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Promotes "Angelman Syndrome" in "International Angelman Syndrome Day"
Recently, I was fortunate to be invited to a speech therapy center to give a presentation on the characteristics of patient with Angelman syndrome.
As we all know, Angelman have no language ability due to lack of brain development. speech therapy is a high-expense and low-return training for Angelman, but as long as you keep learning and trying with a humble heart... I believe... We will definitely reach a new milestone in the coming future!
Date : 20-02-2024
Time : 1400hrs - 1600hrs
Thanks Pedorthic Technology Ltd for holding a workshop for us every 6 months. Due to the development of brain and ability of balance, the patients are suffering scoliosis and instability of walking. With the caring and support by the therapist of Pedorthic Technology Ltd, the problems has been improved.
Date : 8-11-2019
Time : 1400hrs - 1700hrs
Thanks for Pedorthic Technology Ltd showing us what is the spirit of caring and love for the society, what is "unconditional" Love.
With the growth of our children, parents must pay attention on the physical change. Thanks Spine Technology provide a medical check for foot and chiropractic every year. This time, there are 9 families and 27 participants attended the workshop. The workshop always become a party and makes parents and our children happy.
Furthermore, HKASF welcome 2 new families to become our new friends and this workshop is also our first meet. In the future, we will support each other and walk together.
Special thanks to :
http://www.ezped.com
Date : 28-5-2019
Time : 1400hrs - 1700hrs
HKASF will continue to collect services and products which is suitable for AS families in order to improve the lifestyle and growth of Children. We wish you keep supporting us.
"Caring Ticket" has been one week since the campaign launched. In the past 2 weeks, we distributed over 5000 tickets via One Click Care platform.
Date : 6-3-2019
Time :
SAHK is the leader of Disability service provider and also the long term partner of One Click Care. Also, SAHK give us
HKASF has responsibility to promote rare disease and we always support the symposium held by HK Alliance for Rare Diseases.
Topic of 2019 is Technologies and Life, both medical experts and our friends shared their works on research and promotion. Their sharing are very encouraging and inspiring and makes us feel warm.
Date : 2-3-2019
Time : 10:00-15:30
Besides, we thank HK Alliance for Rare Diseases for letting us to promote "Caring Ticket" during the lunch time. The Campaign received many support and recognition. For more detail, please click the below website.
https://www.facebook.com/164222883909256/posts/855123244819213/
HKASF will keep going with our belief to help every patients with rare disease improving their quality of life. We are welcomed to have suggestions from everyone.
"Caring Ticket" Campaign co-hosted by Hong Kong Theatres Association Ltd and Hong Kong Angelman Syndrome Foundation and will be launched at 1st March.
Date : 27-2-2019
Time :
HKASF held a roadshow and introduction section in Direction Association for the Handicapped. We thank to 4limb for supporting "Caring Ticket". Ms Ho and Ka Ming will distribute the Caring Ticket voucher to all 4limb member who are interested in it. From 1st March to 31st May, the Voucher holder can enjoy the "Student discount" (elderly discount in Golden Harvest) when you go to cinema.
If your Patients' Group and NGO are also interested in "Caring Ticket". please feel free to contact HKASF.
The first Rare Disease in Hong Kong "121 Expo" will be held on 1st December.
Recently, HKASF held a briefing section for all patients' groups that involve into the Expo. During the Berifing Section, HKASF introduced the mission and vision "One Click Care" to our friends.
Date : 18-10-2018
Time : 1930-2200
We are so glad to receive support from 18 patients' groups and let us understand the importance of support and encouragement.
Thanks everyone who contribute to the 121 Expo. Let's walk together.
Recently, HKASF held its first exchange workshop with the Hong Kong Alliance for Rare Diseases (HKARD) at Small Angel Resource Center. We invited colleagues from HKARD to conduct a targeted research survey on angels and their caretakers. The purpose is to gain insights into the family needs of rare patients, collect substantive data to conduct policy studies, and reflect them to relevant authorities, suggesting improvements in related policies or measures.
Through this study, HKARD and HKASF expect to gather more truthful evidence, condense greater voices and strengths, thus enable more people to pay more attention on rare diseases, convey opinions and appeals to the relevant units, and strengthen support for rare diseases.
For the purpose of this interview survey, we specifically divided the center into multiple independent zones to allow respondents to express their opinions freely with full privacy and space. For parents having finished their interviews, they can take care of the little angels with food and music.
Our multi-purpose "Little Angel Resource Center" do makes us feel like home, surely a comfortable and enjoyable place.
