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What’s inside:• Comics• Activities• Art contest• And more!

Newsletter

Issue No. 1

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Table of contents

Hello from the Editor ................................................................................... 2

Intro to the Iron Warriors program ............................................................. 3

Meet a real Iron Warrior: George Constantinou ......................................... 4

Keep a healthy and happy heart .................................................................. 7

Follow the Iron Warriors adventure ............................................................. 8

Activities: Help the Iron Warriors get to their spaceship ............................ 17

Complete the word puzzle ......................................................... 18

Test your memory ....................................................................... 19

Learn with the Iron Warriors ...................................................... 20

Colour in the Iron Warriors ........................................................ 21

Enter the Iron Warriors art contest ............................................................... 22

See past art contest entries ........................................................................... 24

Check the solutions to the activities ........................................................... 25

Join the Iron Warriors Club .......................................................................... 26

What is the Iron Warriors Club?

The Iron Warriors Club was created especially for children with thalassaemia.

The Iron Warriors program is supported by ApoPharma Inc.

It all began when Gina Cioffi, a patient advocate living in the United States, developed

the Iron Warriors art contest, an activity book and other programs to pay tribute to and

unite people with thalassaemia around the globe.

Hundreds of children with thalassaemia from around the world now enter the Iron

Warriors art contest. Children of all ages submit artwork in their local region, and the top

picks in each age category are sent to ApoPharma Inc. for judging. The winning artwork

is printed in a yearly calendar sent out on International Thalassaemia Day, May 8th.

(See page 22 for details on how to enter!)

Today, the Iron Warriors Club is bigger and better than ever! Join today! We will send you a

welcome package filled with fun and educational items, regular Iron Warriors Newsletters

and other great Iron Warriors stuff! To join, turn to page 26.

Hello from the Editor Hi! My name is Romaine and I am the mother of a girl with thalassaemia major.

I am delighted to be the editor of the first issue of the Iron Warriors Newsletter. Our goal is to provide you with support and information as well as some fun activities and games as you live life with thalassaemia.

We would also like to provide you with inspiration. As for many of you, life for my family has been a roller coaster ride. We recognise, though, that we have been extremely fortunate, because over the years we have met people who gave us the inspiration and hope to continue through the tougher moments.

My column in each issue will, therefore, celebrate some of those people who not only overcame their treatment challenges but managed to excel in spite of all the obstacles they faced. I hope that their stories will give you the inspiration and determination to face your own challenges.

For this first issue I selected Mr George Constantinou, who more than deserves to be celebrated for his determination and fight.

My daughter and I met George at a thalassaemia conference in Cyprus some years ago. We were particularly impressed because, even though he was one of the most successful and busy patients there, he took the time to speak to us personally and offer words of advice and encouragement. During a recent meeting in Lisbon, George continued to amaze me by being the life of the gathering, dancing on the streets to the lively music. We hope you enjoy his story – and our first issue!

Sincerely, Romaine

2 Front cover illustration by Ana Paula Aroma, 2008 Iron Warriors art contest winner

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George Constantinou was born in Cyprus, the youngest of four children.

At around six months of age he was diagnosed with a chronic blood

disorder. His parents were told to concentrate on taking care of their

three healthy sons, because no one expected George to live very long.

Determined to beat the grim predictions, George’s father visited

specialists in Greece and London. After receiving similar advice from

everyone, he returned to Cyprus sad and discouraged, but determined

to persevere and help his son.

The breakthrough came during a conversation with a friend whose

daughter had symptoms similar to George’s. George’s family was referred

to Dr Guido Fanconi in Switzerland who diagnosed George with

thalassaemia anemia. The following day, George’s spleen was removed

and he received his first transfusion. He remained in Switzerland for

a month for observation and then returned to Cyprus armed with a

regular treatment and transfusion schedule.

When George turned eight, Dr Fanconi sent George’s father a package

containing vials of Desferal®, with instructions to take them as single

injections nightly. George’s pediatrician and family hesitated because

there was very little information about the drug at that time. It took

another two years before George started on Desferal®, after he was

referred to British hematology specialist Major Colin Bates.

