Sound Bite:
"Clap Your Hands"
English version
Chinese version
This soundbite is a production of
David Communications Group
MDAS is the adopted
charity of
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Feb 2005 (Vol. 1 No. 7)
EXCERPTS:
Editorial
Raising funds is a serious affair for MDAS, for we depend largely on these efforts to support our programmes and ambitious plans. This year's events and outcomes have been exceptional by all measures. We are grateful to the corporations that have sponsored these efforts. We thank them heartily - 93.3 FM and Shaw Organisation, DBS Bank and CK Tang and others. We were fortunate to have enthusiastic volunteers helping us, especially Carol and Janet from Mass Comm, Nanyang Technological University, DBS Bank volunteers, Beatty Secondary School students and others. Without our sponsors and volunteers, our fund raising would have been far less successful. For its part, MDAS must continue to lead and drive its own fund raising, with committee and membership actively involved. We must help ourselves, for only then can we convince others to help us. It was gratifying to see our members and their families happily playing their part to raise funds, and in the process, raising society's awareness and raising their own self esteem.
"Exciting, Enjoyable, Fulfilling..." This was how one young member with muscular dystrophy described his experience raising funds over the holiday season, - singing Christmas carols, selling greeting cards designed by co-members and seeking donations in busy shopping malls. When you realize he was previously apprehensive, withdrawn from society and low in self esteem owing to his severe physical disabilities, you will agree something remarkable has happened. He has shown he can contribute to his own cause. His obvious disability may have spurred the public's contribution, but his active participation deserves their respect. To all the MDAS members with muscular dystrophy who helped in our fund raising events, we say "Bravo!"
Dr Yee Woon Chee, Ag President
Public Forum on Vital Information on Respiratory Support
Public Forum Presents Vital Information on Respiratory Support for Muscular Dystrophy and other Neuromuscular Diseases
For some people with muscular dystrophy, the disease may progress to the point of respiratory failure, i.e. when breathing effort no longer meets the body's needs. It is very important to recognize when this happens, because early treatment will improve general wellbeing and may slow the progression of disability. However, patients are often not aware when this happens. For these reasons, MDAS decided to organize a public forum on the subject for public education.
This public forum, entitled "Value of Respiratory Support for Muscular Dystrophy and other Neuromuscular Diseases", was held on Sunday 1st August 2004 at the National Neuroscience Institute (NNI). The forum was partially sponsored by the Ministry of Community Development, Youth and Sports (MCYS). Just over 100 people attended, including people with these medical disorders and their families, and health workers and professionals from medical institutions and VWOs.
Dr. Ong Kian Chung, a consultant in the Department of Respiratory Medicine, Tan Tock Seng Hospital, described the early symptoms of respiratory failure, which include headaches on waking in the morning, poor or disturbed sleep, persistent cough, slowed thinking processes and more rapid decline in strength and well being. By the time difficulty with breathing occurs, it may already be quite advanced. Shortness of breath, when it occurs, is often first noted when lying flat in bed.
He was followed by Dr. Kor Ai Ching, a consultant from the same Tan Tock Seng Hospital department who spoke on equipment used to provide breathing support.. She focused on "non-invasive respiratory support", whereby support is provided with no need of surgery. A machine delivers air at increased pressures through the mask fitted over the face or nose, so that when the patient takes a breath, more air is introduced. The pressure may be set to fluctuate with breathing ("BIPAP") or to remain at a constant pressure ("CPAP"). Usually, the patient only needs to use the BIPAP or CPAP ventilation during sleep.
The last speaker, Dr. Daniel Goh, associate professor and senior consultant from National University Hospital, reviewed respiratory problems in children with muscular dystrophy. He mentioned medical complications that may be associated with breathing difficulties, such as problems with speech and swallowing, sleep apnea and increased risk of chest infections. Like Dr. Ong, he emphasized the need to recognize the early warning symptoms of respiratory failure and stressed the importance of baseline and follow up evaluations.
Before the forum ended, two MDAS members who are using respiratory support devices for respiratory failure spoke about their experience. They were Mr. Julian Chew, Ms Mary Kaw. The audience found their accounts riveting and moving.
Dr Yee Woon Chee, Ag President
Dont Treat Me Like That
Being physically challenged, we sometimes feel much rejected by the society. This is because disability often creates a barrier blocking our way to make friends. The result of this will make us feel that people are treating us in a lousy manner. Therefore, sometimes we would have this thought of not wanting people to treat us in this manner.
