Homepage
About Angelman Syndrome
Events
Useful Links
Publications & Media
Asher was diagnosed with Angelman syndrome when he was one and a half years old, which brought about a huge change in the lives of his parents, Fred and Stephanie. Faced with the fact that the child's intelligence may always stagnate at the age of 3-4, the two endured heartbreaking pain, but their son's strong personality led the parents to fear no discrimination, dare to disclose the condition, and work hard to find the hope of treatment. Although it is predicted that disclosing their son's condition will be subject to a lot of public pressure from the outside world, they still firmly believe that only by deepening society's understanding of "Angelman Syndrome" can they get more support and tolerance.
Fred Cheng Stephanie Ho He Yanshi
Angel with us I 02-07-2024
Vivian, who was doing research in medical school, and Michael, a psychological counselor, happily welcomed the birth of their second child, but discovered that their son Zavier was suffering from a rare disease with a probability of 1/15,000 - "Angelman Syndrome". In a state of stagnant brain development and unable to speak, this 6-year-old little angel made the two of them understand what is the most precious thing in life.
In fact, being happy in life is very simple.
the most precious thing,
Probably the most detailed and simple one around.
- Michael (Zavier’s dad)
Angel with us I 01-06-2024
Angelman syndrome has attracted widespread attention recently. Thank you Fred and Stephanie for joining the little angel family and adding care and positive energy to us!
The entire Angel family is united. Thank you to Phoebe and Yinhao for their selfless sharing. The visit was wonderful and touching. You will miss it...
HOY TV I 05-07-2024
Founder of HKASF, Joson Chan interview with METRO Radio, share the happiness and positive attitude to all of our Angelman Families.
METRO I 13-06-2024
We are pleasured to have a comprehensive article from Xylom USA to introduce Angelman Syndrome for celebrating our World Rare Disease Day 2024!
A Moonshot to Cure Angelman Syndrome is Reachable. Where are the People Counting on It?
Xylom | 01-03-2024
Angelman parent, founder of Hong Kong Angelman Syndrome Foundation, Joson Chan met Fiona on Radio 2 RTHK to make more awareness and introduction of Angelman Syndrome.
RTHK I 24-12-2023
For celebrating the International Angelman Day 2023. Angelman parent Vivian Tam met Noreen Mir on Radio 3 RTHK to make more awareness and introduction of Angelman Syndrome.
13-02-2023
2022 marks the 180th Anniversary of Hong Kong Marine Police, today (19/11) we celebrated with the community
19-11-2022
HKASF's "OneClickCare" project is dedicated to improving the quality of life of the disabled or people with needs and their families.
We dare to challenge, take the courage to undertake, and hope to lead the patients and families into the community through different activities or projects. Perhaps we have encountered discrimination and even being criticized with cold language which certainly won’t deteriorate our love and determination.
We are grateful to the columnist Tse yi-chu for the coverage of "Priority Tables" in AM730. The writer's exquisite and delicate style, being simple and concise, brought the content and essence of the "priority table" in a few words. Her way of consideration using her sincere and understanding heart is highly appreciated and is much powerful than thousand words.
It is right - "Priority Tables" concept does not just merely lie on the tables, the concern spreads to the love given by the community, letting us to enjoy meals with equal communion. The writer got it, how’s about you?
Please continue to support the "Caring Tables"!
AM730 | 28-6-2018
Thanks to the invitation of Creation TV, we have the opportunity to share with you the story of "Angel Dad". We hope that everyone can learn "love" in the same way as Joson does. Indeed, as long as there is love, everything can be beautiful!
Joson: "The experience of taking care of Chloe and Cherry let me cherish and love my mate and children. I love my family and same fellows..."
Creation TV - 17-6-2018
For the AS Walk that takes place once a year, the committee of HKASF has started preparations as early as half a year ago – the site, the idea, sponsorship etc. Nothing comes easy and we always got them through a hard way.
With luck, we got acquaintance with Rochelle, The Lifewire, and its team. To support us, not only the financial contribution we got from them, they indeed participated actively in the Walk, even acted as volunteers. In particular, they did a special interview for the "Angelman Syndrome" and raised funds for HKASF. The story of Chloe, the little angel, will be appeared on the new edition of Lifewire magazine, and will be given out free in the "Little Angels’ Fortune Bag"!
Lifewire | 30/5/2018
Recently, HKASF received an invitation from Meeeepmore to introduce "Angelman Syndrome", "Hong Kong Angelman Syndrome Foundation" and our focussed project "OneClickCare" in the health program "I Just Want to be Healthy".
Starting from 29/5, for three consecutive days, the program has Andy, the Director (Family Support) of HKASF to tell the details. Don’t miss it!
Meeeepmore | 29/5/2018
"Regular mother, extraordinary mother"
HKASF pays tribute to all mothers!
Since the establishment of the HKASF, we have been working hard to gather all families that have angels. In order to let the public to be more aware and understanding of us, we often work with different media to promote "Angelman Syndrome"….
Mother's Day is approaching, and we are honored to be invited by AM730 to receive an interview with the mother of a patient having rare disease as topic.
On May 11th, the free newspaper “AM 730” has Linus’s mother interview.
Wish everyone a happy Mother’s Day!
AM730 | 11-5-2018
Restaurant priority table
The words "priority" may make you feel worry, but "priority table" is another matter. Participating in the "Priority Table" restaurant will have seats for handicapped or specially-needed people and their families, extend dining time and provide larger tables for the pleasure of children with special needs.
