‘Dusty’s Trail: Summit of Borneo’ (2013): Interview with Catherine Jayasuriya

During the illustrious and world-renown Cannes Film Festival, which just celebrated the close to its 66th year, the St Tropez International Film Festival took place next door in Nice, France from May 13th-17th. One of the films to feature at this year’s St. Tropez Film Festival was: ‘Dusty’s Trail: Summit of Borneo’ (2013), a labor of love documentary about the Duchenne disease suffered by young boys around the world. The film by newcomer writer/director/producer Catherine Jayasuriya and produced by Allan Smith of Dreamquest Productions held its premier at the 2013 Newport Beach Film Festival, and most recently held it’s international premier in the south of France at the St. Tropez Film Festival.

‘Dusty’s Trail’ is named after Jayasuriya’s son, Dusty, who has suffered from muscular dystrophy, a crippling muscle condition that affects thousands of boys around the world. It is a growing issue of concern as one in every 3,500 boys in the world suffers from the fatal disease and there is yet no cure. Dusty is now in his twenties and he has endured the debilitating condition for most of his life. Having suffered for so many years in silence, Dusty’s mother Catherine decided to take it upon herself to turn the interminable pain into a positive and progressive movement towards awareness of the Duchenne disease. In her movement, Catherine began and international coalition for Duchenne awareness, through which she galvanized an annual mountain climb of Mount Kinabalu in her native land Borneo. The journey of the founding of the Coalition Duchenne is depicted beautifully in this lyrical documentary about one young man’s everyday uphill battle against a fatal disease and his mother’s exodus to lead a group up a mountain in Dusty’s honor and for the awareness of Duchenne. -Vanessa McMahon

I interviewed Catherine Jayasuriya during the 66th Cannes Film Festival while her film was playing at the nearby St. Tropez Film Festival. Here is what she had to say:

ME: Can you tell us a bit about Duchenne and why do only boys have it? When was it that you first realized your son had the disease?

CATH: Duchenne muscular dystrophy is a progressive muscle wasting disease. It is the most common fatal disease that affects children. It occurs in 1 in 3,500 male births, across all races, cultures and countries. It can happen to anyone. Duchenne is caused by a defect in the gene that codes for the protein dystrophin. Dystrophin is a vital protein that helps connect the muscle fiber to the cell membranes. Without dystrophin the muscle cells become unstable, are weakened and lose their functionality… Duchenne is an x-linked disease, which means that boys are affected, and rarely girls. Boys have an x and a y chromosome whereas girls have two x chromosomes and hence a ‘back up’ gene. Dusty was diagnosed with Duchenne when he was six years old. He started falling a lot, and had difficulty climbing stairs. Because Dusty was our first child, we really didn’t know the symptoms, and our doctors did not recognize it.

ME: Can you tell us what is Coalition Duchenne and how did you go about building this?

CATH: Coalition Duchenne is a non-profit charity I founded in 2010 to raise global awareness for Duchenne through fundraising events, to fund research to find treatments and a cure for Duchenne. Coalition Duchenne is focused on funding cardiac initiatives. We have recently entered into an agreement with Cedars Sinai to fund a study that could help boys with Duchenne by using cardiac stem cells.

ME: When did you first decide that you felt you had to make a documentary about Duchenne as part of the awareness of this disease?

CATH: I had always wanted to do a film of some sort to do with Duchenne, and I started writing a screenplay five years ago, but then after we organized our first Expedition Mt. Kinabalu in 2011, I decided that doing a documentary about the climb and Duchenne would really tell the Duchenne story and raise awareness. I just wanted the world to know what our boys with Duchenne go through. But I really wanted to convey an uplifting hopeful message. Entwining the doctors and scientists talking about Duchenne with the adventure of climbing the mountain provided a good vehicle.

ME: In the film Dusty is always smiling. He smiles so much he glows. Why is it that he seems happier than everyone else around him? Do you suppose that by having Duchenne he is grateful for every day he is alive? And also perhaps because he feels how much he is loved?

CATH: Dusty has always been a happy person from the day he was born. He just lights up a room because he has a positive energy about him. He was that way before we even knew about Duchenne, and once he started getting weaker, his positive attitude just shone through. We really went through Duchenne as a family, one day at a time, and we tried not to dwell on any of the negative aspects of the disease, and Dusty picked up on that. We turned every negative thing that happened into a positive opportunity and possibility. And that is sometimes difficult, as it has been a constant loss of Dusty’s physicality. We used a lot of humor in dealing with Duchenne, and we have a good laugh every day even when the going is tough. Dusty definitely feels the love from his family. His brother and sister are all best friends and they get along so well.

ME: In the film Dusty meets Obama. How did the president get to know about Dusty and did the president help at all with Coalition Duchenne?