George’s father died in 1972 and his mother decided to

emigrate to London, taking George to join his brothers,

who were already enrolled at universities there. He met

Dr Bernadette Modell, the director of the Thalassaemia

Clinic in London. Under her careful guidance and care,

George continued to do well.

George’s first few conversations with Dr Modell were a

major turning point in his life. Accustomed to his doctors

speaking only to his parents about his treatment, George

was surprised when Dr Modell spoke directly to him

instead. She asked him what he wanted to be when he grew

up. Since he was only 12 years old at the time, and had

never been spoken to about the future, his answer was that

he simply wanted to be as tall as his mother. Dr Modell wrote George’s

“wish” on his file cover and promised him that he would be even taller

than his mother someday. She also offered to pay George £100 if she

was not able to help him reach this goal – and if he did get his wish, he

would have to pay her instead! This was the first of many conversations

with Dr Modell that gave George hope for his future. In fact, under her

guidance, George went on to meet other patients and form the United

Kingdom Thalassaemia Society in London.

Life for George was not without challenges. He was later diagnosed

with diabetes and also had to undergo two hip replacements. In spite of

all this, he attained nine O-levels, three A-levels and a degree in Hotel

Management. He credits his success to the dedication of his parents

and doctors, particularly Dr Bernadette Modell and Dr Beatrix Wonke,

who appreciated the difficulties caused by having to make regular

visits to the hospital and allowed George’s treatments to be arranged

around hectic schedules. George recalls that they always treated him

as a human being (who just happened to have a medical condition),

rather than as a “patient”.

He also fondly remembers his mother’s constant reminders that there

must be a reason and purpose for his particular path in life. Her belief

and strength motivated him to strive even harder to achieve his dreams.

Meet a real Iron Warrior: George Constantinou

George and Iliya, his daughter

George and his mother

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(Continued from page 5.)

George met his wife Mary on the wards in 1976; she was part of Dr.

Modell’s team. They got married in 1996 and were blessed with daughter

Iliya in 1997. George says that of all the dreams and goals he has

attained in his life, none compared to the birth of his daughter. The joy

he felt when he held her in his arms for the first time was indescribable.

When he watched doctors perform her first blood test, he also gained

an insight into some of the pain his parents would have experienced

each time he was stuck for a routine blood test or transfusion. It also

provided him with an extra appreciation for what his mother, who is

now 83 years old, has done for him, and she still reminds him to take

his tablets whenever they speak!

To the young Iron Warriors, George offers the following words of wisdom:

1. Make SURE to follow your chelation program faithfully.

2. Ask yourself on a regular basis: “Why was I born and what is my

purpose in life?” Then find your purpose and follow it!

3. Recognise all the advantages and good opportunities that you have

been given.

4. Acknowledge that it is easier now than it was for older patients, and

take advantage of the research and information available.

5. Have lots of hope for the future.

6. Tackle small problems now, and this will help you be ready for bigger

ones that might come up later. Don’t look at them as problems – look

at them as challenges to be overcome!

Hey, kids! Show this section to your parents!Tips for parents

The heart is one of our most crucial organs, so it’s important for all of us to work to

keep our hearts healthy. This is especially important for children with thalassaemia,

because the heart is one of the places where iron from blood transfusions can build

up and cause serious medical problems over time. Here are some tips to help your

child’s heart stay healthy:

• Encourage your child to keep up with his or her prescribed chelation therapy

and follow any other advice from the doctors or nurses.

• Help your child stay fit by keeping active together (e.g., playing sports together,

walking him or her to school).

• Don’t give your child vitamin supplements unless a doctor prescribes them.

• Do your best to provide a balanced, healthy diet for your child: o Include lots of dairy products and other calcium-rich foods to help build

strong bones and teeth. o Try to limit iron-rich meats (e.g., beef, organ meats). o Look for meats and meat alternatives that are relatively low in iron, such as

chicken and soy products. o Include plenty of fresh fruits and vegetables. o Read food labels carefully and try to avoid products with added iron (e.g.,

white flour or rice that is labelled “enriched”, some pre-packaged baby foods). o Pickled and fermented foods can make the body absorb more iron from

food, so limit these or avoid them altogether.

