MAX Family Society Malaysia

ELN Recommendation in CML Management: Do you understand?

2011-10-27T10:16:00.002+08:00

Dear Friends,

Some of you might have full understanding about the ELN Recommendation in CML Management; but there might be too technical for some of our friends.

Jan, an active advocate from Germany sending me this updates today:

we are all aware that CML treatment guidelines, and milestones to be achieved by patients when on TKI therapy, are often not well understood by patients. Some while ago, a workgroup of European CML patient groups, supported by BMS, have engaged to produce a patient-friendly summary of the ELN Recommendations for treatment and monitoring of CML. The group includes Felice, Mina, Euzebiusz, Tony, Jana, Giora, Jan de Jong, me, plus three CML experts.

On 9/22, we had published these patient-friendly summaries in English, German and Italian, which you can find here (both in HTML for online viewing, as well as PDF for printout):

http://www.cmladvocates.net/cmlsummary

Additional versions in Czech, Spanish and French are underway, but have not been published yet due to regulatory restrictions. I also assume we will update the summary documents, once updated ELN treatment recommendations will be published by the ELN in 2012.

I hope these prove helpful - feel free to re-use them as you like. Any feedback from your side would of course be very appreciated - also suggestions what we could do in the next revision.

Best wishes
Jan

For your reading, please visit here.

19 Oct - We remember Max

2011-10-21T07:58:00.003+08:00

19 Oct is always the special day for all of us - Max's birthday.

Max touches so many of our life around the world, and here I would like to share a message from our dear friend from Malaysia, Anisah, deep from her heart:

Anisah Lim, Malaysia - October 19, 2011

"Dear Max Family On this earth, nothing is more precious than having a life and live it to the maximum no matter how brief it may be! Gracious is Our Lord! My family and I would like to extend our many many thanks and birthday wishes to Max who offered his life to God for the many many many lives out here in this world today. This precious gift God Sent through you the Max Family shall always be remembered by every life the the Max Family has touched and saved. Thank you so much. Syukur, Allahamdullillah! Anisah Lim"

To read more, you can visit The Max Foundation Website at www.themaxfoundation.org
or click here

Thank you for everyone of you out there - thank you for being together, thank you for giving yourself to your community, to the person in need, together, we will able to make it - improving lives of the people living with blood and rare cancers worldwide.

"GIVE SOAP – SAVE A CHILD" - You, can help to save life too!

2011-10-04T12:55:00.008+08:00

Max Family from Malaysia is partnering with The Max Foundation to run this initiative in Malaysia too!

Do you know that an antibacterial soap can make a huge different to a child who is undergoing cancer treatment? It could save a life!

Every day, hundreds of children lose their fight with cancer due to infections. You can change that!

During the Month of October, the month of Maximize Life, we invite you to be part of our global project “Give Soap – Save A Child”, because, kids can rise above cancer too!

See here for details of project at The Max Foundation Website

Want to participate from local level?
Here is what you can do - click on the poster below.

Be part of us!

Over the weekend in Kuching - Our voices are being heard!

2011-05-03T21:40:00.006+08:00

Some of you are aware that Max Family and The Max Foundation team was in Kuching during the long weekend.
Not for vacation, but for our mission - reaching out to patients, reaching out community to create awareness.

What kind of awareness?
We want to tell community that you, can contribute to cancer care, too.

How?
There're a lot of ways you can support cancer care.
One of them is through giving your supporting message to cancer survivors, support the World Cancer Declaration and do not discriminate people living with cancer.

Give your support today by visiting The Max Foundation Tribute Wall.

Our awareness activity drew local press attention, and these are the published stories:

By Borneo Post, Max Foundation in S/wak to collect messages

By The Star, CML patient's dilemma

You, can contribute to the cancer support, too!

2nd Patient Congress for People Living with CML, 28 Apr 2011 - another successful meeting!

2011-04-29T23:50:00.016+08:00

Well, I am writing this report from this lovely city called Kuching, East Malaysia; which is about 2 hours traveling time by flight from Kuala Lumpur.

For the 2nd year, Patient Congress for People Living with CML was successfully took place in conjunction with Malaysia Society of Haematology Scientific Meeting. It took place yesterday, 28th April 2011, at Pullman Hotel, Kuching, Malaysia.

Yes, we did it again!

The congress was organized by The Max Foundation and Max Family Society Malaysia, made possible by the support from medical professional organization - Malaysian Society of Haematology; as well as industries – Novartis as the main sponsor, and AirAsia who donated a few seats for enable patients to fly in.

Patients and caregivers arrived as early as 830 am, full with enthusiasm.

Opening remarks by Dr LP Chew, representing Malaysian Society of Haematology.

Dr Chew is practicing in Hospital Kuching, and she was particularly excited as the patient congress was the first of its kind in East Malaysia.

After the sweet and short opening remarks, ice breaking and motivation session was facilitated by En Baba Ismail, registered counselor.

His interactive way of conducting the session successfully made the participants engaged, and took part in the ice breaking activity. This was the magic moment when we saw everyone turned into “one Max Family”. From the shy, quiet crowd, the room turned into a warm, relaxed atmosphere. Everyone opened up themselves and give out themselves 100% to this “newly formed family”.

Before we continue with the highlight of the session – CML Education Session, a nice lunch was served.

It followed by disease education session which started with an information, yet easy-to-follow overview lecture by Dr Haris Rahman.

It was then followed by small group discussion facilitate by haematologists and pharmacist – Dr Haris, Dr LG Lau, Dr LP Chew, Dr KM Chang and Selina Wee. The Malay-speaking and Mandarin-speaking groups arrangement has successfully overcome the challenges of delivering information in Malaysia as we Malaysian are speaking different languages due to the different races.

One after another question was asked, real experiences were shared among participants; and our haematologists and pharmacist were never failed to share their expert knowledge with the groups. If we never stopped the group, the session would continue to go on and on. We spent the good one hour and 15 minutes for this fruitful session.

In Max Family, we never forget to thank the professional teams whom have contributed their time and energy to help patients to live better in all the possible ways.

Thank you to our speakers!

Before we ended the 2nd Patient Congress for People Living with CML, a group photo is the must-do!

Counting Down: 2nd Patient Congress for People Living with CML, in conjunction with 9th Malaysia National Haematology Scientific Meeting

2011-04-26T13:36:00.005+08:00

Remember the Inaugural Patient Congress which were taking place last year in Kuala Lumpur? You missed it last year? Well, here is the little report that you are able to “go back and be part of it”

In 2 days time from now, on 28 April 2011, we will be at the 2nd Patient Congress for People Living with CML; this time, it will be held in Kuching, East Malaysia. The congress is part of the Malaysia National Haematology Scientific Meeting.

With the support from Malaysian Society of Haematology, The Max Foundation and Max Family Society Malaysia is putting up the congress again this year. We are not forgetting Novartis Malaysia, the sponsor who has been very supportive in our patient initiatives. This year, AirAsia is also extending their support by donating a few flight seats to enable patients who are having financial challenges to be part of the congress.

We are expecting 65 participants in the patient congress, majority are patients and caregivers from East Malaysia – Sarawak and Sabah. This is the first time of its kind that a patient meeting in larger scale in the town. Speakers consist of counselor, haematologists, pharmacists who are very much involved in the care of CML in Malaysia.

The 9th Malaysia National Haematology Scientific Meeting, 29 April – 1 May 2011

Thanks to the generosity and great support of Malaysian Society of Haematology, The Max Foundation is given a booth during the scientific meeting. This is the 2nd year we were invited to be part of the meeting.

We plan to bring our brilliant sparrow along, creating a platform for everyone – the healthcare professional, industries who will be involved in the exhibition, to give support to cancer survivors through tribute wall, as well as sign the world cancer declaration. It is the time for everyone to realize that each voice counts!

The team in The Max Foundation Malaysia office and Max Family core group is well-prepared for the 4 days in Kuching!

Maximize Life every day! See you in Kuching!

First Announcement: 2nd Congress for People Living with CML, April 2011. Register now!

2011-01-28T15:36:00.005+08:00

If you did attend the 1st Congress that we had last year in Kuala Lumpur, I bet you will not forget the meeting – a big step taken by Max Family, great support from Malaysian Society of Haematology and The Max Foundation, as well as love from all the sponsors, supporters and volunteers.