CATH: In 2011, we all had the opportunity to privately meet President Obama, at the White House in the Oval office. This was Dusty’s wish through the Make-a wish Foundation. It was a wonderful experience, and we told the President all about Duchenne and our cause. The President later wrote a letter to Dusty saying that he carries Dusty’s story in his heart. We did invite him to climb Mt Kinabalu, and he did say he would love to do that one day!

ME: In the film, you climb a mountain in Borneo. Why this mountain? And why is climbing a mountain symbolic for Dusty's illness in this film?

CATH: Every year, we climb Mt Kinabalu, a 13,455 ft mountain in the Malaysian state of Sabah in Borneo. We climb to raise global awareness for Duchenne, and last year we had 62 climbers from 15 different countries. This year we have 150 spots and they are filling up fast. I grew up in Sabah, and my grandmother is Kadazandusun, an indigenous tribe of Sabah. Mt Kinabalu is a symbolic mountain for me as it has been a silent reminder of time passing. The mountain was like a loyal friend in my life, constant and unchanging. It was witness to all that was happening. Mt Kinabalu anchors me to Sabah, and it’s my home. I had always wanted to climb the mountain with my kids. When Dusty had the diagnosis of Duchenne, I knew that dream of climbing with him was shattered, so I decided that I would climb for him and all the other boys like him with Duchenne.

Continue reading (Incl. Pic) at: ‘Dusty’s Trail: Summit of Borneo’ (2013): Interview with Catherine Jayasuriya

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Kaamatan finale spotlights Sayau dance

A seldom-seen dance of the Tatana Dusun community called Sayau took centrestage to mark the finale of the month-long Kaamatan or Harvest Festival.

Normally performed during spiritual ceremonies for healing, the Sayau was played out for the audience for about eight minutes yesterday at the Hongkod Koisaan hall in Penampang.

The dance consisted of six women performing around a sole male dancer with graceful arm movements mimicking that of an eagle in flight.

They were dressed in traditional costumes of black with gold trimming.

The Tatana Dusun is a sub-tribe of the Kadazandusun community.

The dance was among a myriad cultural performances to close the celebrations marked by the harvesting of seven padi stalks by Sabah Yang di-Pertua Negri Tun Juhar Mahiruddin.

Accompanied by Deputy Chief Minister Tan Sri Joseph Pairin Kitingan, Juhar then placed the harvested padi stalks in a special container in a ceremony called Mongomotom Popoopi Paaidoid Tangkob.

Pairin is also the Huguan Siou or Kadazandusun paramount chief.

Earlier, a group of Kadazandusun bobohizan or traditional priestesses from the northern Kota Belud district headed by Amman Sirim Simbuna performed the magavau (appeasing the rice spirit) ceremony.

In his speech read out by Pairin, Chief Minister Datuk Seri Musa Aman said the thanksgiving ceremony was a reminder to Sabahans for the peace, stability and prosperity in the state.

He said these aspects did not come by themselves but rather from the sacrifices and struggles of the people and leaders over the years.

Continue reading (Incl. Pic) at: Kaamatan finale spotlights Sayau dance

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Immaculate crowned Unduk Ngadau 2013

PENAMPANG: Hotel receptionist Immaculate Lojuki of Kota Kinabalu was crowned Unduk Ngadau 2013 at the State-level Kaamatan Celebration at Hongkod Koisaan Hall here yesterday.

Ritchel Andreas of Ranau and Nillsey Debbie Sening of Tuaran were the first and second runners-up respectively.

Immaculate, who stands at 174cm, beat 39 other finalists to win RM87,800 worth of prizes, including a RM30,000 custom-made tiara.

“I did not expect to be at the top seven, but I am very happy after being announced as the winner. I am thankful for the support from my family, all their prayers were answered,” said the beauty queen who speaks English, Malay and Kadazan.

“Since I got the diploma scholarship, I have to arrange my schedule to further my studies. I might be doing it part-time because I am currently working at Shangri-la's Tanjung Aru Resort & Spa,” said the third child among four siblings, referring to the scholarship she won as part of the prizes.

With the title, Immaculate will play ‘Huminodun’ of the Kadazan Dusun Murut to promote Sabah tourism until the next Unduk Ngadau is chosen next year. She is also expected to carry out social works such as raising funds for charities during her year-long reign.

She was crowned by Toh Puan Norlidah R.M. Jasni, the wife of Head of State Tun Juhar Mahiruddin.

The title comes with a RM1,700 pewter trophy with gold trimming which was sponsored by Deputy Chief Minister Tan Sri Pairin Kitingan, a tiara and jewellery set worth RM38,800 from Diamoney Jewellery Holdings Sdn Bhd, diploma scholarship from Asian Tourism International College worth RM25,000, a cruise package for two inclusive of air tickets sponsored by Star Cruises worth RM13,000, cash and hamper worth RM6,600 from Nestle and a smartphone inclusive of one-year free internet service from DiGi Telecommunication Sdn Bhd worth RM1,850.