Date : 28-4-2018
Time :
In order to promote the public awareness and love of Rare Disease, since 2008 EURORDIS established a International Rare Disease Day at every last day of February.
Hong Kong Alliance of Rare Disease organize a seminar to share the experience of research.
Date : 25-2-2018
Time : 9pm - 5pm
Resource Sharing Platform of One Click Care aims to fulfil the needs and the improve the quality of life of Disabilities and SEN families.
Dental health is one of the big problem of disabled-families. So, we seek the opportunities to work with private and public sector in Dental service.
Date : 11-2-2018
Time : 1:30pm - 4:00pm
on 11 February, under the monitor of Faculty of Dentistry, The University of Hong Kong and and Professor Yiu, Cynthia Kar Yung (HKASF Advisor), almost 20 volunteers sincerely served 10 families and.
Also, through the talk, we gain more knowledge of caring the teeth including cleaning and handling tooth decay. Although the dental check scared our angel, it was so easy and made us smile. Then, the volunteer taught us how to correctly brush the teeth and gave us souvenir and leaflet.
Last but not least, the Faculty is planning to organize more workshop to help more disabled and SEN families. Please take a look at this.
HKASF is so glad to see we will have a lovely dentist like them!
HKASF would like to thank the invitation from Prof. Brian Chung, Associate Professor of Clinical Medicine for the Department of Paediatrics and Adolescent Medicine of The University of Hong Kong. Joson and Andy, as patient’s parents, thus have the chance to share and chat with a group of medical students of The Division of Medical Ethics and Humanities.
During the class, Professor Chung specially selected a RTHK program "A wall-less World V" – poem of angels” filmed in 2015 with angel families participated in the acting. Watching the program together with the students brought out the message that rare diseases, though rare, should not be ignored, but indeed worth all the attention.
It was quite a great experience to share "angel poem" story with more than a hundred Hong Kong top notch students. The scenes in the program reproduced in front of us again and we felt a lot. After all ... two years have passed, have the wall been removed yet?
Although government policies have not yet been perfect to take everything into account and there are still many shortcomings in the health care system, we still have many doctors, professors, social workers, patient organizations, social welfare organizations and even patient families that continue to strive hard for their “mission” in the health care sector .
For over forty years I have achieved little, but indeed God has given me a small angel boonboon with Angelman Syndrome that has a serious mental retardation. And because of her, the “mission” has been planted for the whole family to influence others from another point of view, using life to move life.
We do hope that these class students, as the future of the community pillars, cherish the talents given by God and continue to shoulder their own "mission" to benefit the community!
Thanks again to the invitation of Dr. Chung. It is him that leads the growth of HKASF. Also thanks to Andy and the HKASF team. It has been a great honour to work with them to serve the community.
Time flies, two years have passed….
"A wall-less World V" – poem of angels”
http://www.hkasf.org/tc/media_detail.php?id=25
Date : 21-09-2017
Time : 10 : 00 - 12 : 00
Since the establishment of HKASF, we adhere strongly to our belief and often go out to share our stories through different channels. Besides promoting the Angelman Syndrome, we like to make the public learn, accept and care for patients with rare diseases as well.
To count, we have engaged in college lectures, secondary school activities, company roadshows, and even present ourselves in wedding banquets as guests. This time we have great honor to accept the invitation from Christian Canaan Church to share in different parishes.
So it is a great pleasure for Joe and Joson, as the founders of the Hong Kong Angelman Syndrome Foundation (HKASF), shared the bits of how to take care of their elder daughter with rare disease and how the Foundation is established.
Welcome to visit the sharing sessions:
Session 1: 3/6/2017 Christian Canaan Fanling Hall (Cheung Wah Estate) https://youtu.be/jN0Ks4zN03A
Session 2: 10/6/2017 Christian Canaan Church - Tai Wo (Norwegian International School) https://youtu.be/FBYd3RqTjZw
Session 3: 11/6/2017 Christian Canaan Shatin Hall (Holford Garden) https://youtu.be/4Oois4ln1aE
Date : 3, 10 & 11-06-2017
Time : am & pm
HKASF little angel summer swimming training class starts again!
As little angels have brain retardation and loss, control of the general large muscles and small muscles is relatively weak and the body balance is poor. These lead to the left and right swings and crooks during walking. The alias "happy puppet" is hence thus named. With the advance in medical and treatment methods in recent years, the walk in younger generation of small angels has been significantly improved.
One of the most effective training is swimming which not only improves physical fitness, but also strengthens the balance and the ability of muscles of small angels. Swimming can have great help in easing the brain cramps and the release of brain currents.
