2015 maximize life - themaxfoundation.org and conclusion ... and provided overwhelmingly positive...

2015 Maximize Life Global Cancer Awareness Campaign

Executive Report

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Table of Contents

Executive summary………………………………………………………………………………………………..3

Background……………………………………………………………………………………………………………4

Campaign goals……………………………………………………………………………………………………..5

2015 Maximize Life Campaign Events…………………………………………………………………….6

Event statistics…………………………………………………………………………………………….8

Volunteer feedback……………………………….…………………………………………………….8

Snapshots of Campaign Events…………….…………………………………………………...13

“I am Maximo. I am an advocate.” Essay Contest…………………………………………………..17

Quotes from submitted essays…………………………………………………………………..18

Challenges and conclusion…………………………………………………………………………………….19

Appendix A: Event Evaluation Form………………………………………………………………………20

Appendix B: Participant Survey……………………………………………………………………………..22

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Executive summary

The Maximize Life Global Cancer Awareness Campaign is an annual initiative of The Max Foundation

featuring a series of events hosted by partners of the Max Global Network around the world

geared toward creating open dialogue around the cancer experience. Talking openly about cancer

is critical to increasing hope for people impacted by a diagnosis and growing awareness about the

needs of people living with cancer worldwide. The Maximize Life Global Cancer Awareness Campaign

is about spreading this message, and the core component of each events is the sharing of

personal stories related to the cancer experience among

survivors and caregivers. Book readings of Maximo and the Big C,

a storybook about finding strength in the face of adversity, were

also used as a tool for discussing the cancer experience at many

of the events.

A total of 48 campaign events were held by 39 patient

organizations in 33 countries around the world. All events

featured a local cancer survivor who spoke out about his or her

experience, and included other activities such as stage plays,

book readings, disease education workshops, forums and peer

support groups. An estimated 11,000 people participated along with 1,050 volunteers. A total of

2,200 Maximo and the Big C books were donated.

Partner organizations that hosted events and event volunteers were surveyed about their

experiences, and provided overwhelmingly positive responses. Feedback from the surveys

indicate that the campaign events led to increased awareness about cancer, an increased sense of

hope among survivors and caregivers who attended, and an increase in community

understanding of the needs of people living with cancer.

In addition to the awareness events, Maximize Life Global Cancer Awareness Campaign also featured

the “I am Maximo. I am an advocate.” Essay Contest. The contest solicited essays from caregivers

and survivors from around the world in English, Spanish and French. One winner was selected

from each language group by a panel of independent judges and awarded an individual prize of

US$300 as well as a US$500 prize to be donated to a partner of the Max Global Network of their

choice. A total of 71 essays were submitted from Latin America, Asia, Africa and the Middle East

and are featured at: http://maximizelife.themaxfoundation.org/.

These inspiring essays served to further elevate the conversation around the cancer experience

and have served as a source of inspiration for cancer survivors and caregivers worldwide.

“Our event was very

touching because people

could see that patients with

chronic disease can live a

normal life with good

treatment and medical

supervision.”

~Survivor, Ecuador

http://maximizelife.themaxfoundation.org/

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Background

Cancer incidence is rising sharply worldwide, and the majority of the cancer burden weighs on

lower- and middle-income countries where few resources are allocated to chronic disease

management and treatment. In addition, cancer is heavily stigmatized in many countries and

there are many beliefs, biases and misconceptions around those living with cancer. This leads

those with cancer to avoid seeking a diagnosis or treatment, and creates an environment where

they are receiving little support from their communities.

The purpose of the Maximize Life Global Cancer Awareness Campaign is to target these problems by

raising awareness and building community support for people living with cancer in lower- and

middle-income countries. In doing so, our aim is to call for cancer treatment to be made a political

and social priority. To carry out a successful campaign, The Max Foundation relies on its

partnership with patient associations around the world who host the local community events.

