The mum of a brave Vale youngster warns research into finding a cure for a rare disorder he suffers from will grind to a halt unless more funding is secured.
Lisa French, who runs ROHHAD Association, says the charity will need to raise around £300,000 for fundraising to continue into finding a cure.
Her son Aaron Hunter, 12, has ROHHAD – a rare, life-threatening condition that severely impacts quality of life.
The organisation is leading the way in trying to find a cure after funding a team of top scientists, researchers and physicians from across the world who are currently undergoing vital research.
The cash has been made possible thanks to brave Aaron who has fronted fundraising campaigns which have raised thousands of pounds and melted hearts across the globe.
In 2019, he won the Good Morning Britain Young Fundraiser of the Year accolade and even enlisted the help of Hollywood star Robert Downey Jr, who he proudly calls his friend.
But Lisa says the cash will dry up by the end of the year – saying it is vital research continues as it is close to answering the desperate answers needed.
She said: “It’s vital for us now more than ever because the research is underway and the amazing fundraising efforts secured from our community and country made that possible.
“We have already raised just over £300,000 but because there’s been so little research into ROHHAD, we knew it was going to be a long process and we knew we were going to have to double whatever we raised to allow the research to continue.
“The funding will be finished by the end of the year and in order for us to glean the answers we need, we really need to keep going.”
The team of scientists involved in finding cure is the ROHHAD International Consortium which comprises almost 30 brilliant minds who have come together to solve the mysteries of the condition.
Their mission is to work strategically and collaboratively as clinicians, researchers, charities and families by raising awareness, expediting diagnosis, optimising care and ultimately finding a cure for ROHHAD.
It’s a complex condition affecting approximately one in 73 million people worldwide.
The condition causes previously healthy children to gain weight and have breathing difficulties, as well as other problems.
Although some research has been done looking into genetic causes, it is very limited and it remains unclear whether the syndrome has an underlying genetic cause or whether there are other factors.
Lisa believes it will result in answers during Aaron’s lifetime – something she never imagined possible.
Lisa said: “We had our first ROHHAD international conference for rare disease day and the research team shared their findings.
“There’s some really positive findings across all the projects. But to prove their theories the research needs to continue and that costs money.”
She is urging the community to get behind the charity’s newly launched fundraising efforts, with a glitzy ball and Kiltwalk challenge organised.
A Hollywood Charity Ball will also take place at the Alea casino in Glasgow on Saturday, May 7.
It takes place from 7pm and is £35 per person or £330 for a table of 10.
The ticket price includes a champagne reception, three-course meal and live entertainment featuring singers and comedians.
Lisa said the charity is thrilled to be able to finally organise events after the pandemic stopped them.
She said: “Events are important to our fundraising and we’re really glad we can start that back up again.
“We’ve had a lot of interest in the ball but it’s not fully sold out yet. It will be a fantastic night.
“We’ve had it at the Alea before and we had to do it again there as they are great hosts and only charge us at face value which keeps our costs down.”
The charity is also urging residents to download an app on their phones called Easyfundraising which involves retailers making small donations to a chosen charity of your choice when online shopping.
Anybody wishing to find out more about the fundraising events should visit the ROHHAD Association’s Facebook page.
