"EB is the worst condition that most people have not heard about."
I am the Community Fundraiser for DEBRA.
I can deliver a DEBRA presentation to you in the Berkshire area or arrange one for you anywhere else in the UK.
I am a Community fundraiser for the charity DEBRA.
We support those with Epidermolysis Bullosa, or EB. It is a painful genetic skin blistering condition, which can often be fatal, and for which there is no cure. The skin does not have the glue to stick to the body. No skin? No barrier. No comfort. No hugs.
DEBRA provide a quality of life by offering enhanced nursing service, specialist care and support to people and families affected by EB.
Funds are vital for research to find a cure to eradicate this devastating condition forever. We provide real hope for the future by funding pioneering research. One day we hope to find the cure and eradicate EB forever.
You can help make a difference. Introduce me to your company, organisation or club to do a presentation about DEBRA and EB.
“True charity is the desire to be useful to others without thought of recompense”
Janine Lewis, Community Fundraiser for DEBRA
We support those with Epidermolysis Bullosa, or EB. It is a painful genetic skin blistering condition, which can often be fatal, and for which there is no cure. The skin does not have the glue to stick to the body. No skin? No barrier. No comfort. No hugs.
DEBRA provide a quality of life by offering enhanced nursing service, specialist care and support to people and families affected by EB.
Funds are vital for research to find a cure to eradicate this devastating condition forever. We provide real hope for the future by funding pioneering research. One day we hope to find the cure and eradicate EB forever.
You can help make a difference. Introduce me to your company, organisation or club to do a presentation about DEBRA and EB.
“True charity is the desire to be useful to others without thought of recompense”
Janine Lewis, Community Fundraiser for DEBRA
About DEBRA
Maisy has EB
DEBRA is the national charity that supports individuals and families affected by Epidermolysis Bullosa (EB) – a genetic condition which causes the skin to blister and shear at the slightest friction, or even spontaneously.
DEBRA focuses its work in three areas:
We interconnect each of these areas to ensure a holistic approach to our care, from birth, for as long as it is needed.
Without your support people with EB would not benefit from these services.
Maisy (photo,right) has EB. She has gentle hugs from Mum before her overnight bandages are carefully soaked away. Then her day time banadages are applied. Bandages protect her skin and prevents infection to her open wounds and blisters.
About EB
The condition was brought to public attention in the UK through the Channel 4 documentary The Boy Whose Skin Fell Off, chronicling the life and death of Jonny Kennedy, an English man with EB.
"Butterfly Children" is a term often used to describe younger patients because the skin is said to be as fragile as a butterfly’s wings. Hence the charity emblems with Butterflies.
Living with EB is a painful and disabling way of life. Read the real life stories of how families and patients cope. The pictures and stories are very moving, and makes you realise how lucky we are.
DEBRA focuses its work in three areas:
- We fund pioneering research to find effective treatments and, ultimately, a cure for EB.
- We provide an enhanced specialist EB Nursing Service, in partnership with the NHS, to
- deliver optimal healthcare to children and adults living with EB.
- We provide social care support to help people live with dignity. This is a service parents
- and people with EB can call on, to reach out for advice, advocacy in the face of red tape,
- and emergency grants. We provide access to specially adapted holiday homes and
- opportunities for social interaction.
We interconnect each of these areas to ensure a holistic approach to our care, from birth, for as long as it is needed.
Without your support people with EB would not benefit from these services.
Maisy (photo,right) has EB. She has gentle hugs from Mum before her overnight bandages are carefully soaked away. Then her day time banadages are applied. Bandages protect her skin and prevents infection to her open wounds and blisters.
About EB
- EB is a currently incurable genetic skin condition.
- There are three main types of EB: Simplex, Dystrophic and Junctional. In its most severe forms, EB is fatal in infancy and can cause aggressive skin cancer in young adults. Even in its least severe forms it can still cause lifelong disability and pain.
- EB causes a breakdown in the natural proteins that hold the skin and internal membranes, causing blistering and sores at the slightest touch – or even spontaneously.
- Skin blisters have to be lanced and dressed every day – a painful procedure, taking up to 3 hours.
- Excessive blistering creates scar tissue which can cause toes and fingers to fuse together.
- Scar tissue can also cause the oesophagus to narrow, making eating difficult.
- People with EB are often fighting infection, both internally and externally.
- One in 227 of us carry the recessive EB gene.
- There are at least 5,000 people living with EB in the UK and about 500,000 worldwide.
- This means that one in 17,000 births are affected by EB.
The condition was brought to public attention in the UK through the Channel 4 documentary The Boy Whose Skin Fell Off, chronicling the life and death of Jonny Kennedy, an English man with EB.
"Butterfly Children" is a term often used to describe younger patients because the skin is said to be as fragile as a butterfly’s wings. Hence the charity emblems with Butterflies.
Living with EB is a painful and disabling way of life. Read the real life stories of how families and patients cope. The pictures and stories are very moving, and makes you realise how lucky we are.
What your donation could provide
Your donation will ensure that adults and children in the UK who are living with the blistering
genetic skin condition Epidermolysis Bullosa (EB) receive the best possible specialist care
and support, and we can continue our work to develop new treatments and ultimately, a
cure.
£6 buys a special toothbrush which is soft yet effective and makes a real
difference to very delicate gums.
£15 buys a Special Needs feeder system. Babies with severe forms of EB have very sore blistered mouths and are unable to feed using a regular teat. This feeder system has a long teat to protect the underneath of the nose from rubbing on the bottle collar and a unique valve to allow a good delivery of milk from a weak suck.