The first Maximize Life Global Cancer Awareness Campaign took place in October 2010 and has

continued to evolve each year. In 2013, with the launch of the Maximo and the Big C book, the

Maximize Life Campaign utilized the book as a vehicle for breaking down fear and stigma and

building dialogue around cancer within communities. In 2014, the “I am Maximo, I am and

Advocate.” Essay Contest was first introduced, further encouraging advocates to speak out about

their cancer experience.

For the 2015 campaign, advocates, volunteers and partner organizations were encouraged to

develop events aimed at encouraging survivors to speak out and tell their story. The Max

Foundation provided grants to fund the events; a key requirement was for a local cancer survivor

to share their story at the event. A request for proposal (RFP) process was carried out, soliciting

proposals from partner organizations interested in hosting local events related to the theme.

Successful grantees benefited from financial, logistical and in-kind donation support from The

Max Foundation. They also received publicity and exposure on The Max Foundation’s website and

social media accounts before, during and after the campaign.

In addition to the campaign events, The Max Foundation hosted the “I am Maximo. I am an

advocate.” Essay Contest for a second year. Building upon the success of the contest in 2014, in

2015 the campaign expanded the “I am Maximo. I am an advocate.” Essay Contest platform to be

open to French and Spanish speakers in addition to English. As a result, essay submissions

increased from 21 in 2014 to 71 in 2015.

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Campaign goals

The goals of the Maximize Life Campaign remain constant from year to year. These goals are to:

decrease the feeling of isolation and increase hope for survivors and caregivers who

participate in campaign events

increase local community awareness and support for people living with cancer

Beyond encouraging open dialogue about the cancer experience, the campaign also focus on

encouraging volunteerism as a form of community engagement that helps to further spread

compassion and awareness about the needs of cancer patients. In measuring the success of the

campaign, we emphasized the recruitment and inclusion of volunteers and surveyed many of the

volunteers at events.

Progress toward achieving the campaign goals was measured through those volunteer surveys, as

well as feedback forms from partner organizations that hosted events and the tracking of

campaign activities and statistics.

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2015 Maximize Life Campaign Events

LATIN AMERICA

Argentina - ALMA

Chile – Corporación Nacional Maxi Vida Chile

Colombia – Fundación Colombiana de Leucemia y Linfoma

Dominican Republic – Un Paso Max

Ecuador – Asociación Ecuatoriana de Ayuda a Pacientes con Cáncer - "Esperanza y Vida"

Guatemala – ASOPALEU

Honduras – AHLCANCER

Mexico – Grupo Unido de Leucemia, AC

Mexico – Manitas la Pulsera de Leucemia

Nicaragua – Fundación Alas de Vida

Peru – Esperantra

Peru – Luz de Esperanza

AFRICA AND THE MIDDLE EAST

Burkina Faso – Groupe d'Appui aux Survivants du Cancer

Egypt – CanSurvive

Countries that hosted at least one campaign awareness event.

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Ghana - CMLAG

Kenya – Childhood Cancer Initiative

Kenya – Henzo Kenya

Kenya – Nakuru Hospice

Mali – Association Leucémie, espoir Mali

Morocco – Association des Malades Atteints de Leucémies (AMAL)

Niger – Association de Lutte Contre la Leucémie

Palestine – Patient’s Friends Society-Jerusalem

Sierra Leone – Crusaders Club Ministry

South Africa – CMLSA

South Africa – CHOC

South Africa – Cancer Buddies

Togo – NGO APSBES / Diligence Group

Uganda – Leukemia & GIST Advocacy Fraternity of Uganda (LGAFU)

ASIA

Bangladesh – Bangladesh CML Supporting Group

China – Shanghai Roots & Shoots

India – Friends of Max

Malaysia – Max Family Society Malaysia

Nepal – Blood Cancer Society Nepal

Philippines – Touched by Max

Thailand – MaxSmiles

Uzbekistan – Association of Patients with CML Uzbekistan

Vietnam – Max’s Vie

Europe

Georgia – The Alliance of CML patients of Georgia

Slovenia - L&L Slovenia

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Event statistics

This year’s campaign featured 48 events in 33 countries. These events were held by a total of 39

patient organizations around the world.