So much useful information and practical tips exchange happened in the 1st Congress; as well as emotional and peer-to-peer support took place in everyone’s heart during that event.

You missed the 1st Congress last year?
It’s now the chance for you to grab the chance to participate the 2nd Congress this year!

Details:
When : 28 April 2011
Where : Pullman Hotel, Kuching, Sarawak
Time : 10.45am – 3.30pm

Sessions includes:
CML education – updates & information, by haematologist
About medication, by pharmacist
Motivation movement, by registered counselor
Networking & sharing among participants

How to register?
You need to complete a registration form, and submit to The Max Foundation before 23 March 2011.
To get one, please email to mymaxfamily@gmail.com or call The Max Foundation at 03-7726 9903.
You can also ask a copy from your haematologist.

Questions?
Call 03-7726 9903 or email mymaxfamily@gmail.com

See you in Kuching in April 2011!

Meeting You Again!

2011-01-24T09:38:00.005+08:00

Happy New Year 2011 to all, and thanks for all your support all these while.
Because of you, we are able to do so much, and supporting each other!

After the year-end holidays, we are keep to our full energy again.
We will have our patient group meetings roll out soon (in fact, we have done one in early Jan this year).

Please mark your calender:

Jan 10 2011 - Kota Bharu
Jan 27 2011 - Seremban
February 25 & 26 2011 - Kota Kinabalu (for GIST & CML sessions)
March 5 2011 - Kuala Lumpur (at University Malaya Medical Center)
March 26 2011 - Malacca

For details, feel free to write to mymaxfamily@gmail.com or all to our office at 03-7726 9903

See you soon! Let's make 2011 a greater year.

Happy Deepavali, 2010

2010-11-04T21:33:00.003+08:00

Wishing all our friends - Happy Deepavali!

October 19, 2010, Max's Birthday

2010-10-19T09:05:00.003+08:00

Taken from Maximize Life Blog, The Max Foundation Wesite

Posted by Pat Garcia-Gonzalez on October 19, 2010

For those of us who have lost loved ones to cancer, birthday anniversaries are always a difficult time. Having lost Max at the sweet age of 17, one feels such sadness for what could have been. What would he have become? What difference would he have made in the world? Yet, for Max, what could have been is not, but instead, something beautiful has evolved from the darkness: a worldwide movement of hope and courage. Max has become a symbol of hope for many, and today he lives in the hearts of people all around the world.

In honor of his birthday, I respectfully ask you to do two things: First, write a message of encouragement to people fighting cancer while adding your name to the World Cancer Declaration; and second, take one minute and watch a very short video of a boy living with cancer whose heartfelt message symbolizes the power of giving hope.

Otamurod is 12 and lives in Uzbekistan and like Max, was diagnosed with CML at a young age. The Max Foundation was blessed to be able to facilitate his access to treatment. Otamurod wrote a song for Max and in the song he says, “I saw a dream, I met Max in my dream. I was lying in a cold, dark, gorge all alone. Max reached out his hand to me. He rescued me. Together we flew to the sky; we landed to the vast, green meadow. He smiled at me under the shining sun… ” Watch his video. While you may not understand his words, you will certainly feel his love. Otamurod’s song and his feelings are the best birthday present anyone could ever have.

This October 19th, Max would have turned 37 years old. Happy birthday, Max; you are forever in our hearts.

Original post from The Max Foundation

We go all out - Cancer Is Treatable. NO DISCRIMINATION.

2010-10-16T18:54:00.004+08:00

This year, we go one step further, no only supporting the patients & caregivers in Max Family, but also the core group members go all out to our community, in the effort of creating awareness.

We want to tell people that "Cancer Is Treatable. NO DISCRIMINATION."

Today, diagnosed with cancer doesn't mean equal death;
it also doesn't mean the person is loosing working ability.

Everyone will be touched by cancer one day.

Do you want to see people that you loved being discriminate just because they have been diagnosed with cancer?

Do not discriminate people who is diagnosed with cancer, please give them an equal chance in the community.

How can you help?

- Find out the correct information about cancer from the healthcare professional.

- If you are an employer, please do not make pre-judgement before you evaluate the person's working ability & understand the disease condition.

- If you are not an employer, please help us in sending the message across: people diagnosed with cancer should also be having equal opportunities in the community.

- Get a copy of our Maximize Life campaign car sticker, put it on your car, and tell your friends to do the same.

- Send your supporting message at Maximize Life Tribute Wall, and add your name to World Cancer Declaration.

- Tell you friends to do the same!

We need to unite together, put effort together, to work towards a better cancer care.

We had the press conference while launching the campaign in Penang:

More stories about Maximize Life Campaign, click here.

Brave Sparrow @ Northen Region!

2010-10-09T21:47:00.004+08:00

Today, we have met so many amazing survivors, caregivers and volunteers like our little sparrow - with courage, confidence, and big heart in Northen Region.

More stories are coming!

October is Maximize Life Global Cancer Awareness Campaign, be part of this movement,
sign your tribute & add your name to World Cancer Declaration today. Don't wait!

Maximize Life Campaign kick-starts officially in Malaysia on 02 Oct 2010!

2010-10-04T09:23:00.014+08:00

Well, it was started in Malaysia during Sep 2010 actually, but it was officially launched yesterday, 02 Oct 2010, in Kuala Lumpur.

* * *

With the help from our panelists, we put up a forum discussion on “Roles of Patient Support Groups in Disease Management – Max Family as a Case Study”.

I must tell you that in Malaysia, support group is not yet a common practice, and I am proud to share that Max Family is one of the best groups among blood related disorder diseases.

One of the most interesting parts was when one of the consultant haematologists stood up and shared his comment during questions session of the forum.
This was what he commented:

• MF & TMF are doing a great job from the past 4 years in patient support group – meetings, disease information, emotional support;

• However, most of the patients who attended support group meetings are regulars, are those who have already compliant to treatment;

• Our challenge is how to capture those patients who have never attended patient meetings, whom normally not compliant in their treatment;

• Why patients do not want to join patient group meetings? From his experience as a clinician for years, these group can be categorized into 2:
o Group 1: Don’t care attitude or Don’t know.
o Group 2: This group of people does not want to be seen as “patient”, due to stigma or taboo. Known as people diagnosed with cancer is something shameful.

We are doing so much for Group 1 people through phone calls, through inviting them to meetings, and we should be continuing the effort.

Group 2 is the real issue here.
This is related to awareness, awareness from community as a whole. We are not only talking about within patients, but also talking about raising awareness among the public, the community.

In our community today, the myths and taboo about cancer is still a big issue.

No employee will get fired because he is a diabetic patient. But we are hearing so much about cancer survivors unable to get a job because he is diagnosed with cancer.

A high-blood pressure person will have no problem sitting on the same table to eat with his friends; but what are the stories that we are hearing from our cancer friends? They are being isolated because friends think that cancer is going to spread by sitting side-by-side.

Awareness is the key today.
We need to start something, from somewhere, to start raise awareness beyond our patient groups!

Well said!

The comment from the haematologist was just so right for us to launched the Maximize Life Awareness Campaign.

This year, The Max Foundation is partnering with Max Family in Malaysia to run the Maximize Life Campaign with the theme: Cancer is Treatable. NO DISCRIMINATION.

There were also a few caregivers and survivors stood up and share their experience related to the perception that they have received when they were just newly diagnosed.

* * *

We have created The Wall at the foyer of the meeting venue.
Patients/caregivers, physicians, nurses and even the waiters signed the tribute with their supporting messages and proudly paste on the wall.

We are also giving out car sticker as part of the campaign.

We are counting on your support in awareness creating effort.
You can help in this definitely - how? Simple!

- Sign the Tribute Wall & World Cancer Declaration here
- Get car sticker from us (write to maxmalaysia@themaxfoundation.org) & stick on your vehicle
- Get 10 of your friends to do the same!

Don't wait. Act now. This is not only cancer patients' issues.
It is mine, it is yours, it is our issue.
We do not want our next generation to continue to live in a community of cancer stigma, and being discriminate.

* * *

The kick starts of the campaign, the positive energy, the bonding created from the meeting yesterday was the starting point of our mission – Maximize Life! Cancer is Treatable. NO DISCRIMINATION. Raise above Cancer!

