Newsletter
Volume 1, Issue 1
April 2015
Red Robin Trust launches first newsletter!
Welcome
redrobintrust.org
Welcome to the first edition of the Red Robin Trust Newsletter, with
support from so many since our launch in September 2014 we
wanted to share with you all the news from our fantastic fundraisers
who are supporting and donating, to show our gratitude to each and
every one of you and to keep you updated on the Red Robin Trust.
The newsletter will be created on a quarterly basis, please get in
touch with anything you wish us to add into the newsletters or if you
would like any further information about anything in this quarters
newsletter.
Huge thanks to all that have supported us it is amazing to see how
many things have been organised in aid of the Red Robin Trust.
Happy fundraising from The Red Robin Trust Team!
The Red Robin Trust launched on 1st September 2014, within 6 weeks due to overwhelming
aid and support we were able to apply for charitable status and we became a Registered
Charity in England and Wales in January 2015. We are now the first Charity to be specifically
linked to and aiding Maffucci Syndrome and Ollier’s Disease!!
February 2015 Hope campaign supporters!
What we’ve been up to!

Achieving charitable status

Hope campaign

Raising money

New corporate support

New donation methods
NEWSLETTER
Page 2
Hope campaign– February 2015
28th February 2015 was Rare Disease Day, recognised worldwide as a day to
support and raise awareness of Rare Diseases.
The Red Robin Trust launched their first campaign, #Ihavehope . Where through
social media, individuals showed their support to raising awareness of Maffucci
Syndrome and Ollier’s Disease by uploading their fingers crossed selfie
representing our individual hope for the future and our unity of belief for answers
being found for the future.
We had selfies of support from all over the world from England to France, America
to Shanghai. We had the youngest selfie from Lily who was only 6 weeks old and
the most unique taken by Ed Cooper at the Millennium Stadium Cardiff for the
Wales Vs England Rugby Match.
Thank you to everyone who took the time to support our Hope Campaign
for 2015 Rare Disease Day!
To see how you have helped we can confirm the Hope Campaign has;
- Raised awareness of Maffucci Syndrome and Ollier's Disease
- Made people aware of 'The Maffucci & Ollier's Association' and 'Red
Robin Trust ' (don’t forget to like our facebook pages to stay updated on
news, future events and activities)
- Raised over £200 to date for the Red Robin Trust to support these conditions
- Brought together individuals and families working together to share our hope for
the future.
- Inspired others to organise their own events to support the Red Robin Trust.
VOLUME 1, ISSUE 1
Page 3
With so much to fit into our first newsletter we didn’t want to miss any of those who have
fundraised in aid of the Red Robin Trust and helped us to be where we are today
a huge thank you to…..
Donations in lieu of Christmas Cards from the Support Specialist Department at
Egerton Rothesay School in Berkhamsted, Catherine Lavery and Sarah Swinhoe.
Tony and Annie Thurling choosing Wedding gifts as donations to the Red Robin Trust.
Ice Bucket Challenges from from Oliver Jermaine, Debbie & Will
Gilchrist and Chris & Sharon Foskett.
Christmas Cards made and sold by Iris-May in
Bristol and Eleanor Anwyll in County Durham.
Chosen Charity for Shoe Tappers in Bedminster
Bristol, Sharon's Hair Salon in Bishopsworth
Bristol and Sherburn Slimming World in County Durham.
A bucket collection organised at Bristol City Football Club.
Sponsored events from Jane Brinkley and
Patricia Hardman and their sponsored walks
to the Junior and Adult BUPA Great North
Run participants Ruby Clarke, Charlotte,
Oliver and Joey Anwyll and to Abi Moorcock,
Sarah and Dunc who participated in the
Reading Half Marathon.
A muscial concert from the Church of St Leonards and
Longwell Green Orchestra Concert
Bracelet Merchandise organised by Tor Leak Jones.
Handmade Red Robins organised
by Ric Canham.
Corporate donations from WPS.
Itron- dress red day and quiz night.
Rotary donations from Rotary Winton Vale.
A raffle organised by the Nailsea Mark Lodge Masons…..and of course for the donations,
sponsorship and text donations from many, many others – each and every one of you
have helped the Red Robin Trust to develop our work further in supporting the conditions
Maffucci Syndrome and Ollier’s Disease.
VOLUME 1, ISSUE 1
Dates for your diary
Saturday 9th May 2015 – The Ollier’s and Maffucci Association, France.
Annual Meeting to be held in Paris.
Saturday 3rd October 2015 - The Maffucci & Ollier's Association, England
Annual Conference 2015
Venue: Novotel Wembley, Wembley, London, UK
For more details please email admin@maffucciandolliers.co.uk
Planned Fundraising Activities
Sunday 12th April 2015 – Brighton Marathon
Jack Moody will be running in the Brighton
Marathon in memory of his father who had Ollier’s Disease.
https://mydonate.bt.com/fundraisers/jackmoody
Friday 24th – Sunday 26th April 2015 – Elephant & Castle Darts Marathon,
Hurst, Berkshire
A team of darts athletes will be limbering up for a mammoth marathon to
complete 26 miles or approx 8,908 trips up and down the oche in aid of
the Red Robin Trust.
https://mydonate.bt.com/fundraisers/dartsmarathon
Saturday 30th May 2015 – Albert Village Junior Football Club,
Donisthorpe, Derbyshire
Annual Football Presentation and Fun Day in aid of Red Robin
Trust
Saturday 12th and Sunday 13th September 2015 – Junior and
Adult Great North Run, Newcastle,
Our sporty trustees Mathew and Charlotte Anwyll, their
children Oliver and Joey, along with Philip Anwyll, Ruby
Clarke and Chloe Richardson will be participating in the
world’s leading half marathon and Junior Run to support the Red Robin Trust after
their son Oliver’s diagnosis in 2012.
VOLUME 1, ISSUE 1
Trust news….
We are delighted to congratulate one of our trustees Tony and his new wife
Anne on their beautiful Wedding. It was a lovely ceremony at their local church
with a stunning afternoon tea to follow! We wish them much happiness and
love on their new journey together.
To find out more about supporting the Red Robin Trust
please visit www.redrobintrust.org
or email admin@redrobintrust.org
Follow us on Facebook – Red Robin Trust
To find out more about Maffucci Syndrome and Ollier’s Disease please visit
www.maffucciandolliers.co.uk
Follow us on Facebook – Maffucci Syndrome and Ollier’s Disease Website
We now have many ways to donate
Bank transfer
Online donations
Easyfundraising.org
Justtextgiving
Visit our website for more details on donating and ideas on organising your own
fundraising event in aid of the Red Robin Trust.
Outside of England and Wales and want to
fundraise?.....No problem!
We have had many people asking outside England and Wales if they can support
the Red Robin Trust and this is not a problem.
All you need to do is follow your own country's guidelines for
Fundraising for a Charity outside of your own.
If you require any support or guidance with your fundraising please do not hesitate
to contact us; admin@redrobintrust.org