DEBRA News - Summer 2020 EB Story Fundraising in memory of our son Dylan
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DEBRA News
The magazine for DEBRA supporters
Summer 2020
EB Story
Fundraising in memory of our son Dylan
The Difference you Make
Looking back at your 2019 fundraising successes
Lockdown Challengers
How you have been fighting EB at home
Welcome The Difference you
Social
/DEBRACharity
Achievements
@CharityDEBRA
Make
@CharityDEBRA
www.debra.org.uk
Welcome to the first print edition of
DEBRA News in 2020. I very much
hope that this finds you and your
loved ones safe and well during
Useful Contacts what has been a challenging first
half of the year for everyone.
Investing in a future free of EB
Magazine & Marketing Enquiries
01344 771961 (option 5) We have a vision of a world where no one suffers from EB. In 2019, you bought and donated £2.12
magazine@debra.org.uk As we emerge from lockdown,
our shops have re-opened and million in DEBRA shops and raised £1.67 million through fundraising activities meaning we could do
the DEBRA Golf Society is back, even more for the EB Community. Here are some of the top achievements from last year which you made
Fundraising Support with the appropriate social possible – thank you.
01344 771961 (option 3) distancing measures in place. Our
fundraising@debra.org.uk commitments to funding healthcare, For every £1 raised 84p spent on
support and research continue £3.11m spent on charitable activities in
charitable activities or designated for
Corporate Fundraising Support so we are incredibly grateful for 2019
future charitable spend
01344 771961 (option 3) your generosity as we continue to
jenny.jackson@debra.org.uk #FightEB together through this incredibly difficult period.
A further £500k approved for charitable Total net income £3.9m, an
Event Enquiries In this edition, I’m delighted to be able to share with you the many spend on two new research projects increase of 13% from 2018
achievements of DEBRA and the EB Community so far this year and
01344 771961 (option 3) highlight the difference your contribution makes to their lives every
events@debra.org.uk day. In May we received news that three new babies were born with
Recessive Dystrophic EB. Thanks to you, these families are not facing
Volunteering Enquiries the stark reality of EB alone. The EB Nursing Teams, which you help to Your generous donations go towards funding four key areas:
01344 771961 (option 7) part fund and the DEBRA Community Support Team, which you help fund
volunteering@debra.org.uk 100%, are able to carry out essential home visits and provide remote
support - which is an enormous source of comfort, particularly for the Research Community Support
Contact the Community Support newly diagnosed.
& Membership Team if you suffer Together we strive to find effective treatments and Together we offer financial help, information,
from EB and would like further In the last few months over £14,000 was donated to us following ‘The cures for the EB Community to improve emotional support, respite breaks, events and
Boy Whose Skin Fell Off’ documentary which aired on Channel 4
support, advice or information. their quality of life..In 2019: more to the EB Community. In 2019:
featuring the remarkable Jonny Kennedy. We have also received over
01344 771961 (option 1) £40,000 in response to two Community Support appeals. On pages 6 and
membership@debra.org.uk 7 you can see just how valuable your support is to the EB Community. £686k committed to new research projects 327 home visits took place
Please note our new office ongoing research projects facilitated in
address:
Wishing you all a very pleasant summer. 16 755 holiday days were taken in DEBRA’s
the UK respite holiday homes
DEBRA, The Capitol Building, Hugh Thompson
Oldbury, Bracknell, Berkshire,
RG12 8FZ Director of Fundraising £810k spent on other research activities 334 support grants were awarded
P.S. Check out the back page to learn about how you can leave a gift in
your Will. If the time is ever right to remember a charity then please do Healthcare International Collaboration
consider DEBRA.
Contents Together we deliver an enhanced EB healthcare Together we work globally to coordinate research
service in partnership with the NHS through EB grants, fund international training, share expertise
Living with EB Acheivements International News clinical and multi-disciplinary teams. We also and best practice, bringing us closer to finding
4. The Talbot’s Story 3. The Difference you Make 15. EB World Congress provided training for clinical professionals. In 2019: effective treatments and a cure for EB. In 2019:
12. Being an EB Carer - 5. Corporate Partnerships: Get Involved 2,000 patients were supported by EB specialists 48 the total number of DEBRA groups worldwide
Katie and Sham’s Stories The Access Group
16. DEBRA Retail Stores Return 17
10. Lockdown Challengers 17 specialist EB training grants were given global EB research sites funded in 2019
What you fund 17. DEBRA Golf is Back
8. COVID-19 Support for the 14. Old Firm Unite to
18. 100km Challenge and Up to of specialist EB nurses, costs were 8 international clinical best practice
#FightEB guidelines, funded by the UK
EB Community We Want your Ideas 25% covered by DEBRA
2 DEBRA News: Summer 2020 DEBRA News: Summer 2020 3
The Talbot’s Story
EB Stories
EB Stoires
We are fighting EB for Dylan
In 2018, we learnt Karen was
When our beautiful baby boy pregnant. EB is inherited and we
Dylan was born in June 2017, he were both carriers of the gene and
was immediately rushed off to this meant it was likely our baby
the Special Care Baby Unit. We would have the same type of EB
were told he had Epidermolysis Dylan had.