(Interview: Zhang Jingwen)
Executive Producer: Tong Man-ming
Moderator: Peng Dezhang Huang Ya-wen
20/02/2018
On the afternoon of February 8, Joson Chan (convener of OneClickCare App and the founder of Hong Kong Angelman Syndrome Foundation) together with Andy Chan, Director (Family Support) of the Hong Kong Angelman Syndrome Foundation and Commissioner of “Priority Tables” program, appeared on RTHK-HK first channel and RTHK 31 health programs, "精靈一點". The program was hosted by moderators Liu Mei-juan and Shen Da-yuan. An on-site interview with the two guests was held, elaborating on the story of the Angelman families and the introduction of "OneClickCare" App. The "priority tables" conception and execution were explained by the two guests to help the viewers to understand how the families of the disabled can be able to enjoy life and feel the joy of living.
RTHK Channel one and Television 31 l 8/2/2018
The family with an Angelman Syndrome child initiated the “caring tables” which the netizens rolled their eyes at. “All we want is just a satisfying meal!”
In recent years, the word “caring”becomes horrifying. There are “caring seats” (priority seats) everywhere on the bus ,the mini bus and MTR. They encourage everyone to give up his seat for the disabled, the pregnant and anyone who needs the seat. If the people who sit in the seat looks young and strong, it will be uploaded on the internet for a public trial. However, the “caring table”in a restaurant is another story.
To most of people, the most difficult thing to dine out is too many choices in a restaurant. Since there are Chinese, Western, Japanese, French and Italian food which is free to choose that could be dazzled. However, the families with the disabled at home, normally have only 2 to 3 choices. With an 8 year-old daughter suffered with the genetic disease “Angelman Syndrome, it is not easy either for Joson to dine out. “There is some degrees of difficulty to bring Wing Ning out to eat. If we dine out, it has to be the afternoon tea or eat late and leave early.”Encountering the birthday or the festivals, most of the time we cannot enjoy the meal with early leaving. Other diners’ mean words are common occurrence. They said “Do not take it out if you have the problematic child la...are you showing off to the world?”The outsiders do not know my daughter, Wing Ning’s condition, so the father, Joson never blamed them, nor asked them to tolerate.”Everyone thought we want people to adapt to us, actually, we also want to be like a normal family dining out happily, that’s all. Although we have this kind of child at home, I think we cannot lose this opportunity because of that.
In the middle of last year, Joson came up with an idea of “caring table”. “The notion of the foundation is not only to help the families with children suffered with Angelman Syndrome, we also want to help the whole section of the injured and the rehabilitated.” Andy, who is also a father with an Angelman Syndrome patient at home, the minister of the foundation, also a “comrade”to Joson. He frankly said “Actually, we could consume like others, just because of with the special-need children, we are afraid of trouble and disturbing others, our desire to consume is reduced.” He spent half year collecting the data and doing the research, asking different needs of the families with the injured and rehabilitated, discussing with the catering association. Finally, they concluded the services they provided for the “caring table”: bigger tables, the injured and the rehabilitated could be kept away from the boiling water in case of any accident, longer time to dine in the restaurants to make the families have enough time to have their meals, reserving the corner-seats to prevent any disturbance to other diners, which could happen from the families. Actually, there is nothing involved giving up seats. Everyone does not need to worry about standing up and giving out his seat when dining which might be on public trial. In fact if the restaurants provides one of the service becomes the restaurants with “caring tables”. Joson laughed and said “We do not have many requests, but it really helps us a lot! I wish no one thinks we are trouble makers.”
Now there are about 30 restaurants joined the project. Most of them are the social enterprises which already hired the handicapped. But there are some exceptional, “Boat Dweller Steam Hot Pot Specialist” provided the service of bigger tables. The CEO TAN Wei Hong said : Going out to eat is absolutely the basic human right la! As a human being, everyone wants to enjoy his meal. We shouldn’t ignore the guests like this.”However, business is business, are they not afraid that the guests in the caring table will scare other diners and receive complaints? “We will explain to the guests that the guests in the caring table are ignored by the society for a long time. We need to support them. Basically, they will not affect other customers because they are in the corner already.” He hopes that the peer can support them together to reach the win-win for both sides. “Everybody has the business to do and they do not need to hide at home.” Joson revealed “They will expand the net of the caring table. There are more series of caring projects coming out contributing to the harmony of the rehabilitated and the normal.”
Apple Daily l 15-1-2018
The daughter with Angelman Syndrome only possesses 2 year-old IQ. The parents’ difficult choice to give birth to the second child.
As parents, from the pregnancy to the first cry of the baby, all look forward with excitement and expectation. Joe now is the mother with two daughters are of no exception. Thinking back to 8 years ago with the elder daughter, Wing Ning, Joe’s corners of her mouth slid upwards and said ”of course we were with full of expectations: Choosing which kindergarten? What she would do after growing up? What kind of person she would be? Would she get married and have children?...”However, everything seemed to be an illusion when Wing Ning was going to 2 years old, because at the same time, Wing Ning was diagnosed with the rare genetic disease ”Angelman Syndrome”. All her life is with only 2 year-old IQ. At that time was also Joe’s second month of her pregnancy.
Since Wing Ning was born, she likes to laugh especially, sometimes she even woke up by her own laughter. Until she was nearly 1 year-old, Joe and her husband, Joson found she had a strabismus (abnormal alignment of the eyes), could not sit straight. She also went through MRI , collected cerebrospinal fluid from the brain but nothing could be found. “I just felt that it was really hard to be a mom, nothing was successful. ”Joe said. When Wing Ning was nearly two year-old, they found Joe was pregnant with the second child accidentally, so the process to test the DNA became faster. Only spent a few minutes with Wing Ning, the doctor already knew what happened and told them that Wing Ning was born with Angelman Syndrome. Joe still remembered she was totally blank at that moment, did not know what to respond, just asked the doctor ”That means she is only like a 2 year-old child even she is 30 or 40 years old? What are you talking about? ”Knowing that the patient’s life span could be the same as the ” normal’s”, Joe’s mood was down in the dumps. From the beginning of her imagination of the daughter’s household, till that became her search for the dormitory. "I called the dormitory if I could go over to visit, surely they rejected immediately and said: your daughter is only a baby! I had been worried and thinking of the distant future.