FIGURE 1

Local events were funded with monetary grants from The Max Foundation. In addition, copies of

Maximo and the Big C were donated and distributed to many of the groups to read and donate to

those who attended their events. A total of 2,200 books were donated in six languages.

Volunteer Feedback

Volunteers were an important part of the 2015 campaign. They helped with the planning and

execution of the events, shared their stories, and provided support to participants. We wanted to

know more about who they were and how the Maximize Life Campaign impacted them, so we

asked each volunteer to complete a survey about their experience.

An estimated 11,000 people were involved in these events along with 1,050 volunteers. Volunteers

were surveyed following campaign events, to assess the impact of participating in the events. A

total of 98 evaluations were completed and submitted, 78 were completed by survivors or

caregivers, and 20 were completed by community members.

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19

13

2

0

2

4

6

8

10

12

14

16

18

20

Latin America Africa & Middle East Asia Europe

Number of Events by Region

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Event volunteers ranged in age from 7 to 78, with a median age of 31. Of the volunteers who

completed the survey, 48% of them were survivors, 32% were caregivers and 20% were

community members. Additionally, for 32% of the volunteers that responded to the survey (n=98)

this was their first time at a Maximize Life Campaign event. Increasing the number of new people

we reach each year is critical to the growth of the Maximize Life movement.

The number of patient associations involved in the campaign increased from 36 in 2014 to 39 in

2015, however, the number of volunteers engaged in the campaign remained roughly the same

with 1,052 total volunteers in 2014 and 1050 total volunteers in 2015. In 2015, an average of 22

volunteers were present at each event (48 events were held in total).

Survey respondents were asked whether they were a survivor, caregiver or a community member.

Survivors and caregivers answered one set of three questions while community members

answered another set of three questions. Each survey question was linked to the campaign goals

of (1) decreasing the feeling of isolation and increasing the hope of survivors and caregivers who

participate in campaign events, and (2) increasing local community awareness of people living with

cancer in low- and middle-income countries.

A sample participant survey is available in Appendix B in this report.

48%

32%

20%

Volunteer survey question:"Are you a survivor, a caregiver, or a community

member?"

Survivor Caregiver Community Member

FIGURE 2

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The questions and results for survivors and caregivers can be found in Figures 2-5. Note

that these statistics represent data from the survey respondents (n=78 respondents):

5% 5%

39%

51%

"After participating in this event, I feel less isolated from others."

90% said "agree" or "strongly agree"

Strongly disagree

Disagree

Neither agree nor disagree

Agree

Strongly agree

1%

38%

58%

"After participating in this event, I feel more comfortable talking with a friend or family member about my or my loved one's

diagnosis."


Strongly disagree

Disagree


Agree

Strongly agree

FIGURE 3

FIGURE 4

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The questions and results for community members who responded to the survey (n=20) are

found in Figures 6-8:

4%

45%

51%

"After participating in this event, I feel a sense of hope for myself and other cancer survivors/caregivers."


Strongly disagree

Disagree


Agree

Strongly agree

0%

5%

60%

35%

"After participating in this event, I learned how cancer impacts my community."


Strongly disagree

Disagree


Agree

Strongly agree

FIGURE 5

FIGURE 6

12

5%

52%

43%

"After participating in this event, I feel comfortable talking about cancer with other people."


Strongly disagree

Disagree


Agree

Strongly agree

5%

57%

38%

"After this event, I have a better understanding of how to support people living with cancer."


