Tuesday, April 27, 2010

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

Together we are making a difference!

24 April 2010 - I don’t think anyone who was part of the 1st 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.


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 1st 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


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!


ajak said...

together we stand and support each other

True love said...

Happy to see so many happy patients at the end..spirit lifted !

Haris Abdul Rahman said...

I just managed to blog about the event here on http://bit.ly/bwwl7Y

Was rather busy earlier.