* * *

Thanks to these people who have worked so hard to make the day a success!

01 Oct 2010: Act Today: Sign Tribute Wall & World Cancer Declaration!

2010-10-01T07:12:00.008+08:00

Maximize Life Global Cancer Awareness Campaign kicks start officially today – 01 October!

You, regardless whether you are the survivor or supporter, you can contribute significantly to this campaign.

How?

The simplest action:
- Sign the Tribute Wall & World Cancer Declaration, today!
- Bring in 10 more people to do the same action – your family, your friends, your colleagues.

Act today, don’t wait!

Let’s Celebrate Our Life during Oct 2010 – Maximize Life Global Cancer Awareness Campaign

2010-09-21T08:45:00.002+08:00

Have you marked down your calendar yet?

We, the survivors, are celebrating our life and your life, during October, as part of Maximize Life Campaign!

We are counting you in!

Celebration of Life Party in 2010:
• Kuala Lumpur on 02 Oct 2010
• Penang on 09 Oct 2010

This year, through Maximize Life Global Cancer Awareness Campaign, we aim at giving encouragement for people diagnosed with cancer, increase awareness of the needs of people diagnosed with cancer, decrease stigma of cancer;
and of course, we, at Max Family is celebrating our life, our new life which is now more fulfilling and productive - we want to tell everyone that we are Maximizing Our Life, we are able to do, and so do you!

Do join us in this campaign, and do write to us at mymaxfamily@gmail.com to take part!

Maximize Life Global Cancer Awareness Campaign - October 2010, Ready, Set, Go!

2010-08-26T09:46:00.006+08:00

Yes, Max Family Society Malaysia will be part of this Maximize Life Global Awareness Campaign 2010, initiated by The Max Foundation.

We will kick start the activities in Malaysia by having the Celebration of Life party in Kuala Lumpur on 02 Oct 2010.

This year, through Maximize Life Global Cancer Awareness Campaign, we aim at giving encouragement for people diagnosed with cancer, increase awareness of the needs of people diagnosed with cancer, decrease stigma of cancer,
and of course, we, at Max Family is celebrating our life, our new life which is now more fulfilling and productive - we want to tell everyone that we are Maximizing Our Life, we are able to do, and so do you!

Do join us in this campaign, and do write to us at mymaxfamily@gmail.com to take part!

Local Radio Interview on 18 May 2010 - The Bigger Picture: Chronic Myeloid Leukemia

2010-05-21T14:49:00.007+08:00

This radio interview went on air live on 18 May 2010, 400pm – 430pm slot.

Guest: Dato Dr Chang KM, consultant haematologist & representative of Malaysian Society of Haematology

Topic: The Bigger Picture - Chronic Myeloid Leukemia

The Patient Congress that took place in KL during April 2010 did create some attention here and this radio interview was initiated because of the congress.

I think this is another great step in the effort in raising CML awareness in our community.

Thanks to everyone who has been giving their support all these while - the physicians, the nurses, the scientists, volunteers and most important, the survivors and the caregivers - you guys are the real heroes!

We are counting on your supports in this big movement.
Current activity - Calling for your arts!

Enjoy the interview!

Calling for Your Arts: Y2010 Annual Art Project

2010-05-20T16:44:00.004+08:00

Do not worry if you are not an artist;
Do not worry if you are not born to draw;
Do not worry if you have never take part in any art contest before…

Anyone can do an art if you listen to your heart!

Max Family Society Malaysia & The Max Foundation love to listen to your story through your arts, in any forms.

Once again, 2010 Annual Art Project is taking place starting from now – in Malaysia, Max Family & The Max Foundation are calling for your art pieces.

Survivors, living with blood cancer and rare cancers, family members and friends are all encouraged to participate in our annual art project!

This year’s theme is Maximize Life. Participants are asked to depict how people affected by cancer are able to live their lives to the maximum.

Selected arts will be featured in The Max Foundation’s Colors of Hope Gallery!
More about Colors of Hope Gallery, click here.

Questions?
Feel free to call The Max Foundation Malaysia office at 03-7726 9903 or write to Max Family Society Malaysia mymaxfamily@gmail.com

Looking forward for your art pieces!

Send in before 1 August 2010!

Another Step: 1st Congress for People Living with Chronic Myeloid Leukaemia

2010-04-27T17:21:00.023+08:00

Together we are making a difference!

24 April 2010 - I don’t think anyone who was part of the 1^st Congress for People Living with CML will ever forget about this great meeting!

With support from Malaysian Society of Haematology and Novartis Oncology Malaysia, The Max Foundation and Max Family have put resources together to make this congress possible, as part of the haematology scientific meeting.

Of course not forgetting the volunteers who have contributed their time & energy, and also everyone who attended the meeting.

THANK YOU, PARTNERS!

Participants started arriving as early at 1230pm. They met old friends, made new friends, met up with their physicians and nurses – the atmosphere turned into a great bonding circle. Some of them travelled more than 5 hours from another city to attend this congress.

The congress started with Opening Remarks from Dr Abd Razak Muhamad, President of Max Family. He is a great leader who has been working so hard for Max Family, and today, after 4 years from the initial 10-people group, it has grown so much.

Today, the dream of holding a congress came true;

Today, for the first time, a door opened for a patient group to hold congress in conjunction with medical professional conference;

And today, we knew, Max Family Support Groups is getting recognization from the country’s medical professional organization – Malaysian Society of Haematology!

The haematolology healthcare professional team had been actively showed their support to cancer survivors through this Maximize Life Tribute Wall – which was created in The Max Foundation booth during the 3-days AFH conference.

Healthcare personnel can show their support by choosing the message to sent to cancer survivor, and stick the teddy bear to the tribute wall. In 3 days, we have 200 supports for cancer survivors from healthcare team!

******************************

I must show you this great master piece from Fan, our CML survivor.

“Be Brave” was created in 2009, with this message:

The high wave represents challenges faced by everyone while going through CML journey. Although the wave is high, but the spirit and hope in each CML friend is higher and stronger with supports from physicians like YOU, physicians, nurses, families, friends together encouraging all our CML friends to be brave, stand up and live for a better life, for a better future.

Be Brave was given as token of appreciation from Max Family to all the partners and speakers yesterday. The little sparrow just stood up as Fan, someone who has never given up in life, someone who has given himself to the CML community.

Thank you, Fan!

******************************

Dr Alan Teh led the 1^st session on CML updates.

He lecture was seen very “scientific on the screen, but Dr Alan has done a fantastic job in explaining it in a layman, yet very informative.

I truly love when he made a comment to few of us during the break – he said, I do not want to underestimate patient’s knowledge, we should try to bring up the level. This is so true, from our observation, everyone was concentrating on his lecture, was taking notes, and people were following.

Q&A session was great with lots of questions from the floor – questions were answered, doubts were cleared; but of course, some questions are remained debatable. I guess this is why we need to continue to share, learn and exchange knowledge!

One of the key messages to take home:

Treatment Compliance! Make sure you follow what your physician told you, and take your medicine!

******************************

Session 2 was conducted in a forum-discussion format.

Moderated by Dr Razak, we were honored to have Dr Haris represented physician; Poh Tiong represented CML survivor and Pn Jamaliah represented caregiver.

The panelists and moderator did a great sharing, and very valid comments came from the participants, except I wished that we could have more time for this session!

Through this exercise, we came up with take home tips to help improving patient-physician communication:

******************************

Pat spoke for the closing. Today, she stood up on the stage, being with us who are making a difference in CML community.

19 years ago, she lost her stepson, Max in CML battle.

She could chose either not to talk about CML anymore in the rest of her life; or chose to help the others with the experience and knowledge she has in CML.

Through one life, today, thousands of people unite together, to make a difference.

One of the concepts The Max Foundation is promoting is Maximize Life – it is possible to live a productive and fulfilling life after a cancer diagnosis!

******************************

Making Music, Maximizing Life

Tony

The best for the last!

Our friend Tony is a singer-songwriter in Malaysia. Tony lives the expression “Maximize Life” every day through his music.

Before the congress officially ended on 24 April, Tony brought his guitar; everyone came forward, and joined in the sing-along.

Tony presented the song that he wrote for Max & Pat, “You”.

He said, Let’s make this life a blessing to others.

The congress is successful because of YOU!