Bullosa (EB) and that we couldn’t
hold him in case we caused his Thanks to advances in EB
skin to blister. research and with funding
from DEBRA, we were able to
On his second day of being in the test our baby for EB before
world, Dylan had a skin biopsy taken she was born.
to find out what type of EB he had,
but had an agonising two week Knowing we would not have to see
wait for the results. When the EB our new-born go through the same
specialists rang from Great Ormond pain and distress Dylan did was a
Street Hospital to say the results massive relief.
were in and they were doing a home
visit that day, we knew something
wasn’t right. That was the day our We had to make some difficult We promised Dylan before he story (see more information on
worlds fell apart - Dylan was given decisions about end of life care as passed away that we would page 6).
the terminal diagnosis of Junctional well as managing his deteriorating always continue to #FightEB
Generalised Severe EB. condition. This involved the loss of so we do all we can to support We want to say the
skin, managing open wounds and DEBRA. He inspired us and biggest thank you, to every
The body needs a certain amount pain medication. so many wonderful people to single person who helps
of protein to heal, Dylan had none. fundraise and take on personal raise awareness of EB and
His blisters were both external, on Our DEBRA Community challenges to raise awareness fundraises for DEBRA.
the skin, and internal. 90% of babies Support Manager, Rowena, and funds. Our family and
born with Junctional EB don’t live offered vital emotional friends have supported us in our It is comforting to know that we
to see their first birthday, after a support for us as a family fundraising efforts in so many are able to help others with EB in
healthy and normal pregnancy we ways from taking part in sporting their lives.
were both in shock and completely Rowena made detailed notes challenges to hosting music
heartbroken. during medical appointments so concerts and craft sales. Simon We will always remember Dylan
we could just listen to how we was even crazy enough to give and treasure the memories we had
could care best for Dylan. DEBRA the London Marathon a go (with with him. Research into EB is so
also sourced and helped fund a lot less training than he should very important and gives us hope
medical equipment (specialised have done!) that one day there will be a cure
nappies, EB friendly baby clothes into this devastating condition.
and air cushions) which took away Simon was also extremely
the additional stress and meant we lucky to have had the support Karen and Simon Talbot
could spend precious time with our of his work behind him and his
son. colleagues voted for DEBRA to Parents of Dylan Talbot who
become Charity of the Year in passed away from JEB aged 3
Despite the pain he was in, Dylan 2019 after learning about Dylan’s months and 1 day old
was an amazingly calm and happy
baby and brought so much joy to
our lives. He was with us for three Our baby girl was born on 4
months and one day before he November 2018, EB free. We named About Junctional EB
passed away – every day he was her Katie Rose Talbot after the EB
10%
with us was so special. Nurse Specialist at Great Ormond There are three main types of EB - Simplex, Junctional and
Street Hospital – Katie Plevey. She Dystrophic. Junctional Epidermolysis Bullosa (JEB) is the most severe
DEBRA continues to support us was such a big part of family life type of EB. EB is characterised by lack of adhesion of the skin through
today. After Dylan passed away with Dylan that we wanted her to be the basement membrane (found between the dermis and epidermis).
we were offered bereavement forever part of our family. Rose is also of EB patients JEB is inherited recessively which means that the parents are both
counselling and have taken respite Dylan’s birth month flower, so her have JEB carriers, often unknowingly, and do not show physical signs of the skin
condition - the birth of a child with JEB is therefore totally unexpected.
in a DEBRA funded holiday home. name is very special.
4 DEBRA News: Summer 2020 DEBRA News: Summer 2020 5
Corporate Partners
Corporate case study - S.A.C Construction
S.A.C is a family construction firm. Several members of staff have EB and this inspired the company to
Membership
Achievements
Achievements
take on a year of fundraising to support DEBRA. Employees really pulled together and held many events
and took on challenges including the Yorkshire 3 Peaks Challenge.
Working together to make a difference, reach mutual goals and The partnership with DEBRA:
#FightEB • Raised a fantastic £10,000 to #FightEB
Our corporate partners play a vital role in helping us #FightEB. We pride ourselves on offering mutually • Encouraged S.A.C to engage with their
beneficial partnerships to corporate organisations. This can have a positive impact on your company and suppliers to support DEBRA fundraising
staff, as well supporting our work with the EB Community, as we drive towards finding a cure. efforts
• Raised awareness of EB within the local
Why should your company support DEBRA? community and S.A.C’s corporate network
• Assisted S.A.C with team building activities
DEBRA is the national charity that supports people living with EB, a painful genetic skin condition which causes to develop ideas of how best to support
unstoppable internal and external blisters and skin so fragile it tears at the slightest touch. It can be devastating DEBRA
to live with and tragically, certain types of EB can be fatal. An estimated 5,000 people live with EB in the UK and
500,000 worldwide.
