Movie star John Hannah is backing an Alexandria family’s battle to push for more research into a rare condition.
Elisabeth and Ian Hunter’s son Aaron was diagnosed with rare ROHHAD syndrome four years ago and, since then, they have made it their mission to fundraise and raise awareness of the condition.
And, while a group of the ROHHAD Association’s supporters were walking the West Highland Way, John Hannah threw his support behind the campaign while he was also taking on the 100-mile feat.
Elisabeth told the Lennox Herald: “They met him close to the end of the walk and got chatting about the charity. John was pretty impressed and wanted us to Tweet the photo of him with the team so he could share it. It’s brilliant.”
ROHHAD Awareness Day is on May 7 and, last week, the charity, which Elisabeth and Ian founded, were spreading messages on social media about the progress they are making in trying to find treatment and a cure for the syndrome which causes previously healthy children to gain weight and have breathing difficulties as well as other problems.
The life-limiting condition is extremely rare, with only around 100 cases determined worldwide.
The charity, which also has backing from Robert Downey Jr, has formed a partnership with a doctor in New York who is researching ROHHAD.
In addition, they are also having crunch meetings regarding awarding funding to research teams.
They are reviewing four applicants and the board of charity trustees will meet to discuss all proposals and make a decision in June on which have been successful.
Elisabeth added: “Every applicant has submitted proposals we believe would make a significant difference to ROHHAD research.
“If we could fund them all at this stage we would. If we can raise the money required then understanding this disease better and improving treatments and finding a cure will happen as some of the most brilliant minds in the world want to make a difference.”