Heart-aching and struggling for the second child
I asked a question ”Which one in the family I should inform first? ”The moment I reminded them of the definite diagnosis, Joe was nearly in tears and said ”I couldn’t tell my mom face to face. I called her, she sounded calm but stammered, I knew she was shedding tears, because it’s hard for myself, how could you break the old one’s heart? “ The daughter was diagnosed the incurable disease. Her heart is not lesser aching than the time when she lost her father. Next to Joe, Joson who also talked to his mom immediately, kept silent for a long time, could not help but say ”She worried about me for over 30 years, until now my daughter was born, she has to worry about her...I feel shameful and guilty of owing to my mom. ”The incidence of Angelman Syndrome is around 0.0067%. There are 3 to 5 cases in Hong Kong every year. Although it is rare, the genetic disease makes the parents much exhausted physically and mentally. They had to think about if they could keep the second infant.
They let each other have 3 days to calm down to think of the answer on the paper and exchange. ”The answers were different, because Wing Ning only liked to attach Daddy, I could not help him nearby. As long as I touched her, she push me away. I was so depressed at that time. ”Joe said. She thought of giving up on Wing Ning because her husband was really exhausted. Every night she saw Joson could sleep only for one or two hours out of Wing Ning’s over excitement. Most of the time she could count on him only to take care of Wing Ning. However, Joson did not agree ”How could I not to feel sad and hurt, but at least someone has to be responsible for the family. No matter what is the health condition of the daughter, you should pour out your unconditional love to take care of her and love her. The family members are not optional. Even she has this severe disease, couldn’t it be worse if she were not besides me? ”With Joson’s support and company, Joe walked out the shadow step by step. She started to open her heart and share their experience with others. Moreover, they established The Hong Kong Angelman Syndrome Foundation to help other families. They even gave birth the second daughter, Cherry. Now the family of four are happy together as a whole.
The younger daughter is kind and with a loving heart. She imitated the elder sister not to talk much.
They described that now the 6 year-old Cherry is inborn compassionate. “Maybe because of the elder sister, we could see that she has a kind heart. ”Spent a half day with them, I found out they especially took care of Wing Ning, such as fed her a cake, held her with the arms etc…. Sometimes when Cherry saw Wing Ning had this special care, she could not help showing the face, “Why the sis can have this, but I can’t? ”From time to time, she made a funny face to the camera to get the attention. “Are you afraid Cherry would be jealous of Wing Ning?”I said. “Inevitably, it is hard to take care of Wing Ning’s basic needs, but the energy of taking care of Cherry is not lesser than Wing NIng. After all she is only a child. ”Cherry did not like to talk with her classmates at first. It was related to Wing Ning nearly zero ability to the language. ”Wing Ning is the person she copied. She saw her elder sister did not talk. Gradually, she thought she did not need to talk. Now is getting better, but it still takes a while to let her talk and get along with others.”
At the end of the interview, I asked them where the name “Wing Ning” came from. Joson said ”it was called by my grandfather. The meaning is blessing, longevity, health and peace. He hopes she is healthy and happy. ”Even the expectation failed in the beginning, Wing Ning has never pronounced “BA BA"(father) correctly, her appearance is never a regret. “She changed my family’s whole life. ”They know one day they will leave the world, so they always want to prepare for Wing Ning.”We think the true thing can help her is not how much money you can save for her. We want to be ready for the first one to stand out for the whole section of the similar families. ”Besides handling the HKASF( Hong Kong Angelman Syndrome) after work, they started up a platform called ”One Click Care Hong Kong” last year to support different patients. Moreover, they cooperated with other restaurants to promote the service called “caring table” They hope the families with disabled members can also enjoy a meal out in the society.
http://s.nextmedia.com/realtime/a.php…
One Click Care Hong Kong
Journalist: Li Wei Hong
Photo: Hui Xin Yu
Jan 15
An interview with Ming Pao Sunday People, released on November 12, included a presentation by Joson Chan, our founder and a keynote address on "Priority Tables", a key project of One Click Care! The origin and aim of priority tables were brought out and a new milestone of communion is going to be achieved!
Postscript: A 10-year-old child, for the first time imitated Wing-ling’s stretching grimace! Although he was just a child, frankly, I was a bit upset at that moment in my heart. As I was going to start a lesson called “Admission and Discrimination”, I asked him kindly, "Why did you do that?" He replied innocently in simple words: " I stretched my tongue, she will be very happy. I want to play with her and make her happy! " . At that moment my heart suddenly warmed up!
Communion, needs love!
Differently-abled (not disabled)
Though we may be a bit inconvenient, but we will not cause inconvenience to the community. Would you like to move one step forward to accept people of different abilities?
Please call for restaurants around, join the Priority Tables action!
Ming Pao Report : Father strives hard for priority tables, to take angels for “Bo Lo” bread
In the center of the western restaurant, sit with a normal family of 3. They soon became the attention of the whole restaurant. The customers were looking at them with anger. The waiter came to remind them to leave. Even ordered the meals, they still had to take away.
CHEN, Wing Ning is almost 8 year-old with Angelman Syndrome. She does not know how to express herself. Every time she feels pressure, she will throw a tantrum. Once they were out for dining, the others around them shouting “Don’t go out with the sick!” . She rarely went out for dining during holidays to avoid people, she never went to a “Cha Tsan Teng” (Local restaurants in Hong Kong).