From June onwards, we will team up every week to swim. All angel families are welcome and let us all make effort!
Date : 01-06-2017 - 30-09-2017
Time : 下午/ afternoon
Time: afternoon
HKASF in 2017 sets up a long-term objective and is determined to take a step further to put more care to the community. With the firm determination and perseverance, in the spirit that helping others, we are planning to launch “One Click Care” program.
Nevertheless, the enthusiasm of the service and support of the angel families has never been put aside. We continue to look out for any means that can improve living and learning ability of the small angels.
As little angels are born to be active but lack of security, a lot of things looks ordinary to others seem difficult for angel families, for example, hair cut.
Date : 30-05-2017
Time : 13 : 30 - 16 : 30
Recently, we have arranged a haircut class for a group of angel families. It provides a free teaching lesson for the angels’ parents and hope that they may use the skills on the angels.
Special thanks to Uncle Ben's for the tutor lesson and for all the pruning tools to the angel families. Any HKASF achievement depends on all the support of friends who sometimes are teachers as well. Thanks to you!
The third Medical & Assessment @ Foot care and Chiropractic workshop, organized by HKASF, was successfully finished yesterday.
We are grateful to the Company for providing the continuing professional examination and advice to the angels whose conditions have shown improvement. Their concerns to the growth of angels are greatly appreciated.
Date : 09-04-2017
Time : 14 : 30 - 17 : 00
It is worth mentioning that there is a small angel being just diagnosed attended the workshop for the first time. We are grateful to the trust, persistence and recognition from the angel families. HKASF will continue to work hard, aiming to assist/improve the ability and life quality of small angels. We believe that we will have a better tomorrow and we need to make an all-out effort!
Special thanks to Pedorthic Technology Limited.
www.ezped.com
www.spine-tech.com
Besides having an enthusiastic cabinet team which works hard for small angels and families, HKASF also possesses a strong team of advisers, putting their great efforts in promoting Angelman Syndrome.
Date : 01-03-2017
Time : 15 :30 - 17 : 00
Two HKASF medical genetics advisors, Dr. H.M. LUK and Dr. Brian CHUNG arranged for us to take a visit to HKU School of Professional and Continuing Education and provided us a chance to give a talk to a group of senior medical staff.
Besides introducing Angelman Syndrome and HKASF to the audience, as angels’ parents we also shared the mental course of taking care of little angels, and our expectations to health care workers. As Mr. Chung said, sharing and exchanging are always the best way to learn.
HKASF will continue to work hard and spread seeds with humble hearts!
In order to promote public awareness and care for rare diseases, the European Rare Diseases Organization (EURORDIS) set the last day of February as the "World Rare Disease Day" since 2008.
The Hong Kong Alliance for Rare Diseases (HKARD) also takes this opportunity to hold a seminar every year to invite organizations and families of rare diseases in Hong Kong to exchange, discuss and advocate policies. This year, the Hong Kong Angelman Syndrome Foundation (HKASF) was honored to be one of the supporting institutions of HKARD 2017 World Rare Disease Day Symposium held at The
City University of Hong Kong.
Date : 25-02-2017
Time : 14 : 00 - 17 : 30
The purpose of the Symposium was to raise awareness and concern on rare diseases in Hong Kong for the ultimate purpose to improve the community support of rare diseases management both in aspects of resources and policy development. Besides the representatives of the rare disease associations, there were patients, family members, doctors, scholars, government officials, representatives of Hospital Authority, representatives of the pharmaceutical research industry that sat in the Symposium. The wonderful and enlightening speech were beneficial to all. HKASF showed its support by collaborating in one of the workshops - the sharing of patient organization.
After the Symposium, we got the promise from HKARD to support the preparation work of the Global AS Registry project which, as the major key job of HKASF this year, we hope to have it implemented as soon as possible. HKASF is the sole accredited institution in the Chinese community to collect AS data. Building this data helps further medical research on this disease.
After the introduction of the theory and historical background in the last session, we have gained a lot of understanding of aromatherapy. During this session we learnt the effectiveness and techniques of aromatherapy, and received valuable and appropriate advice according to the needs for the small angels. The angel families benefited a lot.
Special thanks to Debby as the lecturer and Jayden act as the small model for the demonstration, letting the seminar to be carried out and finished smoothly.
Date : 26-11-2016
Time : 10 :00 - 12 : 30
DEBBY LAI
Ph.D., CIT Specialist, C.I. (Practice)
CIT - Clinical Information Technology Specialist
- Advanced Clinical Muscle Information Inspector
C.I. - CARE Instructor (CARE stands for The Center of Aromatherapy Research and Education)
HKASF has always been committed to promote Angelman Syndrome to the community. Recently we have a honor to be invited to The Open University of Hong Kong, sharing our belief and experience.