There is no cure, but with the support of our partnerships, donors and charity shops we are committed to
Corporate case study - The Access Group raised £281,488
funding pioneering research, specialist healthcare, vital community support, international collaboration and best After learning one of their employees, Simon Talbot, had lost his son to EB (read his story on page 4), The
practice. Access Group staff voted DEBRA as their charity of the year for 2019. Together we grew a partnership which
smashed all expectations.
What are your company’s core objectives? What do your staff really The partnership with DEBRA: To see our employees support Simon
value? What is your vision? How can we help you achieve success? and his family, to turn a tragedy into
• Engaged and motivated staff - everyone got involved, hope for the future and to enable
including the Board of Directors DEBRA to support other EB sufferers is
Not questions that you would necessarily expect a charity incredibly inspiring and humbling. It has
Benefits of becoming a to ask when building corporate partnerships but here at • Charity Champions were nominated for each of the Access been a phenomenal year working with
DEBRA Corporate Partner: DEBRA we pride ourselves on developing meaningful Group’s locations – the first time this had been done for a
DEBRA. From marathons to tuck shops,
partnerships with companies which are established around a Charity of the Year and proved very successful
shared mutual vision. volunteering to abstaining from alcohol
• Enhanced employee relations • Skills were shared, hours were volunteered and miles were – everyone across the business has
and retention Please visit page 21 to see how organisations and their run played a part in helping to #FightEB.
employees have helped us to #FightEB
CEO, The Access Group
• Smashed fundraising target and raised an incredible
• Team building opportunities £281,488 to #FightEB in memory of Simon’s son, Dylan
• PR opportunities and positive
brand association
• Partnership beyond
fundraising
• Positive environmental
impact
• ‘Feel good factor’ - knowing
you are making a life-changing
difference to the EB Community Become a corporate partner and #FightEB
Just half an hour of your time could make a difference to your company and the EB Community – get in
touch with DEBRA’s Head of Corporate Partnerships for an initial discussion today.
Please visit page 21 to see how organisations and their employees have helped us to #FightEB Jenny.Jackson@debra.org.uk or 07768 402370
and learn about how you can get involved and become a DEBRA corporate partner.
6 DEBRA News: Summer 2020 DEBRA News: Summer 2020 7
What you Fund
What
Achievements
You Fund
Community Support During Lockdown
How the Community Support Team have adapted to serve the EB Community through the COVID-19 crisis
The demand of DEBRA’s support We’d like to share with you two Aaron’s story: Virtual Get Togethers
services during the phases of UK stories from early in lockdown that
lockdown naturally increased, simply wouldn’t have been possible Being out of work and feeling A new trial of virtual support groups
with many members of the EB without your help. unable to provide for our son, has recently been launched for
Community classified as vulnerable with EB DEBRA Members, helping those who
and needing to take the precaution Matt’s story: are alone or feel isolated to connect
of self-isolating or shielding for a Aaron’s son, Simon, has Recessive back the EB Community.
period of at least 14 weeks. The struggle of shopping and Dystrophic EB and his wife, Jane,
accessing food during lockdown is his normal carer. Aaron is a self- Meeting weekly, groups of up to 12,
We have transformed our home employed contractor, but has not from all ages and parts of the UK,
visiting Community Support I didn’t think DEBRA been able to find work since the have been providing a listening ear
Team service to telephone based would be able to help me pandemic. Not knowing where and peer to peer support to one other.
support. With your generosity we in this situation. I thought it else to turn, Aaron contacted EB
have been able to reach out to would be ridiculous to ask, Community Support Manager, Thanks to you, the EB
over 1,000 Members and provide but I’m really glad I did. Rowena. Rowena answered the
the necessary help or advice they Now I don’t have to wait in call, she was able to speak to Community are not alone
need. including 3 families who the really long queues and Aaron about a variety of ways their
had children born with Reccessive risk blistering my feet. family could receive support to
Dystrophic EB in May. We have also help in this situation – accessing
allocated 38 emergency support Matt has EB Simplex and doesn’t universal credit and other benefits, It’s just like being with friends in a cafe. It’s really relaxing. I look forward
DEBRA toDEBRA
it.
