Use of Donations

Our donations are generally allocated across administration, treatment fund, public education, training, networking events, and medical/learning equipment aid. Details can be found in our audit reports.

Administration

We are not affiliated with any institution and do not have our own premises. Our registered address and telephone support are provided by the Hong Kong Society for Rehabilitation Community Rehabilitation Network Jockey Club Wang Tau Hom Centre. This is mainly because we have no staff – daily operations are handled by parent volunteers. In recent years, we have received assistance from Bbluesky Company Limited, which handles all external promotion and secretarial work, allowing us to operate with minimal expenses.

Treatment Fund

In October 2007, with the assistance of Mr Fernando Cheung and the Civic Party, we organised a charity concert that raised HK$1,383,400. After deducting expenses of HK$228,330, the remaining HK$1,155,070 established our treatment fund. In 2009, our treatment fund committee approved support for two members’ medications. Unfortunately, one member passed away suddenly before starting treatment. Additionally, in February 2010, the government included medications for Mucopolysaccharidosis types 1, 2, and 6 in the drug formulary, eliminating medication costs for members. The remaining HK$540,000 is reserved for future member medication needs.

Public Education

As patients and families affected by rare diseases, promoting public awareness and concern for rare diseases is our responsibility and mission. Through school sharing sessions, book publications, and annual events on Rare Disease Day (28 or 29 February), International Pompe Day (15 April), and International MPS Day (15 May), we organise various activities to help people understand HKMPS while also serving as a platform for member recruitment.

Training

International conferences provide excellent training opportunities. By connecting with sister organisations and patients, doctors and experts from different regions, we broaden our perspectives, exchange organisational experiences, and promote awareness of rare diseases. We are therefore very willing to subsidise members’ participation in these conferences.

Networking Events

Our annual general meeting, autumn outing, and Christmas gathering are regular activities. Given frequent medical appointments and caregiving responsibilities, members and their families may lack motivation to organise activities themselves. Through our initiatives, they have opportunities to relax and enjoy a day out. We invite friends who have donated to us to these activities, both to express our gratitude and to help them better understand HKMPS, with the aim of building lasting friendships.

Medical/Learning Equipment Fund

While medication costs are now covered by government subsidies, members still need medical equipment assistance for healthy daily living. These include ventilators, suction machines, electric wheelchairs, hearing aids, glasses, air conditioning, and even home modification projects. Many of these items range from thousands to tens of thousands of dollars, with annual maintenance and accessory costs exceeding a thousand dollars. Additionally, to encourage studying members, we support their practical needs by helping them acquire learning equipment such as computers, projectors, and computer magnification software (as the disease affects their vision, requiring software magnification to read text on computer screens). We have established this special fund to subsidise their equipment purchases.

All these initiatives rely on the support of friends who care about us. We pledge to carefully use every donation. Thank you all.