To let his daughter Wing Ning and all the special needed taste the fresh-baked “Bo Lo You” ( bread with butter) and Iced drink with red beans and milk ( local food in Hong Kong), Joson spent half a year to invent an app on the mobile which can reserve a “caring table” online. He said everyone has the human right and freedom to go out, “How come you tell me not to take my daughter to go out? I even want her to go out more often. If not so, how can she integrate into the society?
In December 2009, Joson and his wife Joe welcomed the first born in the family, Wing Ning cried out loud at birth but when Joson held her on his arms, they looked at each other for 3 seconds, Wing Ning stopped crying and rested in her father’s chest peacefully looked at her father could not help stop the emotional tears. Joson said, it was hard to describe my emotion. I just kept saying in my heart “this is really my daughter, my angel!” .
Angelman Syndrome : over-excited, laughing and difficult to be self-managed.
The daughter is like an angel at home. The whole family are so happy. However, when Wing Ning was half year-old, assessed with slow development, at 20 month-old, was diagnosed chromosome defect with “Angelman Syndrome”. The patient will have problems with limbs, slow development in her language, sleeping disorder, and laughing too much. The doctor said, “ your daughter cannot manage herself, cannot express herself, the whole life will be like a child.”
Joe had emotional breakdown at the moment. She could not help but crying. Joson oppressed his emotion and comforted his wife. He said” The most important thing is the whole family is here without missing one.” After that, Joson took care of his daughter most of the time. Whenever Wing Ning had a fever with screaming and shouting, he comforted her by himself and took a shower for her to lower her body temperature. Once, his daughter had a seizure and shocked. Joson held his daughter into his arm running around in the shopping mall to find a clinic and asked for help.
Joson said, many accident happened, my wife could not handle, because the daughter attaches to him a lot, she wants to hold him when feeling insecure. “ Wing Ning and I have some chemical, when she’s crying, as long as I hold her in my arms, for 3 seconds, she would stop crying, when I return home without even opening the door, hearing the sound of the key turned, she would shout “Ba ba! Ba ba!”, she would not do this if Mom opened the door, haaa!!”
Speaking of Wing Ning, around 40 year-old who works in the disciplined services laughed like a fool. Joson said, my wife is jealous about our interaction. Sometimes my wife talked to my daughter with a smile” Do you make a mistake? I am the one who delivered you, not daddy.” My daughter might not understand, but the whole room burst into laughter.
The old kidult, now App inventor.
Before as a father, Joson was like a child who could not grow up. Wherever there is clubbing, gathering, mahjongg, singing Karaoke, here came Joson. The couple loved to travel, they had three trips a year. Joson said, they did not have much savings before.” Our elderly always said we did not have any plan.”
The old “no plan” Joson, now besides as the founder of Hong Kong Angelman Syndrome, he is also the leader of “One Click Care Hong Kong” App. There are 3 functions in this app including, discussion forum, Q and A online, and “priority table”, which are tailor-made for the handicapped, special-need and their families.
Throwing chopsticks during Yum Cha, threw out by the owner
Although Wing Ning has only 2 year-old intelligence, she likes to go out a lot. Every time she explores new things, she is so happy that she will clap hands and dance around. Under the pressure, she will scream and shout. Joson said once he took her to Yum Cha in a restaurant, she just took up the chopstick and threw to the other customer. Once he took her to the western style restaurant, she was shouting and screaming because she did not like the table and chairs are too close to one another. The other customers shouted at them with anger “Don’t go out with the sick child!” . The waiter also came to ask us to leave, even our meals were ordered, we still need to take away.
Visiting restaurants and legislators to promote the “priority table”
During every holiday, Wing Ning almost eats at home, even she is able to go out, she has to eat lunch after 2pm, dinner before 5pm. She never has the chance to eat “hot pot” in a restaurant, never has the experience to taste the “bread with butter” and the “iced drink with red beans and milk”. Joson all bear these in mind. About half an year ago, he started to have appointments with legislators, visit all kinds of restaurants, contact IT companies. I could not sleep well at night for promoting the service of the “priority table”.
Joson said, “nowadays we have “priority seat”, why we cannot have a big “priority table” for the people who are in need? When they grow up, they can also enjoy the atmosphere of the holidays. Actually, everyone has his human right and freedom to go out. When you tell my daughter not to go out, I even want her go out more often!”
When the children are born, the parents always have a lot of expectations from them. The only thing Joson wants is to let Wing Ning become a happy child. Looking at his daughter’s happy face to see a new thing motivates him a lot. He said” although my daughter slows in development, also annoyed by the seizure, but the life span is as same as normal people. As the parents, we will grow old one day, might not accompany our children for a long time. The thing he is doing now is to hope that they have less obstacles in the future.
Flinging the cups and plates, screaming and shouting at ease were belong to children, but when people grow up, they forget the past. Tolerate more, care more, why becoming others’ obstacles in their ways?
【Sunday People】
【Father strives hard for priority tables, to take angels for “Bo Lo” bread】
http://bit.ly/2zufrua
Ming Pao | 12-11-2017
Because of Wing Ning, we realize that actually “the sick” come to the rich, the poor, the able, and the unable. It could happen in your family anytime. I appreciate the people and the things happened made me mature, let me understand all the challenges are kind of trials to me. They taught me how to be humble, cherishing, and grateful. Since the “Angelman Syndrome” patients are everywhere, we determined to set up Hong Kong Angelman Syndrome Foundation (HKASF) to search the lost “Angel” family in order to share and learn one another. We appreciate everyone’s contribute to HKASF which succeeded many “the first-time experiences” for the little “Angels” through all the Angel family’s wonderful ideas. We also felt the importance not only help ourselves but also help others. Because of this faith, we can move one step forward to set up a website called “One Click Care HK”. May you and I have the same mind and fight for the “Mission”.