Hey, kids! This section is for you!Iron Warriors tips for keeping a healthy and happy heart

Keep up with your chelation therapy! Think about good things, not bad things

Follow the advice of your doctor and nurse Move! Do one active thing each day

Eat healthy food such as fruits and vegetables, dairy products, white meats, soy

Do at least one fun thing every day

Eat less of foods that are rich in iron,e.g., red meat

Read your Iron Warriors Newsletter!

Keep a healthy and happy heart

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Here is your first

adventure!

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Coming soon! In the next issue of the Iron Warriors Newsletter, meet the newest member of the team – Liquid Girl!

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aActivities

aActivities

Help the Iron Warriors get to their spaceship

Need help? Check the solution on page 25.

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Cut out this page and cut along the dotted lines. Spread out the cards face down and mix them

up. Then test your memory by turning one card over at a time and then trying to find its match. You

may not have more than two cards showing at one time. When you make a match, take those two

cards out and continue playing until all the cards are matched up!

Find and circle all these words from the Iron Warriors Newsletter in the grid above!

They can run forwards, backwards, up, down or diagonally.

Need help? Check the solution on page 25.

adventure

art

butterfly

calcium

chelation

colouring

comics

exercise

happy

healthy

heart

iron

IronWarriors (all one word)

puzzles

spaceship

thalassaemia

vegetables

winner

Complete the word puzzle Test your memoryaActivities

aActivities

A T O O N B L C N W Z T R A M C H E L A T I O N E X I I D H R A E C I Z Z M N O N O C V R E L B A T Q U I R J R Q O E P N A R D L E E C O H B I L N E N S R I O T N S R V E P O T S I S V A S T H L U F D I U U I W A G O I N G Y P P A H R R C V E G E T A B L E S E S I E R M M S E L Z Z U P A K E N M E D I W N A S Y L R U N C G B X C A L C I U M T Q S L A A G E E R E N I R E I O S L P Z N A I R O N W A R R I O R S O A A L B X W K R Y L F R E T T U B

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Learn with the Iron Warriors Colour in the Iron WarriorsaActivities

aActivities

In Egypt, people say “ ”, which is pronounced

alb!

“ ”

In Greece, people say “ ”, which

is pronounced car-dee-ah!

In Brazil, people say “coração”, which is pronounced

coo-ra-sung!

In Indonesia, people say “jantung”, which is pronounced

jan-tung! In China, people say “ ”,

which is pronounced seem jum!

In Italy, people say “cuore”,

which is pronounced coo-oh-ray!

心臟

Can you draw a heart?

How do you spell “heart”

in your language?

On Planet Ferrous, we say “amuwhi”, which is pronounced ah-moo-why!

Words around the worldThe Iron Warriors love meeting interesting people from around the world and learning

new languages! This issue, we learn how to say the word “heart”...

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About the art contestEvery year the Iron Warriors Club holds an international

art contest for children with thalassaemia.

There are four age categories for the contest:

• Five years old and under • 10 to 13 years old

• Six to nine years old • 14 years old and over

Three pieces are chosen for each category and are included in the annual Iron Warriors calendar that is distributed as part of our annual International

Thalassaemia Day celebrations on May 8th.

The 2008 Iron Warriors art contest winnersFive years old and under 10 to 13 years old1st – Mustafa Atay, Turkey 1st – Ana Paula Aroma, Brazil*

2nd – Shorook Ossama Hammad, Egypt 2nd – Loi Wei Won, Malaysia

3rd – Doao Hisham Zarif, Egypt 3rd – Busra Kolag, Turkey

Six to nine years old 14 years old and over1st – Brune Beratti, Brazil 1st – Bahar Basdemir, Turkey

2nd – Beril Ata, Turkey 2nd – Yudi Sutrisna, Indonesia

3rd – Reem Ahamad Ibrahim, Egypt 3rd – Merve Ergiul, Turkey

How to enter Send us YOUR happy picture. Your entry should include one or more of the

following: butterflies, hearts and the Iron Warriors.