Member,Member,
JemimahNadia
grants so those facing financial normally consider himself to be receiving utility reductions/grants It’s saved my sanity.
hardship due to Covid-19 can vulnerable. However, waiting in and more. Nadia, DEBRA Member
afford to feed themselves and their the long supermarket queues, was
families. causing painful blisters on his feet Rowena was also able to provide
I took part to see other people with EB as I hardly speak to others with my EB clinic being
and he hadn’t managed to get an a non-judgemental, listening
Key facts online delivery slot. ear to Jane who was struggling cancelled due to Covid 19. I’ve met new friends and seen old friends that I haven’t spoken
with anxiety and feeling isolated. to for a long time. It’s also been good to meet people from your local area that you might
Members have Stuck knowing what to do, Matt Rowena recommended some not have known about.
been contacted contacted DEBRA after reading meditation apps and online Jemimah, DEBRA Member
1000+ by the Community
Support Team
one of our weekly emails. He spoke
with Victoria, his EB Community
counselling resources for further
support. Rowena now has
since the start of Support Manager, who suggested scheduled weekly calls with the
lockdown he accessed the shop times family to check in.
dedicated for vulnerable people Where your money goes:
Emergency by showing his blue badge holder It’s incredibly scary
support grants and ‘I have EB’ card. Matt took how quickly things can As well as funding Community Support Services, we are also committed to funding pioneering research,
38 have been
provided to
Victoria’s advice and was able to
access the dedicated hours at this
turnaround. One minute
everything was normal and
specialist healthcare, international collaboration and best practice. We have a vision of a world when no one
suffers from EB, until then, we are striving to improve the quality of life for the EB Community here and now.
Members since local supermarket.. the next our world came Thank you for your ongoing support to help the EB Community and to #FightEB
March to a scary realisation that
we might not be able to Pioneering Research Community Support
Families of new provide for ourselves or
babies born with even our son. That is the
3 EB in May have
been supported
*Names have been changed for
anonymity of our Members
worst feeling in the world.
Rowena’s help really
Specialist Healthcare International Best Practice
by the Team saved us, practically and
emotionally.
8 DEBRA News: Summer 2020 DEBRA News: Summer 2020 9
Lockdown Challengers
Membership
Achievements
Achievements
Brave fundraising heroes have been fighting EB during lockdown James Illman’s Cycle Challenge
Many of our fantastic fundraisers had to use their imaginations to come up with some innovative, socially One of the most extreme challenges during lockdown was
distanced challenges to complete during lockdown. The restrictions did not stop people taking on a variety taken on by James Illman as his fundraising reached new
of brave (and wacky!) challenges as they had to think outside the box, to take on tasks that could be at heights during the sunny weather in May.
home incorporated into their daily exercise routine. Vital funds were raised which will directly help the EB
Community. 8,800m completed in one day!
James successfully cycled the height of Mount Everest, an
impressive feat of over 8,800m that was done in one day by
We wanted to take this opportunity to say a BIG thank you to anyone who fundraised, especially continuously riding up and down Aston Hill, Buckinghamshire.
through these difficult months, as without you the EB Community may have gone unsupported.
The creativity, hard work and dedication you show constantly leaves us in awe - thank you! £1,300 raised to #FightEB
James has EB himself and is determined to find a cure
to help others who also live with the condition and has
previously fundraised for DEBRA by running the hottest ever
Mason White’s Lockdown Challenge London Marathon in 2018. James’ incredible hard work and
creativity allowed him to raise over £1,300 to support the EB
Mason, aged 11, has RDEB and is Raising EB awareness Community.
faced with his skin blistering daily
but he never let his own struggles Mason’s Lockdown Challenge
stop him from completing his received some high-profile attention 2.6 Challenge
goals. Alongside many others in too. Mason and his mum Kerry
the EB Community, Mason, faced got the chance to speak with our Throughout April and May we joined with other charities by challenging supporters to be creative in coming up
12 weeks at home shielding, giving Royal patron, HRH Countess of with a challenge involving the numbers 2 and 6. This could be anything from running 26 miles, cycling 2.6km or
him and his family the chance to Wessex, over a video call. Actor baking 26 cupcakes- the possibilities were endless!
take on some different fundraising Tom Holland and, one of Mason’s
from home. boxing heroes, Tyson Fury. Graeme Jamie White, aged 3 completes 26 laps round his garden
Souness, ex-footballer and DEBRA
Mason got creative and decided to Vice President, even joined Mason
take on a different challenge every by battling him to complete as many Jamie White who at just 3 years old took on the task of walking 26 laps round
day from the comfort of his own sit-ups as he could in a minute! his garden – a big challenge for little legs! Jamie has a severe form of EBS (read
living room, for the entire month his full story on page 14), that causes his skin to form up to 100 severe blisters
of May. Mason raised money for A phenominal £14,000 raised in a single day.