Facing a group of future health care talents, the two guest lecturers felt real shy and embarrassed. But it is our hope that this little sharing can let people understand more about the Angelman Syndrome, and provide more care and tolerance to the angels. We also wish that this sharing can encourage students to evoke more responsibility for the community service, and the Hong Kong spirit of love can be continued.
HKASF will work hard and continue to act to influence all the people around!
Date : 21-11-2016
Time : 0930 : 1045
YouTube Link : HKASF seminar @ HKOU
Many Angelman Syndrome patients like the tactile sensation and olfactory sensory experience, which help them to relax, cooperate and listen. In recent years, there is a rise of using essential oils for treatment. A lot of parents have the habit of using aromatherapy, and some parents believe that massage and aromatherapy can improve the motion and concentration of the angels.
So what is aromatherapy?
Aromatherapy refers to the selection of some essential constituents from some natural plants and used for treatment of human health as a whole. Essential oils can increase the body's immune capacity, prevent disease invasion, improve the physical health status, balance the psychological and emotional state, to restore the vitality of body and can be seen as a science of human health.
But the brand and technology in the market are so varied, no matter in the quality of the product or the style of the therapists or users can directly affect the effectiveness of aromatherapy. A little careless mistake can cause damage.
HKASF has always been the first to try. As long as it is helpful to the angels we are eager to listen and learn. Since aromatherapy is said to be effective for the little angels, how would we miss it? We hoped to search and arrange experts to hold lectures for us to provide professional and objective concept, so that small angel parents can know more for further study.
Date : 19-11-2016
Time : 10 :00 - 12 :00
Finally we got hold of the expert of the experts, known as the oil encyclopedia Debby to hold lectures.
Debby Lai Ph.D., CIT Specialist, C.I. (Practice)
CIT - Clinical Information Technology Specialist
- Advanced Clinical Muscle Information Inspector
C.I. - CARE Instructor (CARE stands for The Center of Aromatherapy Research and Education)
- American Aromatherapy Research Center recognized professional mentor
Through Debby professional explanation and guidance, we can be sure that the angel families would have a more in-depth understanding of aromatherapy. The ultimate goal for sure is to use aromatherapy as an alternative treatment to improve or reduce the sequelae brought by the disease.
We have received the sponsor from Pedorthic Technology Limited for regular checkup for our small free of charge. This is the third one already.
This time Dr. Lee ka-yu, a chiropractors, performed vertebral examination and assessment for small angels. Foot expert Daniel Pang took care of the foot and helped to select the appropriate insoles for us. We also have Wing Yan, from foot orthopedic division took care of the spine correction stent. Once again, thanks to Agnes and all the co-workers for the heartful arrangement and professional assessment. Although it has only been a few months, we have noticed the obvious improvement of the small angels.
For the sake of strengthening the care of spine, in addition to the examination, Miss Dark Yuen, a sports therapist, was invited to provide a lesson on sports therapy, teaching us simple health care actions and correct posture. It is glad to see that all the members of angel families are so devoted and so happy in learning.
By the way, a group of medical students from Hong Kong Open University showed up for volunteer visits. Care and love…. start by taking action .
Everything is beautiful, just because of you!
Date : 25-09-2016
Time : 14 : 00 - 17 : 00
After the summer vacation, we not only continue the non-stop promotion and introduction of Angelman Syndrome, but also continue to seek more cooperation opportunities for the future plans.
Recently, we have the honor to be invited to the Lions Club of Shatin for a roadshow promotion of HKASF. Lions Club is well known in Hong Kong and this time we have the privilege to meet the prestigious predecessors, all of them are enthusiastic in public welfare. To make a presentation before them seems a bit odd but thanks to Sophia, the President and a number of senior predecessors, they carefully listen to our needs and are more than willing to share with us their service community experience.
We strongly believe that under the guidance and advice of the predecessors a solid collaboration with Lions Club of Shatin will soon come out and we look forward to it.
Date : 06-09-2016
Time : 19 : 00 - 20 : 00
Date : 20-08-2016
Time : 10 : 00 - 12 : 30
"Angelman Syndrome" is classified as a rare genetic disease by medical profession, but in fact there is always a misunderstanding of this disease name.
Angelman Syndrome is derived from DNA gene mutation with 97% of the patients are not inherited by the maternal or paternal inheritance. But all DNA lesions will be classified as "genetic diseases", thus the chinese names are translated as " genetic diseases ".