We are thankful for the interview from the Hong Kong Economic Topic.
The Parents of the Angelman Syndrome Child: Children are the gifts from God. (Video Clip) Hong Kong Economic Topic- Topick Family
When a baby is born, every parent’s expectation is to see him grow with health. If the child born with a rare disease and suffered with severe mental retardation, it will impact dramatically to the child’s parents.
Joson and his wife, Joe’s first child Chloe (7 and a half year-old) suffers Angelman Syndrome which is a rare genetic disease. There is a problem in the 15th chromosome causing the lack of brain that is diagnosed as middle to severe mental retardation.
Angelman syndrome is a complex genetic disorder that primarily affects the nervous system. Characteristic features of this condition include delayed development, intellectual disability, severe speech impairment, and problems with movement and balance (ataxia). Symptoms include a small head and a specific facial appearance, severe intellectual disability, developmental disability, speech problems, balance and movement problems, seizures, and sleep problems. Children are usually happy in nature and have a particular interest in water. The symptoms generally become noticeable by one year of age. The special part is that the patient often show the happy face like an angel smiling so it is called “Angelman Syndrome”.
Get Used to the strange look from others
Joson said his wife and he had a body-check before getting married. During his wife’s pregnancy, every check-up was normal. The deliverance is smooth and successful. When Chloe was half year-old, she was discovered by a doctor that she was with slow development and referred to different specialists to do more detailed check. The result indicated that she cannot achieve the standard level in many items. When Chloe reached to 20 months old, after DNA test, she was diagnosed with Angelman Syndrome by the doctor.
Chloe would have sudden seizures. She also had had a fever up to 40C before, plus with the sleeping disorder, every night she cannot sleep consecutively, it is not easy to take care of her, but the couple accumulate quite a lot experience, finally we can handle it till now, Joson said. When Chloe is a baby, the situation is not so challenging. However, when she was growing up, her development was getting slower and slower than others. The whole family had to suffer from the strange look from others.
Chloe’s IQ stays at age of 2. The appearance and behaviour are different from others which easily drew attention. Joson said Chloe’s character is a bit stubborn. For example, obviously she knows how to walk, but asking for hold her in the arms to walk. If he refused, she kicked off the shoes, crawling from the bottom of her dad like a koala, up till his body tightly tied up by his daughter. It is hard to avoid others’ whisper when they saw the scene.
Once the people on the street told them: “You don’t know to teach the kid!” At first, they felt sad, gradually, they get used to it. If the time is allowed, they will try to explain Chloe’s situation to them with peaceful minds.
Looking back, the moment when Joson heard his daughter got Angelman Syndrome, he felt so depressed. After that, he figured it out that as her parent who cannot accept this defect, how can he ask others to accept his daughter? Joe also looks at the bright side, Chloe changed drastically their lives, she said, before I did not understand, facing the difficulties, I would ask myself “ Why this happened with a critical attitude and avoid?” But now I won’t, because I deeply believe everyone has his burden and pressure.
Accompanying his daughter to experience the life
Joson describes, the patients with Angelman Syndrome have mid to severe mental retardation, but their cognitive ability is better than their communicative one, they can understand other people’s message. It is a good thing from the carer’s perspective. In order to let Chloe have a normal life, the whole family will travel, visit the zoo and the aquarium. Chloe was so excited to see the lovely animals, trying to chase a small goat. Of course, they encountered some embarrassing moments while travelling. The attention was on Chloe smashed the tableware at a restaurant. Sit on the airplane, she refused to buckle up her seat belt. We as parents tried everything, nicely and strictly, to handle the situation. During the time, it was inevitably to disturb other passengers. Joson said directly: “It is not easy to travel with Chloe, but noticing her improvement in the cognitive ability, we will definitely bring her to explore more of the life.
The Happy Family with their newborn daughter
After a while, Joson and Joe had their younger daughter Cherry who is completely normal. When Joe mentioned back then she was worried about her pregnancy. Her mind is like a battlefield. She said” I need to take good care of my older daughter wholeheartedly, but I cannot give up the life in my belly. She worried if she can handle the two children in the future. Finally, the little daughter came out, grew up gradually, and brought a lot of positive energy to the family. Just as Joson said that the family of four cannot miss anyone.
Cherry is influenced by her sister, the two sisters grow up together since little. They spend most of time together. The younger one thinks her elder sister is the one to imitate. She likes to compare herself with her elder sister. Once the younger one was not willing to do a lot of things. She asked “Why you hold sis on your arms but not holding me?” Why sis did not need to eat with her own hands?” Until she went to school, knew more other people, realized that her sister is different from others, gradually she knows how to get along with her sister.
Joson added, children are gifts from God. No matter if they are healthy, or the family are poor or wealthy, all need to accept their children. They taught Cherry to accept Dad, Mom and the sister, also taught her how to accept others. Joson truly believes that Cherry has more compassion than other children at the same age of hers.
Hong Kong Angelman Syndrome Foundation Established
Joson said, the birth of Chloe is not a regret, but stimulate their unexpected potential. He believes it is a “mission” to make them to serve the “Angel” family today, furthermore, for the physically handicapped in the society.
They are grateful that they have family and friends to support and accompany with them. When they face the most difficult time in their life, they also want to know the same situation in other families. Therefore, they set up “Hong Kong Angelman Syndrome Foundation” and the facebook page - Hong Kong Angelman Syndrome Foundation, to strengthen the connection with the “Angel” families. He believes besides his own little “angel”, other little “angels’” families can be benefited from the foundation.