Thank you for being part of it, thanks to everyone who came, who helped, who supported us,

and thanks to our volunteers who has never tired of contributing their energy and time to us.

Seeing you in next meeting!

Everyone Rocks! 1st Congress for People Living with CML

2010-04-26T17:45:00.004+08:00

Reports are on the way..... make sure you come back and check for updates!

Have You Registered Yet?

2010-03-18T20:58:00.003+08:00

The 1st Congress for People Living with Chronic Myeloid Leukaemia on 24 April 2010 at Kuala Lumpur.

Have you registered yet?
Don't miss out this opportunity to be part of this congress.

Registration closes on 22 March 2010.

For details, click here or here.

Questions?
Feel free to call The Max Foundation Malaysia office at 03-7726 9903 or write to Max Family Society Malaysia mymaxfamily@gmail.com

See you soon!

Remembering Max and Our Loved Ones

2010-03-09T10:34:00.001+08:00

Full story from http://themaxfoundation.org/News/FullStory.aspx?choice=176

In recognition of March 9th which marks the anniversary of the day Max Rivarola lost his battle with leukemia, we ask that you join us in lighting a candle in his remembrance and for all of our loved ones who are no longer with us. Let us take solace in their courage and pledge to honor their lives through our actions to fight cancer.

Add your loved one to our Memorial Wall.

Max’s legacy lives on in everything we do at The Max Foundation. To every partner, sponsor, donor, physician, community leader, advocate, caregiver, and to all the survivors who maximize their lives in honor of Max, thank you from the bottom of our hearts. Together we renew our commitment towards cancer control. We pledge not to give up until every person diagnosed with cancer has access to the best treatment and support no matter where they live.

Sign the Guest Book.

1st Congress for People Living with Chronic Myeloid Leukaemia (24 April 2010) – first announcement

2010-02-23T10:23:00.007+08:00

What are the updates in CML management in Y2010?

Are there any newer treatments available?

What do the CML studies show?

How should one cope with this diagnosis?

How to balance my life after I am being diagnosed?

How to take care of my loved one who is a CMLer?

The Max Foundation, Max Family & Malaysian Society of Haematology are proudly organizing the 1^st congress for people living with CML on 24 April 2010 at Kuala Lumpur.

Experts in haematology & clinical psychology will be speaking at the congress, transferring their knowledge to CML community, with the aim to increase patient knowledge, to work with CML community to increase qualify of life.

We also want to let you know that you are not alone in walking through this journey; you have us walking together with you.

The congress is now open for registration.
Seats are limited; registration is based on first-come first-served basis.
Registration closes on 22 March 2010.

Registration details, CLICK HERE! Or for online registration, CLICK HERE!

Questions?

Feel free to call The Max Foundation Malaysia office at 03-7723 9903 or write to Max Family mymaxfamily@gmail.com

This congress is made possible by sponsorship from Malaysian Society of Haematology, The Max Foundation and Novartis Oncology Malaysia.

Colors of Hope Gallery - Y2009 arts! Again, hear the voices, share the love!

2010-02-12T07:43:00.003+08:00

Across regions and cultures, a cancer diagnosis has similar devastating effects: fear and isolation set in and the world as we know it is turned upside down. These events are followed by a deep desire to survive and a greater appreciation for each new day, the privilege of having our loved ones with us, and the power of being alive.

This collection of art by people diagnosed with cancer around the world beautifully shows the universal emotions around a cancer diagnosis, as well as the power of access to proper treatment and support. Most of the pieces were submitted by people living with cancer in developing countries. Through the featured art it is possible to appreciate the impact of the diagnosis and the importance of setting channels of access to treatment for cancer in these countries.

Each piece represents a person living with cancer and their courageous story of survival. Featured art has been collected through our annual Art Project. We are especially thankful to the many patient groups who partner with us in making this project a success.

Do your part to raise awareness: Share this story and invite your friends and family to see how people living with cancer worldwide are expressing themselves through art.

Please click on the card to access our online gallery or visit our website at www.themaxfoundation.org and click on Enter Gallery!

Thank you!

The Max Foundation

Source: www.themaxfoundation.org

Turning One!

2010-02-01T16:19:00.002+08:00

MF turned into one on 31 Jan 2010!

Happy Birthday to MF!

Because of you, today we are celebrating our one-year old anniversary;

Because of you, today we are touching people's life;

Because of you, today we are able to reach out to people in need;

Because of you, I am living a beautiful life!

Thank you, to each of you, who has given your love, care and thought to everyone of us in Max Family.

Giving back to community: KL Charity Visit, Dec 09

2009-12-29T16:08:00.005+08:00

Every end of the year, TMF Malaysia team, Max Family friends and volunteer will come together to organize a charity visit – “Giving Back to Community, Bringing Laughter & Love Around Us”.

This is the 3rd year of our annual tradition. We visited an orphanage in KL.

I want to specially thanks our project coordinator, S Liang for doing a great job for planning this visit and also managing all the contribution from all over the places!

20 of us – from TMF, MF and also volunteers, brought laughter & love to the kids, and at the same time, we received so much from them – their sincere smile, and hugs!

We had games session, birthday celebration and goodie bags giving; the highlight of the day was the drawing session. Every kid enjoyed the day so much, so did the organizing team.

Some photos to enjoy.

Everyone from TMF & MF would like to express our appreciation by telling you:

"Thanks to all who have contributed your love, your care, your heart to us -

the visit was a great success & we are so blessed seeing the love around us!

Have a happy, peaceful 2010 New Year.

We look forward for a great 2010, with your love in our heart."

You were not around to join the KL charity visit? Don't worry.

Max Family Penang Group is going to have the charity visit in Penang on 16 Jan 2010.

If you would like to contribute for the Penang charity visit, please feel free to drop us email at mymaxfamily@gmail.com or click here.

We will update you about the Penang Jan 16 Charity Visit soon!

Love from MF Penang Group!

2009-12-17T09:17:00.004+08:00

This lovely hand-made card reaches our office today, from MF Penang Group - thanks to PT, J, A & QN for your thought.

This is the message written in the card, for all of us:

May there be

A world of happiness

At Christmas time for you

And the coming year be one

Where special dreams

And hopes come true

Wishing you a Merry Christmas & Happy New Year!

Yes, friends, thinking about everyone, and wishing everyone a great holiday, and have a great new year.

We, are continue working with you to achieve our dreams!

Hope, Love & Cheers from MF & TMF.

You can help to make the changes, too!

2009-11-09T10:59:00.005+08:00

Have you ever think of to contribute to a change in our community?

Have you ever think of you can change someone's life?

Don't underestimate yourself. Never ever.

Start to give yourself to the group in need now, today.

How?

Sign up to be Max Family Support Group volunteer, we need you!

1st Global CML Awareness Campaign: A Success Thanks to You!

2009-11-05T09:41:00.004+08:00

What did you do during the Month of Oct 2009?

We have done something meaningful,

something touched our heart,

something we will never forget.

We are fighters, we are advocates, we are supporters!

To all MF friends and families, tell this to

yourself now - "I am great! I am the champion."

Together, we are making a change in the world.
Watch this video; and tell your friends to watch this with you! Click here.

Life, is beautiful.

During the Month of October, We CELEBRATE LIFE!

2009-11-03T14:24:00.004+08:00

Call it a gathering;

Call it a party;

Call it a retreat;

Call it a chance to meet healthcare team;

Call it a meeting to know new friends;

Call it a get-together to meet old friends;

No matter how you call it,

It is a day where everyone came together –

to learn; to share; to support; to accept; to give; to open yourselves to a new family; to hug;

and to CELEBRATE!

Celebrate your life;

Celebrate my life;

Celebrate each other’s life;

Celebrate everyone who is living well today.

This year, for the first time, we were having 3 Celebration of Life in 3 different cities in Malaysia – Penang, Kuala Lumpur & Johor Bharu.

Our reaching out doesn’t stop here.

We will continue on the spirit, the energy, to power to live well; and to empower the others to life well.

So, all our family members of Max Family Society Malaysia – continue to be with us, continue to Maximize our Life, because we believe by unity, we can do so much to our community!

We love to hear from you – please stay in touch with us through emails, letter writings, leave your comments in this blog, talk to us via facebook, phone calls, and also our physical gatherings!