Often, though not all times, we can actually prevent such feelings and thoughts from coming to us. How? We can create an opportunity to interact with people, instead of them coming to us. Let me list down some of the ways we can create this opportunity...
Dare to ask for help
Whenever we need help, we should not wait for people to come and help us. People do not always know when we need help and they dare not help us as they are afraid of hurting us if we are not handled properly. Therefore, we need to have an initiative to ask for help from people. This way, those who are willing will come forth to help us and we would not feel rejected by them.
Tell 'em
Many times, including me, when we are asked about our disabled condition, we dare not reply or tell them. When we did not reply, the person asking the question will take the silence as a "No, I do not want to talk to you". If we tell them our conditions, they would understand us better and know where we need help. Adding to this, it would be best if we could tell them with much more detail.
Get the ball rolling
Sometimes it is best to understand why people would not talk to us, than to feel rejected by them. There are many reasons as to why they would not talk to us. One of them is that people are afraid that they might hurt our feelings if they are not careful with their words. This reason is why we have to be the one to get the ball rolling. When we do this, we are telling people that we welcome them to talk to us and we will not be over-sensitive.
This are the few ways that I feel is very useful to help us prevent the feeling of rejection. There are still lots of many other ways we can do, so if you feel that these ways are not helping you, you can find out more. The last thing I would like to say is to remember that we are not rejected by the society, but people are more or less not familiar with our conditions.
Oh Boon Keng, MDAS Member
MDAS Family Camp - Reach4the Stars (5 December)
This family camp signifies a get-together for all the family members to enjoy and do something special together.
For starters, we had a drawing competition, which allowed the family members to work together and produce an artwork they feel proud of, bringing out their ideal family with pasta and markers. Then separate workshops for the teenagers and parents were held concurrently. From "Making Friends" - a workshop for the teenagers to further improve their social skills, to "Blossoming Home" - a flower arrangement session for parents to help them better understand family dynamics, our participants were kept engaged in hands-on activities with plenty of laughter.
Next, we had a sing-along session and games. It was very exciting for all because it required unity for them to complete their tasks. This definitely strengthened their bonds.
Sad to mention, all our digital cameras ran out of battery during the prize presentation. For all the winners, I would like to congratulate them for their enthusiastic participation throughout the camp; for those who did not win, it was all right because they can always try harder the next time. The lesson we all learned was to "Reach4the Stars", which meant for us to challenge our limits and reach for our ultimate goal.
Lastly, I would like to take this opportunity to thank MDAS, Southeast Community Development Council, Temasek Junior College, all volunteers, organizers, sponsors and participants in making this camp a great success. Hopefully, we will be able to organize such activities in the near future.
Xiao Yiying Cecilia, Student Organiser from TJC
A Little Christmas Dream with MDAS
At Tampines Mall last December, a landmark series of Christmas roadshows was launched. Jointly organised by MDAS and with support from CapitaLand and YES 93.3FM, the occasion was graced by Taiwanese VJ-turned-singer Wilber Pan Wei Bo. Aptly themed "A Little Christmas Dream with MDAS", the roadshows proved to be a huge success in many aspects.
Greater public awareness was created about Muscular Dystrophy and the association, while also improving the visibility to complement the publicity generated by the radio promotion of YES 93.3FM thus far. The public generously contributed to our fundaraising efforts and sales response of our in-house Christmas cards was excellent.
At the same time, the roadshows provided MDAS members and their families the opportunity to play a role and do their part for the association. It was heartwarming to see the integration of the MDAS family. Through the caroling performances, many of our young members also became more confident in carrying and expressing themselves, especially so in front of the public. A truly magnificent end to the Year 2004!
Poh Chien Sheng, Volunteer
HIPPO Bus Ride
9 December @ Orchard
On this special day, four of our MDAS kids had the opportunity to tour Orchard Road on the Hippo Bus with the legendary Andy Lau and Rene Liu!
Atop the bus, the celebrities gave out presents to the kids and spoke sincerely to each one of them in turn. They also joined voices in birthday song for our little Sherry Toh.
With gifts aplenty, the smiling company of Andy gou-gou and Rene jie-jie, and the great thrill of seeing the Christmas lights, the children were treated to a truly memorable evening.