The couple often take their two daughters to visit other “Angel Families”. From that, they observe Chloe was normally shay and scared of strangers, but arriving at others’ home, she felt like coming back her own home. She will automatically slept on other “angel’s” belly. It is really interesting to look at the scene. Now Chloe already goes to school, her character is calm. She got praises from the teacher. She becomes more behaved and knows how to eat and walk by herself.
We are not afraid to die.
Since gathered the” Angel Families”, every family learned and gained more information about the nature of Angelman Syndrome. This is quite important, because doing so can enhance their training to make more “angels” have progress.
Listened to the sharing from the “angels’” parents, I learned a lot. Some parents already thought of many ways to teach the little “angels” while others can have more information to prevent some invalid ways to teach them.
Because of Chloe, Joson experienced that men’s ability is limited. He expects other “Angel’s families” can connect closely to one another to become a big family, instead of an independent individual. When one of the family has a problem, all others can gather, support and care for them. As their parents, we do not need to worry about the future, because the other families are still here to protect every little “angel”.
In addition, HKASF set up a website called “One Click Care HK” which is the first platform for the physically handicapped family in Hong Kong to gather the data from different patients. The association hold the movement of “caring tables” in HK to promote spacious place for the handicapped or the special needed in a restaurant and also the longer time for dining at the “caring table”.
Interviewing place provided by Amaroni’s
Reported by the TOPick journalist: Ho Bo Wah
The whole article:
https://topick.hket.com/article/1941161
Short video from youtube : https://youtu.be/Yo7KvtWrA7g
If you want to know more about us, welcome to our website:
www.hkasf.org
www.OneClickCareHK.com
Hong Kong Economic Times | 7-11-2017
On Sunday, August 3, 2017, the Sunday Kiss
The article mentioned that Dr. Cheung is a superman father at home. Actually, Indeed Dr. Cheung is a superman father in the social welfare sector as well, fighting for the well-being of the “sons and daughters” in the community.
Let me experience the spirit of Cheung's generous love and see how we can find the role and the mission in an afflicted world!
Special thanks for the interview which also touched on the HKASF's key project "One Click Care"!
Details of the project : the latest announcement of the One Click Care Website
Oriental Sunday | 03-08-2017
Hong Kong Angelman Syndrome Foundation (HKASF) was invited by aPM to attend "Father's Day Sharing and Courtesy Ceremony" event on Father's Day. Andy, as Family Support Director of HKASF and father of Linus, appeared as a guest to share the bits of caring of Linus, and elaborated on the obstacles and challenges faced by the Angels’ parents.
18-06-2017
One Click Care – serve families of special needs
Joson Chan, founder of the Hong Kong Angelman Syndrome Foundation, and Miss Margaret Chung, founder of the Beyond Fund, plan to carry out a mobile application program named “One Click Care”, which provides useful information and services to families with special needs.
Apple Daily | 30-05-2017
[Apple Daily Charitable Foundation] Charity Activity of sending Chinese dumpling to Show Care and Love at Dragon Boat Festival
In late May, HKASF and “One Volunteer Team” of Apple Daily Charitable Foundation organized a charity activity of sending Chinese dumplings to show care and love to The Mental Health Association of Hong Kong - Cornwall School. A happy afternoon was spent with the students. We participated in group games with the students and distributed the Chinese dumplings after the games. All of us played joyfully with the students to celebrate the Dragon Boat Festival!
Apple Daily | 30-05-2017
Special Report of i-CABLE TV– Finance Information Station 「至fit男女」
[Smiles from small angels affect people around; Courage out into the community for communion]
Outdoor activity is a big challenge for Angelman syndrome patients with retardation of both mental and physical abilities. However, they visited the theme park on that day with their families, breaking their normal daily life frame.
Angel families do not scared of how others look at them, they just lead themselves into the community, so that the public may have a deeper understanding of the disease.
Program Review :
Program review
Cable TV | 20-03-2017
RTHK Radio 5 "有你同行"
HKASF has always been committed to promoting Angelman Syndrome through different channels and hopes that the community will have a better understanding of this rare disease. We were fortunate to be invited by RTHK again to share with audience the information of Angelman Syndrome and bit about angel families through the atmospheric radio waves. In addition to the live show, we had phone in session to chat with the representatives from HKASF.
RTHK5 | 16-12-2016
School of Journalism and Communication of The Chinese University of Hong Kong x HKASF - Special Report "Angels that Never Grow Up"
Since its inception, HKASF is very pleased to learn that the Foundation received much attention from different sectors of the community, and feel excited to have opportunity to work with students and young people.
As early as the beginning of November, HKASF received an invitation from the third year of the School of Journalism and Communication of The Chinese University of Hong Kong. The students hoped to have interviews with the angels of ages from 13 to 30 and their families in order to grasp the living of angels and the difficulties encountered by their families in taking care of the angels.
CUHK | 13-12-2016
43rd NHK Japan Prize 2016
Recently HKASF received the DVD of the 43rd NHK Japan Prize special. Although we just got into last ten in the final, the DVD still contained an excerpt that we participated in the repertoire "angel poem" and the interview. It is out of our surprise and we are happy about it.