the EB nursing service at Great
Ormond Street Hospital (GOSH) Despite facing an increased Despite his constant pain Jamie, who only learnt to walk 5 months ago,
who are part funded by DEBRA. ammount of pain and discomfort, completed 26 laps of his garden in just one week. Jamie is such an inspiration,
He pushed himself to take on a Mason pushed on through the heat as he pushed himself to help other EB children like him, raising an incredible
whole range of sporting challenges and pain, to complete his Lockdown £1,303 in the process!
from doing the splits to sit-ups, challenge and raised over £14,000
from shooting basketball hoops to fund GOSH nurses!
to doing keepy-uppys all from his
own home. Join us online
Thank you for supporting our lockdown hereos on social media by
engaging with our posts. We really do appreciate your efforts in helping
us raise awareness of EB. You can see inpiring videos and posts from
our lockdown heroes on our social media pages.
To stay up to date on all the latest DEBRA information, followus on
Facebook, Twitter and Instagram. Don’t foget to like our posts and
share them with your online community.
@CharityDEBRA /DEBRACharity @CharityDEBRA
10 DEBRA News: Summer 2020 DEBRA News: Summer 2020 11
Being an EB Carer Fundraising for Jamie
Membership
Living with EB
I want people to have a broader knowledge of EB so we
In February 2020, Katie don’t feel as isolated and people don’t question the wounds
White and her family set up a Jamie has and the dressings he wears. It’s a nice feeling
Katie White and Shams Shamsan’s story community fundraising group
to be understood. I had negative energy that I wanted to
in support of Jamie called the
500,000 people worldwide ‘South Staffordshire Friends of turn into a positive outcome. Focusing on fundraising and
suffer from EB, but that figure DEBRA’ and have already raised raising awareness really helped as it feels like I’m doing
does not include the lives a fantastic £2,000. They aim to something to help. The kindness and generosity of my local
of those who are indirectly raise awareness of EB in their community is heart-warming and by raising EB awareness
effected by the condition, such local community and ultimately fun and funds, I live in hope that effective treatments and a
as friend’s and family members. research. The money raised from cure will be found.
the Group will go directly towards
We want to thank all of the amazing research into EB Simplex, so DEBRA Member, Katie White
carers who spend their days that hopefully one day Jamie can South Staffordshire Friends of DEBRA
looking after the wellbeing of the benefit from new treatments.
EB Community, whether formally
as part of a health organisation or
informally as a relative caring for a
family member. We also recognise Shams Story: Being a young EB carer
and appreciate those carers who
are looking after people with living Nora aged 5, who was born with Recessive Dystrophic EB, lives in London with her elder sister, Shams.
with other long-term conditions. They are one of the many whose families receive support from DEBRA through having regular visits from
their Community Support Manager, Alawiye, who spends time with the family helping them, practically and
We wanted to take this opportunity
to shine a spotlight on some of the
Katie’s Story: Being a The most difficult thing
personally. Throughout their time together Alawiye has recognised the important role that Shams who is just 7,
plays in caring for her younger sister, Nora.
wonderful people caring for some carer to my son, Jamie about living with EB is
our DEBRA Members. seeing your child in pain, Shams and Nora have a special bond as sisters, as they both share the daily struggles that come with living
JaJ Jamie has generalised severe knowing that the care you with EB. Shams is always on hand to encourage Nora when she finds things challenging, like taking medication.
EBS and was born with no skin on are giving is causing so
his feet, knees and hands, where much distress. There is often anxiety for Nora surrounding bath and mealtimes, as they can cause her greater discomfort with
there was intact skin, it blistered. her blistering skin. During these times, Shams is around to distract her younger sister by making her laugh to try
It was so hard to bond.For the first The support I have received from and take her mind away from the constant pain.
6 months I couldn’t hold my baby DEBRA has been outstanding and .
and he round the clock morphine. makes a real difference.DEBRA
Since these horrendous days, we as has provided me with a changing
a family have come a very long way. table where I keep all the dressings
Life is in no way what we planned and has signposted me to
but caring for Jamie and his EB has disability living allowance to help
become the new normal. soften the blow of not being able
to return to work as I am now a full
After Jamie was born, I was time carer.
immediately seen by my EB nurse,
Victoria, who then visited very Meeting others with EB
frequently at home. through DEBRA has made
my outlook on the future
Katie and Matt White from Our EB nurse was, and less daunting.
Staffordshire are parents to 3-year- is, amazing!
old Jamie. Jamie has generalised Seeing children with EB playing
severe EB Simplex (EBS). Jamie Jamie has a full skin check every day, happily and managing daily
requires a full skin check daily which involves me lancing all blisters activities gave me positivity and
and typically has thirty to forty that have occurred overnight. I dress hope. The DEBRA days give me a
blisters a day which require all the wounds and put protective boost of mental energy I so often
lancing and dressings, a time- bandages on before dressing him neeI feel extremely proud and in
consuming process. When Jamie as well as giving him pain killers. awe of Jamie, his happiness and
was diagnosed it was a massive The daily routine is quite structured joy keeps me motivated to stay
shock, as there was no history of to ensure he always feels safe and strong. I am keeping positive that
EB in their family. Katie can no secure. He has his large dose of Jamie will improve with age and
longer return to her job as a nurse morphine before the evening meal so become less fragile so his pain
as she is required to stay at home that he’s ready for his bath and can levels will reduce.
to provide round the clock care for cope with more dressing changes.
