The executive officer, Ms. Virginia Tsai, founded the Taiwan MPS Society in May 1997. She wrote two books, which are entitled with “A Child with MPS Disease in My Family” and “We are Stuck Together– Dancing with Life”, published in May 1997 and April 2006, respectively. These books record unconditional love and precious experiences of caring not only her son, David, but also the many children with MPS disease in Taiwan. Ms. Tsai represented the Taiwan MPS Society to receive the donation of US$11,000 from Rotary International in December 1998. In March 2000, Ms. Tsai and the Taiwan MPS Society received awards from the Ministry of the Interior of Taiwan, which are “1999 Good Samaritan” and “1999 Best of Non-Profit Organization”, respectively. Ms. Tsai lost the best support, her husband Mr. Eddie Chou, in May 15, 2007. Ms.Tsai was taking a long journey recovering from the abyssal bereavement and continues to give her love to MPS children. In the memory of Mr. Eddie Chou, She founded “Eddie Chou Memorial Award” on May 15, 2008,which is used to encourage more medical personnel to devote themselves on caring and treating MPS children. Ms.Tsai and the Taiwan MPS Society founded and hosted the first Asia-Pacific MPS Conference in May 2008. She extends her love to MPS children in Taiwan to MPS children in Asia-Pacific region. Ms. Tsai will represent the Taiwan MPS Society and attend the 2008 International MPS Symposium held at Vancouver, Canada, in June 2008.She will pursue the opportunity to host the 2012 International MPS Symposium held in Taiwan.

首先我向今天參與亞太MPS會議的各國致意，這是台灣MPS SOCITEY第一次的主辦，希望能藉由這個機會，讓亞洲各國將MPS這個已是罕見疾病最不罕見的疾病，得到更進一步的認識與治療經驗分享。

Ladies and Gentlemen：
First of all, on behalf of the Taiwan MPS Society, I would like to give a warm welcome to the representatives of each country that joins us for today’s first Asia-Pacific MPS conference. This is the first time the Taiwan MPS Society has initiated and sponsored the Asia-Pacific MPS Conference. MPS is the rarest disease among all other diseases.

這次我們安排了台灣各大教學醫院專業醫師在MPS做了一系列詳盡的醫學報告，希望能和大家相互切磋學習。

However, I sincerely hope that we could use this conference to share our medical experiences in helping,treating, and reducing suffering for children with MPS disease in Taiwan with other countries.

For this conference, we have invited medical doctors from all the best teaching hospitals in Taiwan.They will present a series of reports based upon their MPS research, medical treatment, and care experiences. I profoundly believe that we could learn from one another through our exchanging and sharing of ideas.

而現在這個階段，就由我台灣MPS SOCIETY來和各位報告，我們11年來為台灣MPS 孩子所扮演的角色。

Now, I want to introduce how the Taiwan MPS Society was founded, what the role of the Taiwan MPS Society has played, and what the Taiwan MPS Society has done for children with MPS disease and their families.

在我的第二本書中，我的外國醫師好朋友WRAITH他曾為我的推薦序這樣寫著「Providing help and support for children and families with MPS disorders is a challenging but rewarding task. It requires help from a wide range of individuals including doctors, nurses, therapists and family. An increasingly important role is being played by parent support organizations who can provide friendship, information, advocacy and practical help.」「The Taiwanese MPS community benefit from a very active parent support group. Over the years I have come many Taiwanese MPS families and is has been a great pleasure for me to try and help the families and their physicians deal with these difficult disorders.」

My very good friend, Dr. Wraith, wrote a preface in my second book as follows: “Providing help and support for children and families with MPS disorders is a challenging but rewarding task. It requires help from a wide range of individuals including doctors, nurses, therapists and family. An increasingly important role is being played by parent support organizations who can provide friendship, information, advocacy and practical help.

The Taiwanese MPS community benefit from a very active parent support group. Over the years I have come many Taiwanese MPS families and it has been a great pleasure for me to try and help the families and their physicians deal with these difficult disorders.”

事實上，我曾因緣際會在英國3年，我的大兒子David（Hunter）得到Dr. WRAITH很好的醫療團隊照顧，與英國MPS SOCITEY全心全意的協助，因此讓我發願「如果外國人都願意無私的幫助我們，我為何不能回到台灣來幫助自己國家MPS的病童？」

I have lived in England for three years. During these three years, my first son, David, was diagnosed with Hunter. He received the best medical care from Dr. Wraith and his team as well as the unlimited assistances from the UK MPS Society. I was so touched by the unconditional help, love, and care given by the people of England,that I vowed to dedicate the rest of my life to serve children with the MPS disease as well as their families in Taiwan.

這11年來，我藉由曾經留在英國3年參加他們國家的各式各樣MPS活動經驗，讓我有很好的模式可遵循，於是我將這個寶貴的「醫師、治療師、護士與父母」必須相互緊密結合的觀念，真正落實在台灣發展，於是我現在真的可以很驕傲的說「我們真的做到了。」

Over the past eleven years, I have shared a concept I picked up from the UK MPS Society with the people of Taiwan. I learned that by combining the efforts of medical doctors, nurses, therapists, and social workers together into a single unit, we could have a better chance at combating MPS. I can proudly acknowledge that we owe most of our success leading up to this day by rooting this concept I mentioned above in Taiwan.

