Family in funds bid for US trip
Genetic disorder conference
A Bannockburn boy with a rare genetic disorder is bidding to travel to America to attend a conference especially for families affected by the condition.
Twelve-year-old Calum McPherson has been diagnosed with CHAMP1 gene mutation, which causes severe speech difficulties.
Wallace High pupil Calum has been non– verbal since birth and requires one-to-one support in every aspect of his life.
Now Calum and his family are trying to raise £3,500 for a trip to America to attend the first ever gathering of some of the families dealing with the condition worldwide.
The conference is to take place in Florida in June this year.
Mum Stacey recently joined the board of the newly-established CHAMP1 Research Foundation which was set up by one of the American CHAMP families.
Stacy, the board’s community support chairperson, said: “I’m hoping to be able to take Calum to meet the other families and for us to be able to spend time with them. We also have medical professionals attending to collaborate with the CHAMP1 community.
“The CHAMP1 Research Foundation has formed a scientific advisory board. There are potential researchers available if our foundation has funding to cover their research costs.
“This research would help to fully understand the function of the CHAMP1 gene in order to develop effective treatment and a potential cure for CHAMP1 disorders.”
There have only been 51 diagnosed cases of the rare condition worldwide, including four across the UK, and Calum is the only one in Scotland.
Calum was diagnosed with the condition in 2016 and since then Stacey has been on a fundraising mission to help support research into better understanding the condition.
She created a Facebook group, in which 45 of 51 affected families worldwide are now connected and have a platform to share their experiences through the group.
So far more than £1200 of the family’s £3500 target has been raised.
To donate go to https://www.justgiving. com/crowdfunding/champ1research?utm_ id=107&utm_term=MgPzgnx7x