Event Detail

In 2014, because of the "ice bucket challenge", Hong Kong people have more knowledge and attention about patients with muscular dystrophy. What is their situation today after three years?

Muscular atrophy Patient

There are no official statistics in Hong Kong at present, indicating the number of patients with muscular dystrophy. However, according to the estimates of brain physicians, there are currently more than 10,000 patients with muscular dystrophies in Hong Kong. They account for 0.14% of Hong Kong's population, and they are not able to speak for themselves and tell their needs. They are more likely to be ignored by the community.

For people with muscular dystrophy, their muscle function will disappear, gradually showing muscle weakness, convulsions, tremors, degeneration and atrophy. In severe cases, dysphagia, cough and respiratory function decline, directly threatening life of patients. Their physical fitness is gradually degraded, losing their ability to move and self-care, and their chances of complete recovery after illness are extremely low. Although their muscles of the whole body are weak and they cannot speak, they are fully aware of their condition and the function of their muscles. They lack the ability to move and are not able to participate in different activities as normal people in life. The scope of activities is limited and there are not many opportunities for them to participate in the community.

In particular, there is currently no relevant nursing home care service in Hong Kong. Patients are usually only allowed to stay at home, taken care of by their families, and their families face enormous pressures of care at the same time. Apart from the pressure of taking care of the patients, patients and their families are also faced with expensive drugs and expensive medical equipment. Most of the furniture and equipment used are specially made. The Government's current supporting thresholds are also high, especially for the group in the middle. The patient did not receive appropriate support.

The 2014 Ice Bucket Challenge fundraising event raised 30 million donations for the Hong Kong Neuro-Muscular Disease Association to subsidize different aspects of rehabilitation expenses for patients, including the purchase of rehabilitation equipment and medical supplies, as well as daily transportation fee for using Rebus. The Hong Kong Neuro-Muscular Disease Association has also established rehabilitation subsidy systems for patients to purchase rehabilitation equipment, medical consumables and physical therapy for patients in need. Due to the high expenditure on medical expenses and activities of patients with muscular dystrophy, the donations raised by the Hong Kong Neuro-Muscular Disease Association will be exhausted in three to five years.

IN123 Large-scale community service "Myogenic Everywhere, Love Everywhere"

IN123 chooses to serve children and adolescents with atrophy in order to create an ongoing caring community. We want to attract more people in the community to continue to pay attention to "muscle atrophy patients". Through the greater resounding and concern of the community, the Government and the Social Welfare Organization can also provide more resources to support patients in need and let the patients with rare diseases can also enjoy a colorful life.

Through this activity, we will create a different day for a group of people with muscular dystrophy and their families to create a joyful, confident and inclusive weekend for them to exert their most beautiful, confident and cute side. At the same time, creating a warm, joyful and meaningful experience for them and their families. Through this large-scale service, we create an opportunity to exploit the talents of people with intellectual disabilities and volunteers to create an inclusive and equal development activity through performances, games, etc., connecting different groups of disadvantaged groups.

More importantly, we also want to attract the concern of people from different walks of life and the outside world through the activities to let the healthy people know how to cherish each and every life around them, learn from each other and love each other.

IN123 will record the whole preparation process and the situation of the event day make into a micro-movie for social media distribution and publicity, to influence more people in the society to pay attention to muscular atrophy, and then continue to strive for long-term support for the Foundation and attract them to become a long-term sponsor.

Date: 16 September 2017 (Saturday)
Activity time: 2:00-5:00 pm
Venue: Heung To Secondary School (Tseung Kwan O)
Service target: 30 families
Estimated number of volunteers: 80-100 volunteers
Contact: Jill 94518441 / Sophie 92091889 / Stephenie 91886577