A Beautiful Saturday, 24 Oct, Celebration of Life in Kuala Lumpur

2009-10-26T22:29:00.015+08:00

24 Oct 2009.

It was a beautiful Saturday.

It was a special day for Max Family friends and families – we came together to have Celebration of Life 2009.

We are survivors, we are fighters, we are advocates, we want to make our life better, we want to make your life better , we are proud of ourselves who are making a change in our community, slowly but steadily – to come together in unity, to life a beautiful life together!

As early as 815am, our friends started to arrived. Everyone was greeted by Malaysian famous teh terik to get our “ummmpphhhh” before the program of the day. I was so thrilled when seeing everyone being so comfortable to each other; our new friends immediately blended in the big family so well with the warm welcome with the old friends.

At 930am, we started of our program in this nice auditorium. Dr Razak being the President of Max Family started the program. He shared the story of early days when few of us started to have the idea of starting CML support group. It was back in July 2006. I still remembered vividly in my mind that we had our first meeting in old haematology clinic, 10 of us, spent the Saturday afternoon sharing the idea. I must specially express my thanks to my great colleagues – Pat & Viji, for helping us with the first step.

Dr Razak shared the history of MF formation, our achievement up to date, and share his own experience of what he received from this big family. Everyone was moved with the story and realized that every individual is not only a “recipient” but also a great “contributor”. You, every one of you who is reading this entry right now, every one of you that has came to our meeting, is a great contributor!

MC then shared the message of The Max Foundation (TMF). TMF has work very closely with MF in Malaysia for the past 3 years. We are so happy to see the growth of everyone in MF – the coping mechanism, the level of sharing, the way everyone support each other, the interaction and they have really created ONE Max Family. In this family, there’s no different in skin colours, languages or religion - everyone is part of the family.

Our best friend, Pat was there with us through her magic video massage; also sending us “Here Comes the Sun” video clip.

Through the message and also the video clip, TMF brought everyone closer to the Sun – the hope.

Hope to be better, hope to live cheerfully, hope to live a beautiful life. It also led us a way to how to achieve the hope – by uniting with everyone, everywhere in fight against cancer, no matter where we live today!

Next, Fan showed his experience from Ireland – Livestrong Global Cancer Summit in August 09. He shared the global cancer burden and how can we, the people in Malaysia be part of the Global Cancer Movement:

Be involved in the local patient support group activities
Invite your family members to take part in the patient group activities
Each time after patient workshop, share the knowledge you have learned with at least one person in your community to create awareness
Volunteer a little of your time, your energy and your heart to your patient support group
Take good care of yourself to make sure your health is in good condition

Fan also shared his visit to Ringaskiddy, plant where Glivec is made. The people are working 24 hours non- stop to make sure quality Magic Bullet is produced. How can their hard work and effort being appreciated? Simple, Be Compliance!

Everyone then took a break by starting the Champion activity – giving emotional support, appreciation and motivation through these little Champion stickers. This activity is now part our workshop in Malayisa.

After a little exercise, everyone again seated to pay attention to the education session. Our guest speaker of the day is Dr Haris, who is one of the great supporters of TMF and MF. After the main lecture, participants went into small groups, based on the medium of communication. The education session took about 1.5 hours. Questions were non-stopped from the floor and 2 ways communication was taking place. The haematologists and participants just love this informal interaction!

Before the highlight of the day (cake cutting), we were treated by saxophone solo performed by one of our young CML survivor, R. See, he is maximizing his life with his music!

Suddenly, the light in the auditorium went off. Nothing could be seen.

Then we heard of Happy Birthday music, and on the stage, Dr Razak was carrying a cake, walking out facing everyone. Surprise and applause and the auditorium turned into a sentimental, warm, lovely atmosphere.

“Happy Birthday Max”

“Happy Birthday to everyone who is living a beautiful life today!”

"Maximize Our Life!"

Listen to Cancer Survivors Through Their Art Pieces - "Colors of Hope" Gallery by The Max Foundation

2009-10-17T10:49:00.004+08:00

Welcome to the Colors of Hope Gallery!

We invite you to explore the colorful works of art featured from around the world, each one representing a person living with cancer and their story of survival. Sharing this art is a way to connect you to the artist's experience and, we hope, enjoin each other in the collective fight against cancer.

Visit the gallery often and share it with your friends and family.

4th Oct 2009 - Celebration of Life in Malaysia, First station: Penang!

2009-10-13T09:08:00.004+08:00

4th Oct 2009 @ Penang

We came together to celebrate life - mine, yours and every cancer survivors and the supporters.

There's nothing more beautiful than maximizing our life and live a beautiful life.

"Don't give up. Keep on fighting!"

October - CML Awareness Month!

2009-10-01T13:04:00.006+08:00

Everyone is the survivor,
everyone is the fighter!

A very special month not only for you and me, but for all - October, the CML Awareness Month.

This month, we come together to celebrate our life,

we come together to reduce the feeling of isolation,

we come together to support each other,

we come together to raise awareness in our community.

Do a little a day, everyone contribute a little of your time, a little of your love, a little of your heart - and we will have so much as a group!

Mark the Celebration of Life meetings in your calender:

4th Oct - Penang

24th Oct - Kuala Lumpur

31th Oct - Johor Bharu

Max Family's Celebration of Life events are among the 3 out of 35 celebrations that will be taking place around the world.

Be part of the global awareness movement!

You can be part of this global awareness campaign to support our survivor friends, no matter where you live! Go to October CML Awaress Month now.

Tell your friends about this global movement, this beautiful effort - together, we can make things happen!

Cheers to all!

Life Celebration during Oct 09 - Let's come together to make a difference!

2009-09-16T09:49:00.006+08:00

You are not ALONE!

You have us around!

In the month of Oct, we will be having Life Celebration in different cities in Malaysia, joining The Max Foundation's spirit, to honour you as cancer survivor, as caregiver, as supporter and to raise awareness of cancer, in particular, of CML.

"You are not a patient, but a person living with CML, with good qualify of life".

Let's come together;

Let's celebarate our life.

These are the confirmed Life Celebration events which will be happening in Malaysia.

Oct 4th - Penang

Oct 24th - Kuala Lumpur

Oct 31th - Johor Bharu

Should you need any details, please feel free to contact us. Write to mymaxfamily@gmail.com

See you soon!

Act now! Please join us by signing the World Cancer Declaration today!

2009-08-12T21:02:00.003+08:00

From The Max Foundation website:

The time is ripe for cancer care to become a global priority.

At The Max Foundation, we can already feel the momentum building towards positive change in a way that we are confident will improve the lives of those affected by cancer. Now there is an opportunity to let your voice be heard around the world by signing the International Union Against Cancer (UICC)’s World Cancer Declaration.

Everyday, the voices of survivors living with cancer and their caregivers gets louder because of the International Union Against Cancer (UICC)’s World Cancer Declaration. After you sign, be sure to tell a friend or loved one about this important initiative!

Click here to sign the Declaration

Your signature endorsing the Declaration will help to:

Show the world's leaders that the global cancer community stands united behind this for call for action to reduce the global cancer burden significantly by 2020.
Represent a consensus between foundations, national and international non-governmental and governmental organizations, professional bodies, the private sector, academia and civil society from all continents that are committed to the vision of eliminating cancer as a major threat for future generations.
Help cancer advocates bring the growing cancer crisis to the attention of health policymakers at national, regional and global levels

Love and the MF’s spirit from KL to historical city Malacca!

2009-07-26T21:33:00.011+08:00

Yes, yesterday, 25 July 2009, we were there meeting our friends of CML in this lovely little town.

We spent good 5 hours together in the seminar room, shared and learned from each other.

Fan, the first representative from MF, shared his story with everyone in the room. One by one, everyone stood up, introduced themselves to all in the room. It was a great ice-breaking session to all, especially in the freezing room!

Dr YK Guan, the speaker of the day, led the education session with participants. He was one of the best speakers that we ever had. Through his excellent explanation and sense of humour,

everyone was engaged with the session, and I must admit that it was the first time ever I sat in the room listening to the whole education presentation with full attention. Thanks Dr Guan!

After the learning session, participants were introduced to the Champion Project which was just being launched on18 July. The main objective of the Champion Project is to encourage everyone to appreciate people has never failed to provide support along the CML journey.