Jamie. Katie shares their story.
12 DEBRA News: Summer 2020 DEBRA News: Summer 2020 13
Old Firm Unite to EB World Congress
News
Membership
Membership
Achievements
#FightEB
International
Working collaboratively to find effective treatments and cures for EB
In January 2020 DEBRA UK held Day 3: EB Clinical
Scottish football legend and sports personality Graeme Souness a flagship EB World Congress Management
became DEBRA Vice president in August 2019 after he attended (EBWC) in London, predominantly
a DEBRA fundraising event and was inspired by 11 year old Isla funded by your generous support. The third day of the conference
Grist who lives in Inverness and has Recessive Dystrophic EB. EB2020 brought over 700 focused around the clinical
attendees from 50 countries management of EB. New clinical
After donating his fee for leading the to London, twice the size of any management strategies addressing
Pride Brighton March to fund two previous conference. the major clinical challenges for
year costs for the first Community all EB types were presented as Day 4: EB Community day
Support Manager in Scotland, one of Day 1-2: From basic EB well as recently published clinical
Graeme’s first priorities was to set up research to clinical trials practice guidelines (CPGs) for EB. Members of the global EB
the Old Firm United Dinner, bringing Community, including patients,
Scottish sports personalities together Isla’s story told by her parents The first two days of the The clinical management for EB families and carers were invited
on Sunday 8th March 2020. Rachel and Andy conference focused on current has improved significantly over to join on the last day of EBWC.
advances in EB research.From recent years, and the international They gained practical advice from
This event saw over 500 guests from When Isla came into this world, basic research to clinical trials, and multidisciplinary work on EB leaders about caring for EB,
Scotland’s business and sporting we knew immediately something a huge variety of projects were CPGs ensures wide access to received an update on research
community come together to raise was wrong. She was missing skin presented, illustrating the global information on state of the art and had the opportunity to meet
over £100,000 for two urgently on her hands and feet and was effort to elliminate disease treatment. to further strengthen other people living with EB from
needed research projects – one immediately rushed to the hospital. mechanisms and create new and peer to peer support, gain practical around the world and gain peer to
investigating skin cancer in those For the first six months of her life, effective treatments. Currently, advice from EB leaders about peer support.
with Recessive Dystrophic EB, and
the other investigating spray-on gene
therapy that could eliminate the need
we carried her around on a pillow as
the slightest knock or rub could tear
her skin.
around 30 clinical trials, some late-
phase, are ongoing worldwide,
giving hope that effective
providing life changing care
and developments of future EB
research.
4
We’re hugely excited and iinspired
by the research discussed at
for invasive procedures. treatments will become available in EBWC, made possible by your
DEBRA gives us access to specialist the near future. support.
care for Isla and respite in the
I am delighted to be Vice President because I am in a DEBRA holiday homes for the whole
position to bring this charity to the attention of a number family. EB affects every part of EBWC Research Topics
of people who will be able to make a real difference. I was Isla’s life – the continual blistering
appalled at just how cruel and painful the condition is - more causes constant pain and itching as Leading international EB
people need to know about EB. If I can generate the sort well as severe problems eating and researchers gave updates on
of passion that I feel for this cause from a few people that I drinking. the status of a range of research
know then we could make a huge impact on the research into
topics including:
EB – research that not only will help those living with this now EB stops me from
but could even lead to a cure. having a normal life, and that
is what I want, Isla says. • Cell therapies
Graeme Souness, DEBRA Vice President
Trying to do normal activities • Protein therapies
is difficult. EB brings daily
challenges that we have to find • Gene therapies
different solutions to. We have two
trampolines in our garden. One for • Inflammation management
Emily (Isla’s older sister) and one
for Isla so that she can still join in
• Fibrosis management
without getting hurt.
Life with EB is a different life. • Cancer care
DEBRA is funding pioneering
research into effective treatments To watch the research videos and
and a cure for EB. We’re grateful to view photos from the event visit:
Graeme fundraising to make this www.ebworldcongress.org
happen and help give Isla the pain- media/photos/
free life she so desperately wants.