Strongly disagree

Disagree


Agree

Strongly agree

FIGURE 7

FIGURE 8

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Snapshots from the Awareness Events:

Many types of events were proposed and held in this year’s Maximize Life Campaign, with the one

requirement that each event had to feature a local cancer survivor who spoke out about their

experience living with cancer. Feedback received from the partner feedback forms provided

highlights of the events, some of which are illustrated in this section. Common themes that

emerged were survivors being empowered to share their stories for the first time, participants

emerging from events with a greater sense of hope for living a fulfilling life in the face of a cancer

diagnosis and participants feeling as though they were able to use the events as a platform for

their voice to be heard in their community.

In Morocco, Max Global Network partner, Association des Malades Atteints de Leucémies (AMAL),

hosted multiple events that involved awareness walks and seminars with patients and physicians

in the hillside communities of the country. The following is a comment received in the feedback

survey from AMAL:

“The most meaningful story of this year is the participation of a new member in AMAL Association. She

is a CML patient and a teacher, and she couldn’t speak up about her disease before. But after she

attended our training that is dedicated for facilitators of this campaign, she was touched by the courage

of Maximo and decided to take this initiative and share her story and Maximo’s story with her own

students. It was such a great experience for her and a great success for us.”

Students enjoying Maximo and the Big Cat a campaign event in rural Morocco.

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A survivor shares about the value of sharing encouraging words at Nakuru Hospice’s event in

Kenya:

“The event increased our hope because those who spoke mentioned areas to strengthen to prevent,

treat and manage cancer. One Government official said ‘Today in Kenya cancer is killing more people

than HIV, Malaria and TB combined’. The impact of cancer should not to be taken lightly. We shall do all

we can to help our community, support institutions that give hope to our patients and families…’’.

A patient organization leader from our Max Global Network partner in Mexico, Manitas la Pulsera

de Leucemia address the importance sharing cancer stories and the value of engaging volunteers

in the Maximize Life Global Cancer Awareness Campaign in order to spread greater understanding

about the needs of patients living with cancer in their community:

“When the president of the organization told her own story as a cancer survivor, the participants could

not believe that someone like them could do something to help. By the middle of her story one of the

mothers began to cry and others’ eyes began to fill with tears, because for first time someone was

describing to them what they really felt, very lonely and misunderstood... Volunteers got involved with

the patients and understood the importance of doing something for someone else. Sometimes you can’t

understand what a patient or a caregiver feels until you spend time with them…”

Survivors, caregivers and community members at a Maximize Life Campaign awareness event in Togo.

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Max Global Network partner Max Family from Malaysia describes the power of involving the

community in the event with survivors and caregivers at the Maximize Life Global Cancer

Awareness Event:

“We feel the event inspired hope among the cancer survivors. As this is our first public event, we can tell

the survivors touched by the support received from the public attending our event. They confidently

shared their journeys with the public. The event also enabled the public to meet with the cancer

survivors more closely. We could see the faces of patients lightened up when greeting public at the venue

entrance. This event definitely bridge the gap between public and cancer survivors, which in turn is the

source of moral support for them. Based on the feedbacks from survivors, they found meeting and

interacting with public indeed was memorable for them. In addition, there were several young patients

spotted approaching the members of Max Family for advice. The journey braving cancer is never a

lonely one, the start of new relationship gives hope to these young patients. They will be inspired by the

amazing long time survivors, and hopefully the relationship built that day will help to empower them in

any ways…”

Patient organization leaders of Max Family, Malaysia, at their 2015 campaign event.

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A participant at the event hosted by our Max Global Network partner in Chile, Corporación

Nacional Maxi Vida Chile, describes how the story of Maximo and their awareness event inspired

participants to be strong in the face of cancer:

“[At the event] a theater presentation was made for Maximo and the big C storybook. A copy of the book

was given as a gift for all children. At the end of the play, several family members shared their

impressions and thoughts about their child’s treatment and the importance of keeping their strength

day by day. They told us about their own struggle with cancer and the importance of fighting it, also,

they highlighted the importance of overcoming adversities and obstacles. [Our Maximize Life

Campaign Event] was a moment for support, and the delivery of a message of hope for children and

their families, who definitely will act as spokespeople for the whole community. Education in overcoming

illness and helping others is a powerful force that motivates people to share the message, not only for

cancer patients and families, but for society as a whole…”

Courageous young cancer survivors after a reading of Maximo and the Big C at an event in Chile.