Everyone enjoyed recognizing and being recognized as the Champion!

Meeting up with old friends, like Zaidi, Richard, Kak Midah, Johari; and knowing new friends were the most valuable moment for us – because we all know, supports and love doesn’t stop when we go home, it fact, it will grow in each of us!

I would like to dedicate my deepest appreciation and thanks to these people, who volunteered their time and energy, traveling after their work to help out in the meeting:

Fan & Eleen, Matron Tan, Hakkameow & Wei Yin, Dr Guan, and also Wei Meng – thanks guys!

To the Malacca team – Dr Lim, SN Tay & her dedicated team.

Also Dr Razak, Sahim, Mas & Pat who were there with us in spirit.

Thank you guys! Without each of you, we wouldn’t able to have a beautiful day yesterday.

Annoucement: Up Coming CML Workshop in July 2009

2009-07-09T21:54:00.002+08:00

Once again, MaxFamily Society Malaysia is organizing a CML Workshop for patients & caregivers.

Details are as follow:

18 July 2009
845am - 130pm
Auditorium, Hospital Ampang

Please register yourself if you wish to join in, please email to mymaxfamily@gmail.com

To whoever would like to contribute their time and energy, and be the volunteer of the day, you are most welcomed. Please drop us an email!

Life is Beautiful!

See you guys soon.

Together we maximize our life! Supporting others at the same time we are supporting ourselves…

2009-05-24T10:46:00.008+08:00

We had another great meeting yesterday, at UMMC this time.

Attended by 80 participants – people living with CML, their family members, physicians, nurses and volunteers – everyone brought along their spirit and smile and be with everyone has made the day a special weekend.

Some are our old friends who never failed to attend every workshop; some are the new faces whom we met for the first time yesterday.

No matter they are old or new friends, from yesterday onwards, they know, there’s a place, a group, a family for everyone of them. This group is called Max Family.

There were experiences sharing, interaction among participants, education and discussion session facilitated by supportive physicians, enjoyable moment having meal and chit-chatting. Time flew quickly and we had no choice but have to end the meeting session at about 2pm.

One of the highlights was when Tony, one of our old friend who brought his guitar and sang for us. Tony, a young musician, a CML survivor who never gave up on his life, wrote a song for Max, and his stepmom, Pat during Oct 2007.

To all our dear friends, support doesn’t stop when yesterday’s meeting ended. In fact, for yesterday’s meeting could be a
beginning point for new friends to stay in touch, for old friends to continue giving your support.

Please stay in touch by any possible means – phone calls, sms, emails, or even you are welcomed to drop your comments in this blog. We love to hear from you, we love to stay connect with you!

Last but the most important message – thank you, I don’t know what are the best word to express my sincere appreciation to the physicians, nurses, supporters, the volunteers who had sacrificed their weekend, spent their time with us, worked hard to make sure the meeting going on smoothly.

Muchas gracias!

Note: Please do not re-publish this piece of write up or re-use these pictures without getting permission from Max Family. Copy write protected.

CML Maximize Life Workshop - May 2009

2009-05-11T13:38:00.004+08:00

Date: 23rd May 2009

Venue: Pusat Perubatan Universiti Malaya (UMMC)

Bilik Pulasari, Tingkat 2, Blok Rawatan Utama

Time: 8:30 am till 1 pm (lunch provided)

Admission: Free

Invitation opens to all CML patients & families. Please register to confirm participation before 15th May 2009.

Contact Person:

i) Wei Meng - Wei.Meng.Ang@themaxfoundation.org

ii) Mei Ching - Mei.Ching.Ong@themaxfoundation.org

iii) MaxFamily - mymaxfamily@gmail.com

(click on image to enlarge)

Stand Up & Live for Life 2009, Penang 1 - 2 May 2009

2009-05-07T23:18:00.014+08:00

On 1 - 2 May 2009, we have organized a CML patient camp in Penang, Malaysia.

This is jointly organized by The Max Foundation, Max Family Society Malaysia & Malaysian Society of Haematology, and supported by Novartis Oncology Malaysia.

Highlights of the 2-days 1-night camp:

Motivation session
Session on Expressing your thought through art
Testimonial sharing session
Education Session
Interaction session among all the participants

“Compliance” is the key message of this camp – Compliance in taking medication, and compliance in follow clinic appointment to ensure you are achieving optimal response in the treatment.

Mr Lee, the counsellor started the first session by boosting everyone up. The lively and fun session warmed up the room, and everyone engaged fully. He delivered his lecture through interactive games and group activities. Self-discipline, positive attitude, correct mindset, work towards your goal, determine, proactive and love are the key points successfully planted in participants’ mind during the first session.

In the evening, our CML survivor, Sahimi was leading the art session – “express your thoughts through colour”. Sahimi, an artist, and also one of the active leaders in Max Family group was doing a great job in this session. The first 10 minutes were rather quiet, just a blink everyone were managed to transfer their thought on paper via crayon, and then we were seeing everyone turned out to be amazing artist!

During the day 1 evening session as well, Mr Lee facilitated a testimonial sharing session. 6 of the participants from different background, having different roles in their life came up to the stage and shared their experience with all in the room. Everyone paid full attention to them, and one of the participant told me, “I am able to relate their experience to myself as I am also walking through this CML journey. It was tough without any supports, but now, sitting in this room knowing everyone is my family member giving me energy to go far!”

During Day 2, everyone was concentrating to education session.

Dr Ong, consultant haematologist told us about the history of CML, treatment, options, monitoring and also importance of compliance.

Ms SP Wong, pharmacist explained what is happening in our body after we take the medication. Why do we need to take the medication every day and should not miss any dose.

Before the participants formed small groups for further education session discussion with haematologists, everyone was given a hands-on experience learning how to set timer to the pill box, as reminder to take medicine every day.

The camp ended by group declaration session by patients, declaring and promising that they will be compliant in their CML management, and always want to achieve the best!

This meeting was very special with our great supporter, Pat’s visit. Pat is the Executive Director of The Max Foundation who has changed so many life around the world. Her endless support and love to all of us always encouraged us wanting to do our best in giving back to community.

Thank you Pat, thank you Max!

We would also want to express our sincere thanks and appreciation to everyone who has made this camp a success – The Max Foundation, Max Family Society Malaysia core group, Malaysian Society of Haematology, haematologists, pharmacist, nurses, volunteers, everyone of your who has participated in the camp, and also Novartis Malaysia. Thank you!

Special thanks to our great photographer friend, Andrew, who has helped us in snapping all the sweet memories.

Calling for All Our Friends! Drop-in Meeting on 3rd May 2009

2009-04-23T15:14:00.004+08:00

Max Family Society Malaysia & The Max Foundation is organizing a drop in meeting in KL.
All our CML and/or GIST friends are welcome to drop by and meeting up each other.

Date : 3rd May 2009, Sunday
Time: 12noon to 2.30pm
Venue: Clinic Orthopaedic, Hospital Kuala Lumpur

This would be a very informal meeting, so come with relaxed mind, and prepare for a good catching up session.

You are welcome to come with your family members, if you are able to bring some snacks or drinks to share with all, that would be super.

See you on 3rd May 2009!

From Klang Valley to East Coast: Meeting Up Our Friends

2009-04-06T14:17:00.001+08:00

We are reaching more and more people!

On 4 April 09, The Max Foundation together with Max Family Society Malaysia bringing our love and spirit to East Coast.

On 3 April 09 evening, after dinner, four of us travel with car for about 3 hours, bringing the spirit along, and eager to meet our friends in East Coast for the first time.

We were at the meeting venue as early as 8am. After setting up everything in place with Wei Meng as our leader, we knew we were ready for the meeting.

With the assistance from nurses, everyone entered to the meeting venue was greeted with warm big smile. Some of them were so shy and quiet at first, but after a few conversation engagement, everyone turned the place into a friendly room - we started to know each other, from stranger, now we become friends.

Sahimi and Fan did a great job to open to sharing session. Thereafter we had East Coast friends who stood up and shared their own testimonial - all are so inspiring, and encouraged everyone in the room to live better!

Dr Ahlam & Dr Zack delivered their lecture in a very simple and informal way, and participants were focus on the education learning, each and everyone wants to know how to take good care of themselves to be better.

The meeting ended up a delicious lunch, everyone went home with a big smile and warm heart!