我十分願意藉這個機會向各位簡單扼要的報告，台灣MPS SOCITEY為何能得到政府的肯定、社會的認同、醫護人員的照護與父母們的支持，除了我們用「將心比心、感同身受」的理念去協助我們的父母與其孩子外，更重要的是我們盡其所能為病童爭取他們該有的生命權益。

I also would like to tersely present the successful story of the Taiwan MPS Society. How we are acknowledged by the Taiwanese government, recognized by the Taiwanese society, supported by medical personnel, and MPS families in Taiwan. Not only did we use the concept of “walking in someone else’s shoes” to assist parents and MPS children, but also, more importantly, we did whatever we could to fight for children with MPS disease who have the same right and dignity to live as healthy children.

台灣MPS SOCITEY每年有固定的3次聯誼會，為了顧及孩子行動不便，避免舟車勞頓，南北各有一場活動，而年中選在全國距離都較為方便的中部城鄉，舉辦2天1夜的旅遊。每次的旅遊病童都全程由義工們一對一的照顧，甚至如第三型較活潑好動的病童由兩個義工陪伴一個孩子。

Because many MPS children are handicapped and are not prone to long distance travel, the Taiwan MPS Society annually sponsors three carnivals located in the north, middle, and south of Taiwan. Carnivals held at the north and south ends of Taiwan are only one-day events. However, the carnival held at the middle of Taiwan is a two-day, one-night event.

During these events, we have a one-on-one policy. Each individual MPS child is accompanied and well taken care of by a volunteer. However, two volunteers are required to take care of an MPS child with Type III Disorder who may be hyperactive.

目的就是希望終年辛苦照顧MPS孩子的父母，能真正的放鬆心情，與其他的父母交換養護經驗。

The main reasons to have volunteers for the MPS children are as follows. First, we want the parents to be able to relax and enjoy themselves during the carnival. Second, we want the parents to have the opportunity to share and exchange the experiences that they have acquired while raising and taking care of their MPS children.Lastly, our carnival enables these families to be able to encourage and help one another to continue to have the strength to face each day with such courage and dedication.

每次這種過夜的旅遊活動結束後，義工們都說「我們終於知道MPS父母的辛苦了，我們也不過幫忙照顧兩天，結束後自己可能要休息一週才可以恢復，那這些MPS爸媽終年無休，真的是太辛苦偉大了。」

Whenever the two-day, one-night carnival event ended, our volunteers always say that,"We finally understand how parents with MPS children suffer. Although many of us will need to take one week to recover from the exhausting task of taking care of the MPS children during the event, these parents spend a whole year without a break. The parents are the true heroes with a spirit that has gone through multiple challenges but has always persevered.”

話雖如此，其實我們的義工是這些都已是11年資深義工了，從大學生時代開始到現在是攜伴一起加入行列，從未缺席，我們感動了他們，他們也感動了我們，所以我常常說「認識MPS，就會被我們黏在一起」。

Since they were college students eleven years ago, the volunteers of the Taiwan MPS Society have made their organization stronger by devoting their time to the society and never missing any of the events. After witnessing their absolute devotion, I have realized that once you join our society, we become like glue and bond tightly to one another.

最重要的是我們的經費來源，得到企業家的認同，我們不隨便募款，直到每年的活動，我們會提出我們需要的贊助經費，讓企業家知道他們的善款真正落實用在孩子身上，同時也邀請他們一起參加我們的活動，讓他們親身體驗到「助人為快樂之本」的意義。

Without the financial support from many enterprises and non-profit organizations, we would have never been able to sponsor our annual carnivals. While conducting our fund raising campaign, we plan out our budget and itemize every single spending to ensure financial control. Because we want to let our donors understand that every dollar will be used for MPS children, we invite all of our sponsors to attend the carnivals and see all the progress we had accomplished with their generous funding.

另外，每年我們會將我們的簡介、會刊分別寄送到全台灣376個衛生所與各大教學醫院，作為推動廣為宣導。我們也將已是加入我們會員的父母，當他們希望再有一個健康的寶寶時，我們會全程協助安排專業醫師檢驗，以避免下一代重蹈覆轍。

In addition, we mailed our brochures and publications to 376 Public Health Centers as well as to all the teaching hospitals in Taiwan in order to update MPS information collected from around the world.

In order to avoid the newborn babies carrying MPS genes, we also arranged special prenatal screenings conducted by doctors with MPS expertise for our member parents carrying the MPS genes who wish to have a health baby.

11年來台灣MPS SOCITEY從零開始，累積了大家的愛心往前行，我們雖然對這個疾病感到無奈，但至少它已不是隱藏在背後不為人知的一種可怕的疾病。我常常和我們的父母共勉一句話「把握現在、活在當下」，現在我也將這句話與亞洲各國相互勉勵。

Taiwan MPS Society was established from ground zero eleven years ago. We are moving forward due to so many great supporters. Although we sometimes feel totally hopeless facing MPS disease, I want to encourage you with “Live life one day at a time”, which is always used to encourage my member parents.

再度謝謝大家熱情的參與，如有需要相互支援商討，請不要猶豫也不要客氣，協會在這裡，醫師也在這裡，大家一起加油努力來幫助這些孩子吧！這是我們的榮幸！

Once again, thank you for attending this conference. If you need more information or consultations, please let us know. It is our great honor to work together and help these lovely little angels fight against the MPS disease.