14 DEBRA News: Summer 2020 DEBRA News: Summer 2020 15
Retail Returns DEBRA Golf is Back
Membership
Membership
Involved
Get Involved
Get Involved
DEBRA charity stores have reopened The DEBRA Golf Society is ready to safely get back on the course
Get
DEBRA Golf Society provides significant income as well as a great
We are pleased to announce that after weeks of shutting the doors on our charity shops due to the global way of introducing new people to the charity. We were due to start
pandemic we have been able to re-open many of our stores across the UK. It’s early days but the response our 2020 schedule on 8 April at Hankley Common Golf Club in Surrey,
so far has been really encouraging with a successful first few weeks of sales across all stores and a record but sadly COVID-19 got in our way. However, we restarted the season
volume of donations. on 17 July at Ferndown and were eager to tee off!
Steve Rider, TV personality and
Great to be open DEBRA Golf Society Vice-President ‘Golf isn’t back until the clubhouse
kindly wrote the article below to is fully open, and the pros shop
In 2019 over £2 million was bought, support DEBRA in welcoming our can sell bits and pieces and
sold and donated in DEBRA members back to the golf course: organisations like DEBRA can
Shops, enough to cover the entire get back to raising some much
cost of research into a cure for It was the news we had all needed money.’ And he was right
one whole year. To promote safe been waiting for. Golf is back. I of course. The task now is to make
shopping, you may have spotted headed to the first tee expecting our return to the golf course into
an interview on ITV London Tonight things to be just the same, and a return to the clubhouse, or at
at the DEBRA store in Croydon it was; a high slice that got least a return to the fundraising commentary box in Salford. This will
to emphasise the importance of progressively worse as the round for EB families which is even more be especially sad as it was set to
charity shops and how DEBRA went on. But then there was the important after the events of the be one of Peters last appearances
is continuing to support the EB new normal. We played in pairs. last two months. working at the Masters.
Community while ensuring the My partner wore a mask, which
safety of staff, volunteers and was very appropriate given his It was also a chance to talk to But, as Peter says, Golf isn’t back
customers as we exit lockdown. dodgy handicap, and with no Peter about the resumption of until the clubhouse is open, until
mucking about with bunker rakes golf at the highest level which will then I am sure with the help of
or flags and with some extravagant possibly feature the Masters at yourselves and the ingenuity of
Keeping safe in our shops concessions because you didn’t Augusta in November. So many the DEBRA golf team we can find
want to put you hand in the hole, traditional ingredients, that we some way of making our newly
The safety of our staff, volunteers and customers is our top priority, so we have introduced rigorous new we strolled round in three hours take for granted will be missing, restored playing privileges work
measures to help keep everyone safe and well. This includes: twenty minutes and it was one of in particular the whole springtime for the continuing benefit of the EB
the most enjoyable rounds you can panorama of the Augusta National. Community.
imagine. ‘It could turn out to be absolutely
We are quarantining We are sanitising all We are limiting anything in terms of weather, but
donated stock for furniture and hard the number of So it wasn’t just that golf was I just hope it isn’t played behind The new golfing normal
a minimum of 48 items before they customers in- back, the sport had returned closed doors because it just
hours are put on sale store at one time clearly having re-invented itself in wouldn’t be the Masters.’ As we restart our season, we are
a new streamlined form. I couldn’t doing things a little differently.
wait to ring my good friend Peter Whatever happens at Augusta, We will be minimising contact
We are offering We are reducing Alliss, President of the DEBRA Peter may well have to be by asking players to text scores
12 We are keeping Golf Society and someone who resigned to the fact that he will be and auction bids to us. Golf lends
hand sanitisation opening hours to
our changing is positively evangelical about watching the drama unfold from a itself well to social distancing, so
stations for all 9 3
allow for thorough improving the pace of play. with designated routes around the
rooms closed
customers 6 in-store cleaning course, no touching of flags, no
for the moment
rakes in bunkers and limitations on
numbers in the dining room. we will
Please follow the guidenlines when shopping with us: be back fundraising for DEBRA.
Don’t touch 12
Use Please Join us on the golf course
Social labeled contactless wear a
distancing items or sit
9 3
payment We have recheduled our golf days.
face mask For full details on the courses we
on furniture 6 if possible
will be visiting and upcoming dates
go to: www.debra.org.uk/golf
Visit our website for a full list of our new in-store safety measures and to find out which stores are We are always keen to welcome
new golfers, so please help spread
open near you www.debra.org.uk/shop/intro. We hope to see you soon.
the word to your golfing friends!
16 DEBRA News: Summer 2020 DEBRA News: Summer 2020 17
#FightEB Challenge
I want to invest in a future free of EB
We are grateful for anything you can give to help DEBRA Fight EB. If you would like to make a donation, please fill out this form and
return it to us (Freepost, RTJJ–AKBR–UHGY, DEBRA, The Capitol Building, Oldbury, Bracknell, Berkshire, RG12 8FZ) or visit
www.debra.org.uk/donate - thank you.