Friends, you are not alone in walking through this journey, as you have us with you!

Honoring those who lost their battle with cancer

2009-03-07T07:31:00.005+08:00

March 9th marks the anniversary of the day Maximiliano “Max” Rivarola lost his battle with leukemia in 1991 at the young age of 17. His friends, family, and everyone who had the opportunity to know him, will forever miss his smile, his love of life, and his courage.

Today we live our lives to honor his; yet, we are reminded that cancer continues to affect families in every country.

On this day we ask that you light a candle to remember Max, as well as to honor all our friends, parents, brothers, sisters, children, who lost their battle with cancer. Let us take solace on their courage, and pledge to honor their lives through our actions.

Please help us honor your loved one by submitting their name to our Memorial Wall

To read more please go to The Max Foundation

Why Are Patient Groups Important?

2009-03-05T21:56:00.002+08:00

As you adjust to life with a cancer diagnosis, you should prioritize taking good care of yourself. This means eating healthy foods, getting enough rest, and following your doctor's advice. However, taking good care of yourself is more than just paying attention to your physical concerns. It is just as important that you pay attention to your emotional health.

One way to support your emotional health is to join a patient group, or patient support group.

What is a patient group?

A patient group is any group of people that comes together to help each other. Patients AND caregivers can participate in patient groups. Sometimes, there are special groups just for patients or just for caregivers, and sometimes patient groups are a mix of both patients and caregivers.

Patient grups can be helpful in many different ways:

Practical Information

Sometimes, talking with other patients and caregivers can be very educational. Other patients can share information they have learned, including their own personal experiences. Often times, patient groups will organize lectures or question and answer sessions with cancer experts. These are great opportunities to educate yourself and learn more about your diagnosis and treatment.

Practical Help

You may be experiencing other types of dificulties, like financial issues or legal issues. A patient group can give you a place to brainstorm with others, and find potential solutions. The group can also help you to organize fundraising events.

A Support Network

A patient group can offer a support network of people who understand. Whle every patient's experience is different, chances are you will find someone else who has many things in common with you. It will be helpful to talk to other people who can relate to you. Often, it can relieve your anxieties. You may find it very helpful to have a group of people to talk to outside of your usual circle of family and friends.

Sharing Experiences

A patient group can be a place to share experiences with others, both good and bad. Listening to others talk about their stories can be a big relief to some patients, because it can make you feel less alone. A patient group is a great place to talk not only about your hopes, but your fears, as well.

Patient groups are a great source of peer support. It teaches us not only that we can rely on each other, but that being a support to others can be very satisfying. Sharing your own sotry with others can ease their worries, and give people hope. It may be useful to remember that "helping you helps me."

28th Feb: Maximize Life Workshop

2009-01-29T23:03:00.003+08:00

Date: 28th Feb 2009

Venue: Auditorium (Tingkat 2), Hospital Ampang

Admission: Free

Open to all CML patients & families. Please register to confirm participation before 20th Feb 2009.

(click on image to enlarge)

Happy New Year!!

2009-01-03T17:00:00.001+08:00

Max Family Visit to Pediatric Oncology Ward - A Success.

2008-12-16T22:40:00.007+08:00

The Max Family Visit to Pediatric Oncology Ward on 14th Dec 2008 was a success. About 20 Max Family members had join this visit to KK3 ward in HKL Pediatrics Institude.

Apart from the giving the contribution that we manage to gathered from the generous contributors, the kids were also surprised by the visit of Santa Claus and Clown. The objective of the visit had been achieved, to bring smile and happiness to the kids in the ward.

Max Family would like to express millions thanks to all the generous contributors, participants, KK3 ward staffs, parents, and everyone involved. Your contribution and participation had bring huge smile and love to the kids.

THANK YOU.

Love Without Borders

2008-11-05T22:48:00.007+08:00

(picture taken from The Edmonds Beacon)

(Article taken from The Enterprise Newspaper, dated November 5, 2008)

From Malaysia, a mural

Leukimia survivor brings his art to Edmonds.

By Chris Fyall
Enterprise editor

Call it a grand expression.
Call it a wonderful gesture.
Whatever you do, call it thankful.

Because the mural of Wen Heui Fan, 35, a Malaysian artist who traveled last week across the Pacific Ocean to paint in Edmonds, materialized only after Fan survived leukimia, and only after he obtained the help of Edmonds-based Max Foundation, and Fan is certainly thankful.

The Max Foundation works with leukimia patients worldwide, providing medication and offering support to patients who need it.

"They saved my life," Fan said Oct 22. "My whole family is appreciative."

After he was diagnosed at age 29, the Max Foundation gave him free medication that he otherwise could not have afforded, Fan said. They helped bring light to what was otherwise a dark and depressing situation, he said.

Fan is one of the 15 artists featured in a book called "Colors of Hope: Expressions from cancer survivors around the world" that the Max Foundation published earlier this year.

When Max Foundation was looking for a way to raise its profile here in Edmonds, it asked Fan to paint a mural inside the Aegis of Edmonds, an assisted living and memory care community near Stevens Hospital.

The foundation has operated quitely from Edmonds for 11 years. It helps 19,000 patients annually around the world, officials said.

Fan painted a 17-foot by 7-foot mural titled "Life, Low and Peak" in Aegis' memory care wing. The wing is home to Aegis' most fragile patients, said Nancy Talbott, the activities director.

"These are the forgotten people. These are the people nobody comes to see," Talbott said. "It is just amazing that he hears their story and he comes."

Talbott and Nataliya Semez, the Max Foundation's development director, helped arrange Fan's mural.

"Fan knows what it is like to come back (from a illness) and make a difference," she said. "They all want to give back. That's what they want to do."

(Article taken from The Enterprise Newspaper, dated November 5, 2008)

MAXFAMILY VISIT TO PEDIATRIC ONCOLOGY WARD DECEMBER 2008

2008-11-04T11:54:00.012+08:00

Dear all my friends,

Apart from organizing workshops to empower patient’s knowledge, MaxFamily, a Malaysian local support group for Chronic Myeloid Leukimia patients, also organizing regular charity ward visit.

Like last year, I would like to invite everyone to join us in this coming community charity project. We are organizing a visit to Pediatric Oncology Ward, Pediatric Institute, Hospital Kuala Lumpur on the 14^th December 2008. The purpose is none other than making every unfortunate kid to have enjoyable moment every second in his/her life.

Therefore we invite everyone who is interested (no obligation) to contribute any form of donation i.e. food, toys, stationeries, etc. For example you can contribute a dozen of biscuits packets or a few ‘not so expensive’ toys or a few boxes of color pencils or even one story book. Your contribution may be small but can be SIGNIFICANT when it is done collectively

We would be very grateful to be able to receive the contributions by 5th Dec 2008.

For further information, you can contact us at:

Dr. Abd Razak abdrazak_muhamad@yahoo.com.

Mei Ching mei.ching.ong@themaxfoundation.org

Fan: savianfan@gmail.com

Wei Meng: wei.meng.ang@themaxfoundation.org

Thank you.

DR ABD RAZAK MUHAMAD

President of MaxFamily, Malaysia.

Note: We would not be able to produce any receipt for your contribution as this is solely a volunteer effort.

Oct 19, 2008: Happy Birthday Max!

2008-10-19T11:58:00.003+08:00

Happy Birthday, Max!

October 19th marks the 35th birthday anniversary for Max Rivarola, in whose honor The Max Foundation was founded.

Thank you, for making our life beautiful!

We Have Made It! Oct 18, 2008 – Together We Celebrate Life

2008-10-18T21:56:00.005+08:00

About 100 of us gathered today to see each other, to support each other, and to celebrate life today – CML friends and families who came from various places; physicians who have being so kind sacrificing their weekend; nurses who are always ready to support us; and volunteers who are contributing their energy and time to us.

Organized by The Max Foundation & Max Family, with support from physicians; today everyone had a great day meeting up old friends and knowing know friends. Coming from different backgrounds, we are having a same objective – to life a better life, and being there to support each other to go through this journey.

Oct, the month of celebrate life for all in Max Family & The Max Foundation. Max, your courage and your spirit in never giving up hope always live in our heart.

Our dear physicians and nurses, you guys are the most important person to everyone of us – guiding us through treatment, management, towards a better quality of life. Thank You our physicians!

