After successfully becoming winner one in our recent Facebook Competition to win 100 wristbands, Red Robin Trust co−founder Charlotte Anwyll, from Leicestershire, tells us how a few silicone bands will go a long way in helping them raise awareness.
Pictured left − Fundraising at the Great North Run − Charlotte, husband Mathew, sons Oliver and Joey, and friends Ben and Ruby.
What is the Red Robin Trust
“The Red Robin Trust was founded in September 2014 by myself and Sarah Smith. We came together through the Internet after both our children were diagnosed with rare conditions known as Maffucci Syndrome and Ollier’s Disease.
“After realising families affected by the condition needed an outlet for support, I launched our website www.maffucciandolliers.co.uk to provide information and allow people to share experiences, which has now become the Maffucci and Ollier’s Association and organises annual conferences for individuals, families and professionals.
“This was closely followed by Red Robin Trust to fundraise for research, helping parents get the answers they so desperately need.
“We are now looking to apply for charitable status and with our passion and drive, hope to provide a better future for everyone affected by these conditions.
“We chose a red robin to represent the hope we have to raise awareness and offer as much support as possible.”
How Will silicone wristbands from the ID Band Co Help You
“The wristbands will be sold and worn by our supporters and funds will go towards the work of the Red Robin Trust.
“I was absolutely over the moon when we won, I didn’t think we would as we are so new. Another great success to add to the work we are doing. The support has been amazing
“In the future we will also look into medical ID wristbands for people with Maffucci and Ollier’s disease.”
What is Maffucci Syndrome and Ollier’s Disease
“Ollier’s disease affects just one in 100,000 people and Maffucci Syndrome is even rarer. These conditions are characterised by multiple enchondromas which can affect any bone in the body, often long bones in the legs and smaller ones in your feet and hands.”
“Enchondromas are a type of benign bone tumour that originates from cartilage. As we grow the cartilage we have should be turning into bone, with these conditions this does not happen, causing bones to look bent or crooked. Tumours can become large and cause weakness to the affected bone, leading to fractures or slowing the growth in these areas.
“Living with these conditions can vary for each individual. Once diagnosed treatment can vary across the world. With no cures, limited funding for research, very little information, support and no clear medical protocol in place, it can feel like there are no answers to many questions. ”
What Do Families Affected by These Conditions Need
“With having such a rare condition, people often feel isolated. We hope the trust can change this.
“There is also a need for a medical protocol and with a good research programme we hope to find answers, treatment, prevention and cure.”
How Have the Conditions Affected you and Sarah
“I have two young boys and in 2012 my eldest son Oliver was diagnosed with Maffucci Sydrome Ollier’s Disease in his right hand at just three years old. Being told that there was a high chance of malignancy was like being hit by a truck.
“The stories and information was minimal and the realisation that we were dealing with something really rare soon became apparent.
“Oliver had an MRI scan, to check his bones and organs and luckily the results came back clear, which was fantastic news. Now five years old, Oliver is happy, outgoing and full of energy. But our battle is far from over and he’ll need continuous scans and x−rays as he grows. With him being so young we still don’t know if there will be any change from his current physical condition.
“When we look back now, we can see how much extra pressure and stress was put on us, the things we read and saw were dated, they didn’t help with the worry. It wasn’t until we found people that we knew what we needed to do and the questions we needed to ask.
“Sarah went through a similar story when her middle daughter Iris was diagnosed also at the age of three. She’s spent the last six years looking for answers, advice, prognosis, battling with schools and liaising with health professionals to make life what it should be for a nine year old.
“She is in lots of pain and struggles with school and home life. Her relief comes from hot baths, regular use of her splint and sling and pain relief medicine.
“Iris’s results are currently being compiled so we’ve all got our fingers crossed. ”
What are Red Robin Trust’s Aims for the Future?
“We aim to
- – Raise overall awareness and profile of Maffucci Syndrome and Ollier’s Disease.
- – Generate income for the Trust.
- – Encourage and generate support for fund raising activities for the Trust.
- – Motivate and support volunteers who may wish to be involved with helping the Trust.
- – Help enhance knowledge, accurate diagnosis and recognition of Maffucci Syndrome and Ollier’s Disease.
- – Provide on-going and up-to-date information and support for those with Maffucci Syndrome and Ollier’s Disease and their families.
- – Encourage a greater worldwide sharing of existing knowledge of Maffucci Syndrome and Ollier’s Disease.”