Team Butterfly
Encountering a newborn baby with skin that tears and blisters in your hands is obviously extremely scary. EB is so rare in HK, that the prevailing awareness of what it is and how to manage it is extremely low. We want to train a team of nurses and other care-givers in the best evidence-based guidelines tailored to HK.
- Starter packs
- Online tutorials
- Phone/ Whatsapp advice
- Hospital or Home visits
Butterfly Children
Epidermolysis bullosa
`Butterfly Children`
When the assembly of the skin is faulty due to a genetic defect such as in EB, the skin is as fragile as the wings of a butterfly. It can break down repeatedly with the most innocuous of injuries and patients have to endure a life of pain and suffering with chronic wounds and frequent infections. Long term complications include loss of function, malnutrition and skin cancer. Butterfly children die young. There is currently no cure for EB.
DEBRA HK
DEBRA was founded in the UK by Phyllis Hilton whose daughter Debra had EB. In 1963, when Debra was born, doctors knew next to nothing and Phyllis was told that nothing could be done and that she should take her baby home to die. She ignored this and found ways to treat her child's skin with cotton dressings.
15 years later, doctors directed the parents of another EB child to Phyllis for advice. Shocked by this continued lack of knowledge, together they formed the world's first EB patient support group that became DEBRA in 1978, the same year that Debra died. In the decades since, DEBRA has grown and has inspired the formation of over 50 national DEBRA groups that all come under the umbrella of DEBRA International. This organization is the biggest EB resource in the world. They have brought together International experts with extensive knowledge of EB both online and at educational meetings; they have published Treatment Guidelines that can be used free of charge.
The HKCSF would like to form DEBRA HK and learn from this extensive network of doctors, nurses and patients and their families. This is the most effective way to help EB children in Hong Kong. As part of this, we would:
- Establish `Team Butterfly`
- Distribute `EB starter packs` - EB children require special (and expensive) non-adhesive dressings, special feeding teats
- Translate DEBRA guidelines into Chinese.
- Offer counselling
- Advocate for EB patients and families
- Increase patient awareness.
- Establish an EB patient registry. We are seeing the tip of an iceberg; many need our help and do not know it.
- Fund gene sequencing
- Fund research, in Hong Kong or overseas.
Research Directions
- Gene therapy
- Recent developments in gene corrected skin replacements are very encouraging)
(https://www.nytimes.com/2017/11/08/health/gene-therapy-skin-graft.html) - Provide free gene sequencing. There are over 20 different mutations associated with EB alone; the specific mutation influences the clinical manifestation and the potential gene therapies.
- Recent developments in gene corrected skin replacements are very encouraging)
- Cell therapy
- Use of stem cells to promote regeneration and healing
- Wound therapy
- Tissue engineering, super-microsurgery and transplant techniques for complex skin and scar conditions.
- Advanced wound care strategies and techniques.
Fundraising
Wine Auction Charity Dinner, 23rd March 2018
Butterfly run (butterfly.run) fund raising 2 or 5 km run. This was held on the same day in three countries (Russia, Chile and Singapore) in 2017. We will take part in the global run in 2018.
The HKCSF Strategy
We will focus on two areas in themanagement of rare skin diseases in
children:
- Provide care and support to improve the quality of life for patients and families living with rare skin diseases.
- `Team Butterfly` will become our
model. - Fund pioneering research into effective treatments and ultimately, cures
International Collaboration
The Foundation will support local work eg Prince of Wales Hospital. The team will also take part in promising overseas research where local regulations allow. The Foundation may also fund promising research in overseas centres of excellence.
What We Do
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Children our Future
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