Caregivers – without your company and supports, we, will never ever able to walk through this path.

Every CML friends – you guys are the true heroes! Please tell yourself that you are the best, and you are doing great, and you will continue to do great.

Volunteers – You guys are the group that we appreciate the most – contributing your time, energy, spending your weekend with us. Thank You!

Life is Beautiful.

Oct 18: Together We Celebrate Life - Look out for details!

2008-09-22T17:30:00.009+08:00

October is always the month of celebrating life for us in Max Family - it started from last year when we gathered together during the month of October to remember Max, a young boy who have fought CML with courage and grace.

This is the 2nd year Max Family friends are going to be together again, to give ourselves to each other, to support and to feel the energy extended by Max to all over the world.

Life is Beautiful - Maximize Our Life!

(click on image to enlarge)

Colours of Hope Workshop 28 July 08 - It was so great seeing you guys!

2008-07-26T23:47:00.005+08:00

Today we had another great session again - it was so good to meet our old friends, and also knowing new friends who are having a common goal.

We would like to say BIG THANKS to participants who attended the workshop,
to physicians who had contributed their time and share their professional knowledge with us;
the counselor who have contributed his time and conducted the 3 hours motivation session; nurses and hospital staffs who have supported us in all possible ways;
volunteers who have spent their who day with us running around making sure things were all going on smoothly;
organizing team and every each of you who has been so supportive, and keep inspiring us!

Don't forget our next workshop!

My Journey

2008-07-17T23:33:00.003+08:00

Life Begin After CML by Jat
(Taken from first Issue of Max Family Newsletter on 2007)

One would think that having been diagnosed with Chronic Myeloid Leukemia (CML) would mean the end of the world for me, or anyone for that matter. What more when it was told to me on the morning of my 36th birthday. The irony of it!

As would any sane human being would be, I was devastated that day, but only for that day. Having very supportive friends and family quickly drove me out of the rut. Many suggestions came about as I'm sure all of us have experienced such as "Tongkat Ali", Noni fruit, Horses' milk (!) just to name a few. A well meaningful and much appreciated.

For me personally, CML has brought me happiness, lots of it. You could say, CML is my lucky charm. You must think I'm crazy ... out of my mind! How could having CML be good?

How? I opened my eyes, my mind, and my heart. I opened them up to the positive things around me.

A month after I was diagnosed, I met a girl that was to become my wife after 37 years of being single, thanks to my best friend's last ditch effort. Mind you, many have tried to get me hitched. Many have given up. Starting with dates at the hospital ward in January 2006 our relationship quickly blossomed and we proposed to each other on Valentines day that year, a day after her birthday. We got engaged in April 2006 and married in June 2006. The best gift of all, by early September my wife and I have a son. Unbelievable! It is a risk, but it's something my wife and I willing to take. I just can't describe with words of the feeling I have. It is just out of this world!

I made new friends, the Max Family core members. My new family. A group of like minded friends with the same objective ... to live, because we can, to have hope because there is, and to help other CML patients realize the fact. After 2 Max Family events, the family has increased to include all of you. It was also amazing to have met Pat, the co-founder of The Max Foundation, in person but also Viji, Ayeshah, Wirat, and Nelia, the Max Stations for India, Thailand and the Philipines. I would also like to thank TMF and Novartis for the Glivec International Patient Assistance Program (GIPAP).

It just goes to show you that if we open our eyes, mind, and heart, we can always find the good that has came out of having CML. Before CML, I was a loner, alone, with nothing much to shout about in my life. After CML, I have so much to looks forward to, and so many friends to call my family.

No matter how hopeless life seems, there's always hope. To lose hope is to lose everything.

WINDOW

2008-07-13T23:17:00.001+08:00

WINDOW by Fan

WINDOW is about the inner world of Humans. We always live at a corner in a dark room when something bads happens to us. We should live with confidence beyond the window. Do not live and torture yourself in the dark room. Let us live and grow with joy and confidence. Let us open the window and welcome the beauty of the world. Our friends and families are always there to support us on our journey out the dark room.

Up coming CML workshop: 26 July 2008

2008-07-11T08:22:00.001+08:00

Dear Friends,

It's time again for us to be together, share and learn from each other. Our next CML workshop will be taking place on 26 July 2008 (Saturday). Details as follow:

Date: 26 July 2008

Time: 8.30am - 5.00pm

Venue: Auditorium, Hospital Ampang, Selangor

MAX Family Society Malaysia

ELN Recommendation in CML Management: Do you understand?

19 Oct - We remember Max

"GIVE SOAP – SAVE A CHILD" - You, can help to save life too!

Over the weekend in Kuching - Our voices are being heard!

2nd Patient Congress for People Living with CML, 28 Apr 2011 - another successful meeting!

Counting Down: 2nd Patient Congress for People Living with CML, in conjunction with 9th Malaysia National Haematology Scientific Meeting

First Announcement: 2nd Congress for People Living with CML, April 2011. Register now!

Meeting You Again!

Happy Deepavali, 2010

October 19, 2010, Max's Birthday

We go all out - Cancer Is Treatable. NO DISCRIMINATION.

Brave Sparrow @ Northen Region!

Maximize Life Campaign kick-starts officially in Malaysia on 02 Oct 2010!

01 Oct 2010: Act Today: Sign Tribute Wall & World Cancer Declaration!

Let’s Celebrate Our Life during Oct 2010 – Maximize Life Global Cancer Awareness Campaign

Maximize Life Global Cancer Awareness Campaign - October 2010, Ready, Set, Go!

Local Radio Interview on 18 May 2010 - The Bigger Picture: Chronic Myeloid Leukemia

Calling for Your Arts: Y2010 Annual Art Project

Another Step: 1st Congress for People Living with Chronic Myeloid Leukaemia

Everyone Rocks! 1st Congress for People Living with CML

Have You Registered Yet?

Remembering Max and Our Loved Ones

1st Congress for People Living with Chronic Myeloid Leukaemia (24 April 2010) – first announcement

Colors of Hope Gallery - Y2009 arts! Again, hear the voices, share the love!

Turning One!

Giving back to community: KL Charity Visit, Dec 09

Love from MF Penang Group!

You can help to make the changes, too!

1st Global CML Awareness Campaign: A Success Thanks to You!

What did you do during the Month of Oct 2009?

We have done something meaningful,

something touched our heart,

something we will never forget.

We are fighters, we are advocates, we are supporters!

To all MF friends and families, tell this to

yourself now - "I am great! I am the champion."

Together, we are making a change in the world.Watch this video; and tell your friends to watch this with you! Click here.

During the Month of October, We CELEBRATE LIFE!

A Beautiful Saturday, 24 Oct, Celebration of Life in Kuala Lumpur

Listen to Cancer Survivors Through Their Art Pieces - "Colors of Hope" Gallery by The Max Foundation

4th Oct 2009 - Celebration of Life in Malaysia, First station: Penang!

October - CML Awareness Month!

Life Celebration during Oct 09 - Let's come together to make a difference!

Act now! Please join us by signing the World Cancer Declaration today!

Love and the MF’s spirit from KL to historical city Malacca!

Annoucement: Up Coming CML Workshop in July 2009

Together we maximize our life! Supporting others at the same time we are supporting ourselves…

CML Maximize Life Workshop - May 2009

Stand Up & Live for Life 2009, Penang 1 - 2 May 2009

Calling for All Our Friends! Drop-in Meeting on 3rd May 2009

From Klang Valley to East Coast: Meeting Up Our Friends

Honoring those who lost their battle with cancer

Why Are Patient Groups Important?

28th Feb: Maximize Life Workshop

Happy New Year!!

Max Family Visit to Pediatric Oncology Ward - A Success.

Love Without Borders

MAXFAMILY VISIT TO PEDIATRIC ONCOLOGY WARD DECEMBER 2008

Oct 19, 2008: Happy Birthday Max!

We Have Made It! Oct 18, 2008 – Together We Celebrate Life

Oct 18: Together We Celebrate Life - Look out for details!

Colours of Hope Workshop 28 July 08 - It was so great seeing you guys!

My Journey

WINDOW

Up coming CML workshop: 26 July 2008

Together, we are making a change in the world.
Watch this video; and tell your friends to watch this with you! Click here.