Caption at 10"28 - 13"20
NHK | 26-11-2016
The topic "Hong Kong People" on A13 of Ta Kung Pao reported an interview about the Angelman Syndrome. This report hoped to let more people know more about the Angelman Syndrome. Other than this, it tried to let people feel the initial loss and dilemma of angel families to final acceptance and positive confront. All these come from the "love" that were given by people around the angel families. Today we can get out of the woods. By sharing with people, it is hoped that love can influence all Hongkongers and it is the real "Hong Kong spirit". "
Tai Kung Post |13-11-2016
Small angels are born with a sense of insecurity, and their homes are often the most comfortable places for them. In order to cater the needs of the little angels, we go everything one more step than others by spending a little more thought. Everything starts from living to create a comfort zone for them. There is no need to be fancy, it is the attitude to living and happy homes are….just that simple!
Viu TV | 29-09-2016
One of HKASF's purpose to establish is to make the community be aware of, care about and support Angelman Syndrome through various channels.
Lofty high rises from the ground. We work from the basics, starting from education, hoping to let the new generation have a chance to understand and come in contact what the rare diseases when they are still young. Through different activities or workshops, it will cultivate their awareness to care for the disabled.
Hong Kong Polytechic University | 19-08-2016
HKASF has been actively promoting the public to understand more about the Angelman Syndrome. Regardless whether it is the newspaper reports, interviews of weekly magazines, seminar speeches, radio interviews or even the special report in television coverage, we treasure all opportunities and try our best to make the best out of every coverage. But more important to it, we get angel families coming out together to support. To get the public recognition and communion, we know that it ought to start from the angel families!
Cable TV | 07-08-2016
The charity sale of HKASF x May's Cookies will continue, so that kind hearts connect together. We will go out to promote, letting more people understand the Angelman Syndrome. Other than that, we would also like to see by using the "Angel Cookie gift box" we can spread the happiness, kind and loving hearts to every corners in the community.
We are grateful to the support of those electronic media and bloggers for writing scripts for us. The recognition by them is the greatest driving force for us. Continue to care about the rare diseases and support social communion!
RTHK2 | 03-08-2016
In June, HKASF was invited to attend "Special Love" Children's Healthy Growth Symposium organized by RTHK Radio 1. Doctors of different areas and psychologists from all walks of life provided professional talks. There are guests to share some ideas of taking care of children that have special needs.
In July, parents of angels and cabinet of HKASF will have a chat in the studio with two hosts, Akina Fong and Sham ta-yuen. We hope that through the atmospheric radio waves, the public will be more aware of Angelman Syndrome, a rare disease.
RTHK Radio 1 | 26-07-2016
We have the honor to be invited together with MAY Chan to Commercial Radio Hong Kong to have an interview in the program "When I Was Young I Listen To the Radio" . Through the atmospheric radio waves more people knew about the Angelman Syndrome. It was also a good opportunity for us to promote "Angel Cookies Gift Box" which was a charity project cooperated with MAY's COOKIES.
「HKASF x MAY'S COOKIES - Cookies Charity Bazaar」
Program review
It is our privilege to be the guest with Ms. May at the Commercial Radio 2 for promoting the 「HKASF x MAY'S COOKIES - Cookies Charity Bazaar」.
CR2 | 01-07-2016
An article in <百感集> of sundayKiss Magazine, Families with Children Suffering from Angelman Syndrome Break Through Difficulties With Laughs
Through a topic report of angel families in <百感集> of sundayKiss magazine, distributed with the Oriental Sunday in June 30, 2016, we hope that it might help more people to have a deeper understanding of Angelman Syndrome.
Full Message
Sunday Kiss | 30-06-2016
The first promotion short film of Angelman Syndrome was finally finished shooting. Very grateful to a group of first-year students of "Hong Kong Design Institute ". They just produced a succinct but meticulous work with their love.
* Special thanks to our HKASF consultants, Dr. Brian CHUNG, Council Member of The Hong Kong Society of Medical Genetics, provided professional comments for the film.
Hong Kong Design Institute | 29-06-2016
This is an amazing testimony conducted by Creation TV. We do hope our faith and love in action can be the encouragement and bring hope in Chinese society over the world. With our life testimony to touch others life.
TV Programme by Creation TV | 18-06-2016
Kenneth Law, one of the angel father with his son were invited to participate in Father’s Day Celebration activity in aPM, shopping mall in Kwun Tong this year. The super father held a good sharing session with others.
Press Interviews | 18-06-2016
The sole purpose of all interviews by the local major media, angel families coming forward one by one in participating and sharing, together with the professional comments from authoritative doctors, is just to let the community understand, accept and be tolerant to the genetic disease Angelman Syndrome, the rare disease that has once been misunderstood.
Ming Pao - Report on the Angelman Syndrome, so rare disease no longer strange, no longer terrible
The whole story: Children love laughing like hitting; Angelman Syndrome often being late diagnosed
Ming Pao | 29-05-2016
The first exhibition of Angelman Syndrome in Hong Kong did not come out easy. The credit ought to be sent to the angel families. They worked together and demonstrated lots of courage to share and promote Angelman Syndrome to the community without fear. Their hard work aimed to the future of the angels, hoping to get the recognition, attention and tolerance from the community. When more people understand the needs of angels, they will support HKASF.
The Standard posted on May 9 2016
http://www.thestandard.com.hk/section-news.php?id=169070
'Angel' parents seek tolerance, not abuse
Press Interview | 09-05-2016
We are most happy to have an Interview by Angel's Heart Magazine.
Full messgage is available NOW. Go Read More!
Angel's Heart | 01-04-2016
Thanks for the invitation from Saddleback Church Hong Kong. A spiritual testimony for me, our family and also HKASF.
Saddleback Church HK | 27-03-2016 |
29th February - World Rare Disease Day (WRDD)
Angelman Syndrome is also classify as rare disease, we are most happy to have a news report by Sing Tao Daily for arousing the public awareness to Angelman Syndrome and also the rare disease.