Immaculate also received beauty products from Marie Aesthetic’s Beauty Spa worth RM300, a hamper sponsored by Albert Oliver House of Dresses worth RM600, a sash and a bouquet from the organizing committee worth RM450.

Meanwhile, first runner-up Ritchel received a pewter trophy with gold trimming worth RM1,500 sponsored by Datuk Seri Panglima Dr Maximus Ongkili, a cruise package worth RM13,00, cash and hamper worth RM4,300, a smartphone inclusive of one-year free Internet service RM1,450, a jewellery set worth RM5,300, two hampers worth RM900, beauty products worth RM300 and a bouquet worth RM150.

Ritchel, who received the most votes in a Facebook voting contest, was also named Miss Facebook Favourite, a subsidiary title that comes with a RM500 cash prize and photo-shoot session worth RM500 sponsored by David Aramaitii Photography.

Continue reading (Incl. Pic) at: Immaculate crowned Unduk Ngadau 2013

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The secret behind the making of Gawai Dayak traditional offering — Tuak

KOTA SAMARAHAN: The neighbourhood in Lorong 8 Desa Ilmu, Kota Samarahan, some 30 kilometres from Kuching, is just like any other neighbourhood in town.

Yet, the area, which has a majority of people from the Iban community, offers uniqueness—all the residents in the area can produce their own tuak, Sarawak’s traditional rice wine.

For Cecilia Adam, 44, who has 10 years of experience in producing tuak, making her own tuak gives her a sense of satisfaction that cannot be derived from buying a bottle of tuak.

Cecilia, who had produced and sold tuak in the past when she followed her husband, Malin Kaya, an ex army personnel, during his posting in Kluang, Johor, now produces the heady drink only for her family.

She, however, does not decline if there is a request to purchase the tuak that she produces.

Tuak and Gawai Dayak

Having inherited the talent and recipe for making tuak from her mother and grandmother, Cecilia, who is originally from Sri Aman, said the drink is always served during the Gawai Dayak, a harvest festival celebrated with thanksgiving offerings for a bountiful year.

For this year’s festival, which will be celebrated from today, Cecilia has already stocked up on the drink, which she started brewing a month ago.

Tuak is basically made from fermented glutinous rice but how good it gets will depend on the method of preparation.

“The tuak should be prepared well ahead actually, sometimes two months before the festival. Fermentation is the first step, and in order to get good tuak, time must be given for the process,” she told Bernama.

Made with a mixture of glutinous rice, sugar and yeast, which are fermented for a long period, the art of preparing tuak is usually left to women, who are expected to follow the various dos and don’ts involved diligently in order to make the best tuak.

There are secrets too on how to make tuak, which are different from the rest. Cecilia shares one secret, which gives her tuak a unique taste.

“If the prepared tuak is stored in a liquor bottle that has been used, the tuak will be more tasty and unique,” she said.

Dos and Don’ts

However, it is not all that easy. Even with her vast experience, Cecilia admitted that there have been times when the tuak she produced turned out wrong and tasted sour.

“There are rules to follow when preparing tuak. Among them, women are not allowed to prepare the tuak when they are having their periods since it is believed that the tuak will turn out bad,” she said.

Cecilia added that another don’t is fermenting tuak in a container that has been used to store salt or salty food since this will make the tuak sour.

“Those who make tuak should also refrain from eating food or drinking beverages that are salty,” she explained.

Continue reading at: The secret behind the making of Gawai Dayak traditional offering — Tuak

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Heritage Legacy, riverside villages for vibrant Kuching

KUCHING: Sarawak Tourism Minister Datuk Amar Abang Johari Tun Openg said the government has a plan to improve the infrastructure in the state in efforts to attract more tourists.

He said among the plans were the building of the Heritage Legacy project that will cover the area from Museum until the old State Legislative Assembly building, where a “special fund” is to be applied.

“The state government has a plan to improve the infrastructure of the state to attract more tourists, and among them are heritage legacy and the development of villages along the Sarawak River in Petra Jaya area.

“Once, these developments take place, Kuching will be a more vibrant city,” Abang Johari pointed out at a farewell dinner to honour outgoing Malaysia Tourism Ministry Sarawak (Kementerian Pelancongan Malaysia Negeri Sarawak) director Esther Douglas Udam.

Abang Johari, who is also Housing Minister, stressed that tourism was an important sector for the economy for the state and country.

For this, he pointed out that cooperation between the state and federal agencies was important to develop state tourism, adding that he was glad that the state had worked closely with Malaysia Tourism and supported by private sector.

“We need a strong team to develop this industry (tourism) as what is expected by the government,” he said.

He also expressed gratitude to Esther for her diligence in managing tourism matters over these few years.

Continue reading (Incl. Pic) at: Heritage Legacy, riverside villages for vibrant Kuching

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