, treatment and care. We believe the iCMLf Virtual Education Program is a key initiative in sharing best practices within emerging regions and around the world so people can get the best care no matter where they live."

The Virtual Education Program is part of the iCMLf's Emerging Regions Support and Partnership (ERSAP) program that was launched at the ASH annual meeting in 2009. The first ERSAP program, the ERSAP Preceptorship Program, provides training, education and support for up to 30 hematologists from emerging regions each year, providing one-on-one tuition and practical experience at nine internationally renowned centers of excellence. Reports from the clinicians attending the program in 2010 have rated the program as exceptionally worthwhile and beneficial to both the clinicians and their patients.

The iCMLf newsletters containing reports about its current programs is available for download at www.cml-foundation.org/newsletters/, the iCMLf Virtual Education Program at cml-foundation.org/vep

About the International Chronic Myeloid Leukemia Foundation (iCMLf)

The iCMLf is a charitable foundation established in 2009 by a group of leading hematologists with a strong interest in CML. The mission of the iCMLf is to improve the outcomes for patients with CML by fostering and coordinating global clinical and research collaborations and therefore improving clinical practice and disease monitoring in CML around the world. The launch of the Emerging Regions Support and Partnership Program (ERSAP) preceptorship program, supporting and educating clinicians in 2010 was the first step on the journey to achieve this goal, which is now further supported with the Virtual Education Program.

About The Max Foundation

The Max Foundation is a US-based international non-profit dedicated to improving the lives of people living with blood cancer and rare cancers worldwide. The organization focuses attention on assisting disadvantaged populations in developing countries and elsewhere, including the US. The Max Foundation's International Patient Helpline provides free services of advocacy, emotional support, and informational referrals. Through a highly dedicated team of US-based and local advocates based in targeted countries, families receive personalized support services. Each year The Max Foundation provides free services to over 16,000 families in more than 100 countries.

Contacts

iCMLf - International Chronic Myeloid Leukemia Foundation
http://www.cml-foundation.org
Nicola Evans
iCMLf Emerging Regions Support and Partnership Program (ERSAP) Director
nicola.evans@cml-foundation.org
Mobile +61 40699 5409

Jan Geissler
iCMLf Communications Manager
jan.geissler@cml-foundation.org
Mobile +49 173 2757146

The Max Foundation
www.themaxfoundation.org
Erin Schwartz
Head of Patient Services, The Max Foundation
info@themaxfoundation.org

October 01, 2010
Contact: Erin Schwartz 425-778-8660

Maximize Life Global Cancer Awareness Campaign Launches, October 2010

Seattle, Washington. – Pat Garcia-Gonzalez, Executive Director of The Max Foundation announces the launch of the 2010 Maximize Life Global Cancer Awareness Campaign, an initiative aimed at increasing public awareness of the needs of people diagnosed with cancer in low and middle income countries. The initiative calls for national governments, international organizations, and the general public, to increase resources allocated to cancer prevention and treatment in these countries.

When we focus on low and middle income countries, we usually think that cancer is not a problem; yet, cancer kills more people than malaria, TB and HIV/AIDs combined", said Pat Garcia-Gonzalez. "Cancer diagnoses are on the rise in low and middle income countries. Fifty percent of all cancer diagnoses, and 70 percent of all cancer deaths are in developing countries, yet only five percent of all global resources are allocated in developing countries. There is a looming cancer epidemic with potentially devastating consequences unless we take corrective action.

Throughout the month of October, The Max Foundation, in partnership with local patient associations will organize public awareness events in more than 30 countries from all regions of the world. A central theme of these events will be the collection of signatures in support of the World Cancer Declaration on the Maximize Life Tribute Wall, including public support messages to people diagnosed with cancer.

In her remarks, Pat Garcia-Gonzalez stressed that two thirds of all cancers are either preventable or treatable, and that with access to diagnostics, treatment and education, people can live productive lives after diagnosis. Local patient associations can play a key role in advancing the cause in their own countries, as well as providing support to newly diagnosed patients.

To join the campaign, write to info@themaxfoundation.org