Sing Tao Daily | 29-02-2016
We are honour to have a sharing on Seasonal Newsletter of SAHK No.11 Jan 2016
SAHK | 01-2016
Celebrates International Angelman Day and Spring Festival
Full Message :
Celebrates International Angelman Day and Spring Festival
Sunday Kiss | 15-02-2016
An interview for "Happy Puppet Syndrome" (now known as Angelman syndrome) in 1998.
A poioneer to draw the public awareness to AS.
East Week | 19-03-1998
An encouragement video for all the Angelman and families produced by The Foundation for Angelman Syndrome Therapeutics (FAST).
FAST | 18-12-2015
An article of Angelman Syndrome and HKASF was posted on "Sunday Kiss" on 12-11-2015.
Full Message
Sunday Kiss | 12-11-2015
Program: RTHK 926, Radio 1 <非常人物生活雜誌>
Presenter: Ms Sophia Yow & Mr LC Kwok
Programme reviewed
RTHK Radio 1 | 01-11-2015
Angel Chloe’s first TVB segment, “Friday Report”, on YouTube, it was broadcast live on Sep 25, 2015 at 1900-1930hrs, TVB Jade.
TVB Friday Report | 25-9-2015
An article of Angelman Syndrome and HKASF was posted on "TVB Weekly" no.952 on 21-09-2015.
TVB Weekly | 21-9-2015
More than 200,000 hits browse within two days. It was a great encouragement and support towards our efforts. We will keep going and searching the missing Angelman and families.
Apple Daily | 29-8-2015
Lorem ipsum dolor sit amet, in natum ullum accusata usu, an pro unum eruditi. Semper forensibus sit ex, dolorem adipisci quo id. Cum cu malorum persius expetendis. Cum malis scripserit an, qui rebum option in. Eos an dicat fastidii, qui ut insolens recteque. Sed et velit facilisi, in vel adversarium mediocritatem.Pri tantas vulputate ex. Incorrupte persequeris delicatissimi vis ut, partem latine pri eu, eum ex dolore oporteat mediocrem. Vis vidit animal ad, facer democritum cu has, libris delectus ei eum. Duo possim veritus te, mucius nominavi te eos. Nemore putant mentitum no vis, ex illud numquam complectitur pro.Feugiat facilisi ad ius, ei eam tollit reprimique, ius an bonorum democritum. Et pri atomorum disputationi. Affert utinam appareat ut nec. Dictas tincidunt adipiscing nec ad, oratio aliquam et eum.
An solum molestiae sea, vix an rebum labores oporteat. Nisl animal nam cu. Evertitur honestatis et mea, eos ut eruditi accusamus, iudico utamur corrumpit at eos. Illum dolor his ea. Aeque accusata honestatis ex cum, usu inani offendit posidonium ut, eos ea agam assum nostrud.Ei vim appareat vituperata, usu no tempor urbanitas tincidunt. Ne his nihil antiopam, est sint aperiri et. Vim elit equidem at, vel purto unum rebum ad, ceteros civibus neglegentur vis ut. Tota deserunt no sed, nec te iisque utroque. Nam malis deterruisset ut, tation persius disputando an sed, ea pro doctus adipisci. Euismod expetenda consulatu cu vix. Aliquam praesent consulatu mel id, mei cu omnis gloriatur.
An solum molestiae sea, vix an rebum labores oporteat. Nisl animal nam cu. Evertitur honestatis et mea, eos ut eruditi accusamus, iudico utamur corrumpit at eos. Illum dolor his ea. Aeque accusata honestatis ex cum, usu inani offendit posidonium ut, eos ea agam assum nostrud.Ei vim appareat vituperata, usu no tempor urbanitas tincidunt. Ne his nihil antiopam, est sint aperiri et. Vim elit equidem at, vel purto unum rebum ad, ceteros civibus neglegentur vis ut. Tota deserunt no sed, nec te iisque utroque. Nam malis deterruisset ut, tation persius disputando an sed, ea pro doctus adipisci. Euismod expetenda consulatu cu vix. Aliquam praesent consulatu mel id, mei cu omnis gloriatur.
An solum molestiae sea, vix an rebum labores oporteat. Nisl animal nam cu. Evertitur honestatis et mea, eos ut eruditi accusamus, iudico utamur corrumpit at eos. Illum dolor his ea. Aeque accusata honestatis ex cum, usu inani offendit posidonium ut, eos ea agam assum nostrud.Ei vim appareat vituperata, usu no tempor urbanitas tincidunt. Ne his nihil antiopam, est sint aperiri et. Vim elit equidem at, vel purto unum rebum ad, ceteros civibus neglegentur vis ut. Tota deserunt no sed, nec te iisque utroque. Nam malis deterruisset ut, tation persius disputando an sed, ea pro doctus adipisci. Euismod expetenda consulatu cu vix. Aliquam praesent consulatu mel id, mei cu omnis gloriatur.
An solum molestiae sea, vix an rebum labores oporteat. Nisl animal nam cu. Evertitur honestatis et mea, eos ut eruditi accusamus, iudico utamur corrumpit at eos. Illum dolor his ea. Aeque accusata honestatis ex cum, usu inani offendit posidonium ut, eos ea agam assum nostrud.Ei vim appareat vituperata, usu no tempor urbanitas tincidunt. Ne his nihil antiopam, est sint aperiri et. Vim elit equidem at, vel purto unum rebum ad, ceteros civibus neglegentur vis ut. Tota deserunt no sed, nec te iisque utroque. Nam malis deterruisset ut, tation persius disputando an sed, ea pro doctus adipisci. Euismod expetenda consulatu cu vix. Aliquam praesent consulatu mel id, mei cu omnis gloriatur.