Movie Charathon (9 December)
Guest Starring... Andy Lau & Rene Liu
Thanks to the fantastic publicity efforts by YES 93.3FM and generous support of Shaw Organization, the Movie Charathon was a resounding success, which garnered over $20,000 for MDAS! At the start of the event, the lively deejays warmed up the crowd with games and spoke passionately about MDAS. Dr Yee chipped in with a note of appreciation. Andy Lau and Rene Liu were both charismatic and charming as they greeted the crowd before the screening of "A World Without Thieves". For the compassion and enthusiasm of all the organizers and participants, I give this movie charathon FIVE STARS!
DBS Christmas Party
23 DECEMBER 2004 @ Asian Civilisations Museum
For a dose of culture, the day started off with a tour around the museum. Notably, our guides were DBS employees, who had spent much effort in rehearsing for their interim roles. A sumptuous buffet was then offered at the auditorium. This break allowed our members to interact with the DBS volunteers.
Up next was a show with magic tricks, amusing games, and an entertaining spoof of the musical "Grease". The atmosphere was charged with merriment and our members could be seen laughing at the performances.
Thank you DBS for making this Christmas party such a unique one for us!
Lee En, Volunteer
Visit to Lord of the Rings Exhibition
@ Science Centre 22 May 2004 organised by Lim Shin Ming, Member
Shin Ming:
"I am so bored, what to do to keep myself busy?" I thought to myself. I was sick of playing computer games and chatting had become so boring. "Ah what can I do?!" I shouted.
Then, I thought for a while. "Yup, I can organize a trip to the Lord Of The Rings Exhibition!" I called Sherena, who encouraged me to go ahead. But I told her that I was very scared I couldn't do it. Finally, I mustered all my courage. I sent an email to Singapore Science Centre but there was no reply. So, I was forced by my friends to give Science Centre a call. And everything was confirmed in five minutes.
After that call, I could kill time more easily. I spent days preparing for the trip.
On the eve of the trip, I slept like a log - still so relaxed - and woke up feeling very energetic. I reached the Science Centre quite late though. "Aiya! ….. organizer still like that," I laughed at myself.
Ming Hui:
We gathered outside the McDonald's outlet to await the arrival of our merry band. Shin Ming arranged us into groups - Elves, Wizards, Hobbits and Dwarves. This idea of grouping was very creative and it suited the day's theme for the LOTR exhibition.
The exhibition was amazing, to say the least. It showed all the equipments, props and costumes used in the filming of the LOTR movie trilogy.
After that, we had lunch at the McDonald's. We chatted while we ate - everyone had an enjoyable time. While we were eating, a group of students from CHIJ School were filming us. It was kind of awkward, eating in front of the video camera. But what to do, the video was their school project for MDAS.
Shin Ming concluded the day's outing by thanking everyone for coming and giving him the fullest cooperation. He also pointed out that it was not very easy to organize an outing like that. Thus, we must appreciate the efforts of our activity organizers, the most important of whom is Aunty Sherena, for all the wonderful activities we had in MDAS.
Shin Ming:
I think this trip was both a fun and enriching experience for me. I know that there are some people who unfortunately couldn't go for the exhibition - don't be jealous of me ok?
Lim Shin Ming & Tan Ming Hui, MDAS Members
Outing to Singapore Zoological Gardens
8 Aug 2 2004 organised by Oh Boon Keng, Member
All the participants came with a great big smile, with some feeling pretty excited about today's Zoo Trip. The five volunteers also came with delighted looks. Seeing their eagerness and joy, I was of course feeling great!
After a short briefing by me, the day's booklets were passed to the participants and they were dismissed to start on their Word 'Hunt'.
While they were having fun 'hunting'for the answers, I went around seeing the amazing animals in their daily life. I enjoyed seeing the animals, animal shows and animal feedings. The participants were still busy 'hunting'.
At around 4pm, we strolled back to Jungle Flavour for an ice-cream treat. On seeing the splendours of the delicious ice-cream, we immediately tucked into it. Meanwhile, a panel of strict judges were marking the answer script of the Word 'Hunt'... These judges were my sisters.
After the treat, the results of the Word 'Hunt' were announced, accompanied by the presentation of the awards and Tokens of Participation.
I had certainly enjoyed organising this Zoo Trip, even though there was a lot of hard work and detailed planning involved. I felt that I had learnt many things and grown a lot through organising this trip. Therefore, I hope that I can organise more events or trips in the future.
Oh Boon Keng, MDAS Members
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