Get Involved
I would like give a regular gift: I want to Gift Aid my donation and
Complete 100km throughout August £10 £25 £50 £100 Other: £_____
any donations I make in the future
or have made in the past 4 years
to DEBRA. I am a UK taxpayer and
How does it work? Monthly Quarterly Annually understand that if I pay less Income Tax and/or Capital Gains
You can choose whether you run, walk, cycle or wheel Tax than the amount of Gift Aid claimed on all my donations in
100k throughout August and help to raise vital awareness Please fill out instructions to your bank or building society below.
• Complete 100km throughout that tax year it is my responsibility to pay any difference. Please
for the EB Community at the same time! contact our Gift Aid Team on 01344 771961 if you wish to cancel
August – you can run, walk, I would like give a one off gift:
this declaration, no longer pay sufficient tax, or change your
cycle, skip £10 £25 £50 £100 Other: £_____ name or home address.
You can choose to take this feat on individually or with
your friends and family to collectively reach the goal! Please debit my credit card, debit card or CAF charity card I enclose cash or a cheque made payable to DEBRA
There is a fundraising target of £115 which could pay for • Fundraise £115 - enough to help a
half a year of Community Support for a DEBRA member. DEBRA Member for half a year Name on card Card number
through Community Support
The world may be changing, but the pain that EB services
sufferers face everyday remains the same. You can help Signature Date Expiry date Issue No. Security No.
ensure that the EB Community are supported when they • Help us to be there for the EB / / /
need it most by joining to #FightEB. Community when they need it most
Full name Mobile or phone number
Sign up now Address
You can sign up by visiting www.fighteb.org.uk where you will also receive a
FREE welcome pack including a DEBRA t-shirt and a butterfly badge.
Postcode Email address
We Want Your Ideas
Email
We would like address
to keep in touch, please select how you would like to hear from us: Appeal Code
Email Post Phone MCDN2001
News, campaigns and fundraising activities I would like to learn more about leaving a Gift in my Will to DEBRA.
We respect your privacy and will not pass your details on to any third party without your permission. Full details of DEBRA’s Privacy
Policy can be found at www.debra.org.uk/privacy
Please take part in our supporter survey Instructions for your Bank or Building Society
Please pay DEBRA Direct Debits from the account detailed in this instruction, subject to the safeguards assured by the Direct Debit Gurantee.
Without you, DEBRA would not I understand that this instruction may remain with DEBRA and if so details will be passed electronically to my Bank or Building Society.
exist, so we want to make sure Name(s) of account holder(s) Service user No. Reference (completed by DEBRA)
we are doing everything possible
to share the stories you are most 5 9 9 9 9 4
interested in at the times you want
Bank Building Society No. Sort Code Commencing on (Direct Debits are taken on 15th of the month)
to receive them and how you want
to receive them. Complete the Month Year
survey now.
We would be incredibly grateful to Name and full address of your bank or building society:
know your thoughts via a short, 5 Visit www.surveymonkey.
To the Manger: Bank/Building Society name Address:
minute, online survey with a few co.uk/r/debraviews
questions about how long you to take part. Survey closes
have supported DEBRA and what
interests you most about DEBRA’s on 30 September. Post Code Signature Date
work. All answers are anonymous, / /
but you will be able to share your
contact details if you wanted to The Guarantee is offered by all banks and building societies that accept instructions to pay Direct Debits. If there are any changes to the
discuss your thoughts further. amount, date or frequency of your Direct Debit, DEBRA will notify you in 10 working days in advance of your account being debited or as
otherwise agreed. If you request DEBRA to collect payment, confirmation of the amount and date will be given to you at the time of the
request. If an error is made in the payment of your Direct Debit by DEBRA or your bank or building society you are entitled to a full and
immediate refund or the amount paid from your bank or building society. You can cancel a Direct Debit at any time by simply contacting your
bank or building society. Written confirmation may be required. Please notify us.
18 DEBRA News: Summer 2020 DEBRA News: Summer 2020 19
MCDN2001for people whose
skin doesn’t work
we do
Learn about
DEBRA’s free
Will making service
You can gift just 1% of your Will to charity,
leaving 99% to those you care about most and
making a lasting difference to those devastated by EB
DEBRA is registered as a Charity in England and Wales (1084958) and Scotland (SC039654).
For more information on leaving a gift in your Will visit
Company limited by guarantee registered in England and Wales (4118259).
www.debra.org./making-a-will
DEBRA is the national charity that supports individuals and families affected by Epidermolysis Bullosa (EB)
www.debra.org.uk/freewill
a painful genetic skin blistering condition which, in the worst cases, can be fatal.
A charity registered in England and Wales (1084958) and Scotland (SC039654).
Company limited by guarantee registered in England and Wales (4118259).You can also read