£25 could pay for one hour of research to bring us closer to finding an effective treatment for EB.
£30 pays for a child to have a special day-out with EB Care Teams and other EB children.
£50 could fund an additional home visit by the EB team. Providing care at home is critical for those who find it difficult, or impossible, to travel.
£100 could pay for an essential baby changing unit to make life easier for parents as they frequently need to change nappies and dressings of a baby with EB.
£300 means a family could enjoy a week’s holiday together in one of DEBRA’s specially adapted holiday homes. Travelling can be very difficult for people with EB, but DEBRA’s three holiday homes are specially designed and equipped for people with EB. It could be the family’s first holiday for years and provides a well deserved break for all the family.
£500 could pay for a home air conditioning unit – essential apparatus to keep the skin cool.
£1,000 could help fund the welfare needs of a child with EB – providing a range of equipment such as special bed linen, food blenders, adapted buggies and much more.
£5,000 will provide essential specialist EB equipment, which is not easily available, including feeders, mattresses and bedding for newborn babies with EB.
£6,000 to evaluate potential new research projects at an international level.
£7,000 would maintain one of our mobile homes for a year – giving a great many children with EB and their families a much needed holiday break.
£7,500 would sponsor 20 adults with EB for a weekend away.
£8,000 would ensure our printed resources for parents, carers, patients and medical professionals are always up to date and show best practice.
£10,000 could provide a local child with specialist nursing for a whole year.
£10,000 provides the DEBRA Annual Members Day and Conference, bringing healthcare professionals and people with EB together to share information and collaborate on best practice.
£10,000 to further development of understanding as to what more we will need to do to move research findings from the laboratory to patient clinical trials.
£12,500 would fund essential health and welfare information, and regular updates to people living and working with EB.
£25,000 will allow DEBRA to provide Support Grants, directly to families in most need.
£50,000 to ensure our research programme is managed and monitored effectively.
£55,000 would fund a full time nurse caring for hundreds of EB patients and training carers and other healthcare professionals.
£55,000 funds a DEBRA Research Associate.
£100,000 would fund our Social Care Service for one year
Why not run, jump, walk, knit, drink tea...for DEBRA?
The list for fundraising is not exhaustive as you will see from these DEBRA pages.
I am quite passionate about wanting to make a difference. It's not just a job, it's also in my nature as you will see from my Rambling Blogs and fundraising events that I have done for a variety of charities. I now have this unique opportunity to actively spend my working week to indulge in my compassionate desire to help others. It is not just empathy and sympathy that have tugged at my heart strings to want to be able to raise awareness of this skin condition, to raise funds for the support and research. When you can see the difference your donations make you will understand what inspires and motivates me to be a part of DEBRA and champion their research, work and organisation. A few pounds could buy mittens to stop a baby scratching and blistering themselves to the bone. £150 could send a family to a specially adapted holiday home for a much needed break. Your donation brings relief, much needed support and also closer to the research goals to find a cure. This leaflet demonstrates further how DEBRA help.
2013 will see me continue with challenges and fundraising specifically for DEBRA but with a special twist. Why not join me?
Do have a look at the other DEBRA events and enter. It's not all about running, golf, walking or cycling. You can be as inventive and imaginative in your ideas as you dare. From a simple coffee morning to Pamper evening or host a products evening through to a 24 hour endurance event.
If you have some spare time why not also consider being a volunteer for DEBRA, at an event, shop of one of the offices. Why not set up a fundraising group? Whatever you can do, you will have fun and know you are making a world of difference.
Don't forget to let DEBRA know what you are doing so we can update the newsletter, Facebook and Twitter!
There are a number of DEBRA Charity Shops too. They are always looking for good quality items to sell. They are on Facebook and Twitter!
With thanks to the website and publications of www.debra.org.uk for key information and references
I am quite passionate about wanting to make a difference. It's not just a job, it's also in my nature as you will see from my Rambling Blogs and fundraising events that I have done for a variety of charities. I now have this unique opportunity to actively spend my working week to indulge in my compassionate desire to help others. It is not just empathy and sympathy that have tugged at my heart strings to want to be able to raise awareness of this skin condition, to raise funds for the support and research. When you can see the difference your donations make you will understand what inspires and motivates me to be a part of DEBRA and champion their research, work and organisation. A few pounds could buy mittens to stop a baby scratching and blistering themselves to the bone. £150 could send a family to a specially adapted holiday home for a much needed break. Your donation brings relief, much needed support and also closer to the research goals to find a cure. This leaflet demonstrates further how DEBRA help.
2013 will see me continue with challenges and fundraising specifically for DEBRA but with a special twist. Why not join me?
Do have a look at the other DEBRA events and enter. It's not all about running, golf, walking or cycling. You can be as inventive and imaginative in your ideas as you dare. From a simple coffee morning to Pamper evening or host a products evening through to a 24 hour endurance event.
If you have some spare time why not also consider being a volunteer for DEBRA, at an event, shop of one of the offices. Why not set up a fundraising group? Whatever you can do, you will have fun and know you are making a world of difference.
Don't forget to let DEBRA know what you are doing so we can update the newsletter, Facebook and Twitter!
There are a number of DEBRA Charity Shops too. They are always looking for good quality items to sell. They are on Facebook and Twitter!
With thanks to the website and publications of www.debra.org.uk for key information and references