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“I am Maximo. I am an advocate.” Essay Contest

For the second year in a row, The Max Foundation organized the “I am Maximo. I am an advocate.”

Essay Contest to provide individuals affected by cancer with the opportunity to share their

inspirational stories and become advocates for themselves and others. Building upon the success

of the contest in 2014, in 2015 the campaign expanded the Essay Contest platform to be open to

French and Spanish speakers in addition to English. As a result, essay submissions increased from

21 in 2014 to 71 in 2015. Broken down by language: 6 essays were submitted in French, 31 essays

were submitted in Spanish and 34 essays were submitted in English.

The theme of the essay contest, “I am Maximo. I am an advocate.” encouraged participants to

share a personal story related to their cancer journey that illustrated the way in which they were

able to find strength and hope in the face of adversity, similar to the character of Maximo in the

story Maximo and the Big C. This book, produced by The Max Foundation, tells the story of

Maximo, a little sparrow who is weaker and smaller than the other sparrows in his forest, but finds

strength he did not know he had when he rescues a smaller bird in need. Through this experience,

Maximo realizes that he had the strength to overcome his own challenges all along.

One winner from each language group was selected by an esteemed panel of independent judges.

Each of the three winners received a prize of US$300 and a US$500 award to be donated to the

Max Global Network partner organization of the winners’ choice.

2015 Essay Contest Judges:

Tracey Higgins, Board Member, The Max Foundation

Francesca Holme, PATH

Gladys T. Kenfack, Balafun LLC

Penny LeGate, LeGate Productions LLC

Gilberto Lopez, Oncoclinicas Group

Laëticia Nkinsi, Bellevue College

Dr. Luke M. Nkinsi, Independent Consultant

Olga Sala-Torra, Fred Hutchinson Cancer Research Center

Kristen Tetteh, Washington Global Health Alliance

Dr. Julie Torode, Union for International Cancer Control

2015 Essay Contest winners:

English Category Winner: P. Sangeetha, Caregiver from India

Spanish Category Winner: Jozina Pacheco Gómez, Survivor from Perú

French Category Winner: Saliou Diop, Survivor from Senegal

To read the complete 2015 essay collection and view to view the judges’ and winners’ bios, visit:

http://maximizelife.themaxfoundation.org/.


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Select quotes from submitted essays

“Cancer is a battle that family and friends need to be fighting together!” ~Caregiver, Philippines

“The basic need of any cancer patient is emotional support and encouragement.” ~Caregiver, India

“When I share my 16 years experiences with CML I can see rays of happiness in their (patients) faces.

~Survivor, Nepal

“I'm not foolish enough to be thankful for cancer, but I am thankful for some of the lessons it has taught

me…” ~Survivor, India

“People touched by cancer desperately need our support and strength…” ~Survivor, Bangladesh

“Cancer has no place in our society today we will win the fight…” ~Survivor, Kenya

“I started to believe that there are lives in each of us, a hero awaiting for a call to action, and my call

was the Big C.” ~Caregiver, Morocco

“Si tuviera que decir qué aprendí de esta experiencia, diría que anteriormente no había disfrutado del

todo de la vida." ~Survivor, Argentina

"Mi consejo es que sean conscientes de lo que les está pasando y tengan la fuerza de voluntad para

tomar la medicación.” ~Survivor, Argentina

“A tous ceux qui sont dans le combat contre la leucémie myéloïde chronique, je tiens à leur dire

COURAGE et LEUR APPORTER mon soutient..” ~Survivor, Senegal

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Challenges and Conclusion

The 2015 Maximize Life Global Cancer Awareness Campaign overall was very successful at engaging

Max Global Network partners in hosting awareness events and encouraging their members to

speak out about their cancer experience. Not only was this our biggest year in terms of the

number of partners that participated, but it was also our most successful year at collecting

powerful personal stories from patients and caregivers who participated in the “I am Maximo. I am

an Advocate.” Essay Contest.