HKASF actively works with medical teams and organizations in different sectors in organizing medical seminars to enable the community to recognize and pay attention on rare patients. Recently, together with Dr. Ko, a doctor in Obstetrics and Gynecology, we attended the seminar organized by Health Plus Magazine to provide prenatal talks for parents. Through increased awareness and understanding of the public, it is helpful in raising attention and the needs for those patients with rare diseases. Maybe one day when more resources can be sought we can say no to the diseases caused by mutation!
Date : 10-08-2016
Time : 19 : 30 - 21 : 00
HKASF co-organized a dental treatment workshop with The University of Hong Kong's Prince Philip Dental Hospital for young angels under 19 years of age.
This event will open new files for young angels and provide a platform for dental care for the angel families. The participants can arrange regular inspection and review if found the service appropriate.
Date : 28-07-2016
Time : 09 : 00 - 11 : 00am
We are most happy to be invited by Radio and Television Hong Kong (RTHK) to have a seminar on "Caring to Special Needs Children."
May our happiness, touching and infomation can be shared to all of you.
Date : 12-06-2016
Time : 14 : 30 - 16 :30
Please click the following link :
http://programme.rthk.hk/channel/radio/programme.php?name=radio1/healthpedia&d=2016-06-14&p=6794&e=&m=episode
Program review
Over 30 people form 10 AS families participated the workshop.
Date : 28-03-2016
Time : 15:00 - 18:00
This time, in addition to foot care, but also extended to the spine checked. Generous group of professional therapists, each carefully recorded for the inspection and assessment of little angels, it was not easy to have medical check-up for our angels, with great difficulty to adapt the environment and treatment. However, by our mutual care and cooperation of each AS families, we got a happy successful completion of the whole process, it was a very valuable experience generous.
Special thanks to Agnes Leung, led the entire program and workshops. Hope to have more opportunities to learn from you, be generous in your professional supervision, advice and guidance, I believe little angels generous foot and spine problems will certainly be greatly improved!
On behalf of AS families, HKASF would like to show our sincere thanks to Pedorthic Technology Limited. Your generous love to the healthy growth of the achievements of our angels.
Pedorthic Technology Limited
www.ezped.com
www.spine-tech.com
Most of our Angels were suffering flatfoot foot crooked, affecting the spine, resulting in scoliosis....
HKASF kept to discuss the various foot care and chiropractic for assistant. Grateful for the generous support of Podiatric Orthopedic Co., happy to provide one-stop service for our Angelman including lectures, one-on-one professional evaluation, after the comprehensive test, provided appropriate recommendations and exercises with them, hoping to help the healthy growth of the angels!
A group of Angelman families have visited Podiatric Orthopedic Clinic in Wan Chai, provided initial assessment, a practical workshops and full of joy generous thus successfully concluded.
Date : 06-02-2016
Time : 16:00-18:00
After the workshop, Pedorthic Technology had committed to provide a free follow-up for all the Angelman. And it will provide generous development and the most appropriate corrective or therapeutic by monitoring of the entire record of the little Angelman during the whole growing stage.
Pedorthic Technology Limited
www.ezped.com
www.spine-tech.com
Date : 13-11-2015
Time : 08:45 -17:45
School of Visit: The Mental Health Association of Hong Kong - Cornwall School, Haven of Hope Sunnyside School, Caritas Lok Kan School
Although most of the Angelman were classified as severe disabilities and destined to special schools, we are also generally as ordinary parents, panic in choosing the best for our angel! In order to have parents to be able to understand thoroughly the special schools, HKASF held a visit Day to three of the Severe Special School in Hong Kong on Nov13, 2015. In fact, with limited resources, Hong Kong is still no shortage of educators determined, different schools have their own characteristics. After the tiredness visit, the rainy dark-sky does not spoil parents’ enjoyment!
By: Students from The Hong Kong Polytechnic University – Human Occupations
We were being invited by the Yr-2 students from The Hong Kong Polytechnic University – Human Occupations, for a project of “Play Performance of a Child with Special Needs”; this project aims to investigate the play pattern of children with Angelman Syndrome, to analyze their play performance and to evaluate how Angelman syndrome would hinder the performance. Recommendations are also made based on the difficulties discovered.
Date : 21-10-2015
Time : 13:00-15:00
Our first workshop with students at School of Design, The Polytechnic University for promoting AS & HKASF was performed on 04-09-2015. Special thanks to Angel Fan has given an impressive speech of special need child to the students. More programs and cooperation with Ploy U will be launched in the coming months.
Date : 04-09-2015
Time : 14:30-17:30
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