What else do you need to know?• Artwork should be at least 81/2'' x 11'', but no bigger than 11'' x 17''. • Artwork should be displayed lengthwise (landscape).• You can use crayons, pencils, paint, pastels or anything you like. • You must submit your artwork and entry form to us by 1 February 2009! You must completely fill out the entry form to be entered in the contest.• Artwork will not be returned and may be used in future thalassaemia

displays and publications.• The winners of the international art contest will be announced 1 April 2009.

My name is:

My age is:

My mailing address is:

My phone number is:

(Optional) My e-mail address is:

(Optional) The title of my artwork is:

Please ask your parent or guardian to complete the following consent form:

I hereby give ApoPharma Inc. permission to use artwork submitted by my child

(child’s name) in a national and international art contest. Winning

entries become the property of ApoPharma Inc. and may be reproduced in any way

the company sees fit, including but not limited to public display and publication in

newsletters, websites and the like. I also consent to the use of my child’s name, age

and country. I further understand that because of the volume of images to be collected,

original artwork cannot be returned.

I represent that I am the parent or legal guardian of _____________ (child’s name) and

that the above information provided by my child is correct.

Signed:

Name (please print):

Date:

REMEMBER! You must mail your entry form with your artwork by 1 February 2009 to:

The Iron Warriors Club

c/o ApoPharma Inc.

200 Barmac Drive

Toronto, ON, Canada M9L 2Z7

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Enter the Iron Warriors art contest

Iron Warriors art contest entry form

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*Ana Paula Aroma’s artwork is featured on the cover of this issue of the Iron Warriors Newsletter!

A winner of our last contest!

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More 2008 art contest entries Solutions to the activitiessSolutions

Do you need a little help getting the Iron Warriors to their spaceship

(page 17) or solving the word puzzle (page 18)? Here are the solutions:

A T O O N B L C N W Z T R A M C H E L A T I O N E X I I D H R A E C I Z Z M N O N O C V R E L B A T Q U I R J R Q O E P N A R D L E E C O H B I L N E N S R I O T N S R V E P O T S I S V A S T H L U F D I U U I W A G O I N G Y P P A H R R C V E G E T A B L E S E S I E R M M S E L Z Z U P A K E N M E D I W N A S Y L R U N C G B X C A L C I U M T Q S L A A G E E R E N I R E I O S L P Z N A I R O N W A R R I O R S O A A L B X W K R Y L F R E T T U B

aActivities

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Join the Club! Comments or suggestions?

The Iron Warriors pledge: I promise to do my best to remove excess iron and to encourage other

children with thalassaemia to work hard and stick with their chelation plan.

Become an Iron Warrior! Join the Iron Warriors Club!

My name is:

My age is:

My address is:

My phone number is:

(Optional) My e-mail address is:

Please ask your parent or guardian to complete the following consent form:

I, ___________________ (print your name), am the parent or legal guardian of

________________(your child’s name) and certify that the above information is correct.

I hereby give permission for my child to join the Iron Warriors Club.

Signed:

Name (please print): Date:

ApoPharma Inc. is committed to protecting the privacy of personal information. Personal information collected will only be used for the management of the Iron Warriors Club membership. This information will only be shared with our partners for assisting in the management of the Iron Warriors program. You may review our privacy policy at www.apotex.com.

Cut out and mail your Iron Warriors Club membership form to:

The Iron Warriors Clubc/o ApoPharma Inc. 200 Barmac Drive Toronto, ON, Canada M9L 2Z7

Tell us about yourself. Send us your ideas and stories, or tell us about events

happening in your part of the world. We would love to hear from you!

You can mail your comments or suggestions to:

The Iron Warriors Club c/o ApoPharma Inc.200 Barmac Drive Toronto, ON, Canada M9L 2Z7

Or you can e-mail us at ironwarriors@apotex.com.

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cComments

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Copyright © 2008. ApoPharma Inc. 200 Barmac Drive, Toronto, ON, Canada, M9L 2Z7

Iron Warriors is a registered trademark of ApoPharma in the United States and other countries