Despite these successes, in 2015 we experienced three significant challenges. The first challenge

related to data collection at campaign events. Logistically, it was difficult to solicit and translate the

surveys from groups and survey responses were not feasible with participants who were not

literate or spoke a language that we were unable to translate. While we were successful at

gathering some data through surveys of volunteers and partner organization leaders, we continue

to find it difficult to effectively survey all volunteers and participants at the events. This is largely

because the events tend to be very hectic and partner organization leaders have found it very

difficult to prioritize the surveys. In 2016 we hope to develop a more effective and efficient system

for gathering participant feedback, as such data is critical to insuring that we continue to meet the

goals of the campaign and add value to the initiative.

The second challenge relates to effectively marketing the essays that were submitted to the 2015

“I am Maximo. I am an Advocate.” Essay Contest. While the essays are currently displayed online at

http://maximizelife.themaxfoundation.org/, and they were promoted via social media during the

2015 campaign and for World Cancer Day on February 4th, 2016, the richness of these stories

make them deserving of a higher platform. In 2016 The Max Foundation hopes to identify

additional ways to feature these essays and utilize them as a tool for advocacy and awareness.

Finally, limited funding for the Maximize Life Campaign continues to impose challenges for the

growth of the initiative. Identifying additional sources of funding will be critical for the future

growth and success of the campaign.

Overall, the 2015 Maximize Life Campaign continues to be an initiative that is highly valued by

partners of the Max Global Network as mechanism for spreading awareness about the needs of

people living cancer and encouraging survivors and caregivers to speak out boldly about their

experiences and needs.


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Appendix A: Event Evaluation (completed by partner organization)

Patient Group name: Click here to enter text.

Patient Group city/country: Click here to enter text.

Contact person: Click here to enter text.

Contact email: Click here to enter text.

Event name(s): Click here to enter text.

Event date(s): Click here to enter text.

Number of people who attended

each event:

Click here to enter text.

Number of volunteers who

participated in each event:


Number of books distributed at each

event:


Please share an overview of how the

speaker at your event shared their

personal story:


Please share a specific moment or

story from your event that stood out

to you as being meaningful. (We may

request permission to highlight your

testimonial on The Max Foundation

website or in promotional material)


**Please enclose electronic copies of at least 5 photos from your event(s) that The Max

Foundation has permission to use in promotional materials.

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Appendix B: Participant Survey (completed by volunteers and

participants at events)

Thank you for participating in the 2015 Maximize Life Campaign! Please complete

the following survey to help us learn more about how well the campaign is meeting

its goals.

If you are a survivor/caregiver, please answer the questions on this page. If you are

a community member, please answer questions on the next page.

For survivors and caregivers (please circle one):

1. Are you a:

Survivor Caregiver

2. Is this your first time participating in a Maximize Life Campaign event?

Yes No

3. After participating in this event, I feel more comfortable talking with a friend or family

member about my/my loved one’s cancer diagnosis.

Strongly disagree Disagree Neither agree nor disagree Agree Strongly agree

4. After participating in this event, I feel less isolated from others.


5. After participating in this event, I feel a sense of hope for myself and other cancer

survivors/caregivers.


6. On the back of this page, describe a memorable moment from the event:

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Appendix B continued

For community members (please circle one):

1. 2. Is this your first time volunteering for a Maximize Life Campaign event?

Yes No

2. After participating in this event, I learned how cancer impacts my community.


3. After participating in this event, I feel comfortable talking about cancer with other

people.


4. After participating in this event, I have a better understanding of how to support

people living with cancer in my community.


5. Describe a memorable moment from the event:

2015 maximize life - themaxfoundation.org and conclusion ... and provided overwhelmingly positive...

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