Supporting CdLS Hope for Hasti
You may remember that a few months ago the Talk of the Towns team interviewed Major Chris Brannigan, a soldier based at the Tidworth Garrison, about his daughter Hasti.
Chris sopke about how 8-year-old Hasti lives with the life limiting genetic condition, CdLS and how the family had set up the CdLS Hope for Hasti charity to help raise funds towards creating a treatment. Unfortunately however, many of the planned fund-raising drives had to be placed on hold or cancelled due to the current coronavirus outbreak.
But, help is at hand.
Community mask trees are popping up all over the country, with local volunteer-sewers providing masks in return for donations. The first community mask tree was set up by Naomi Betts in Amesbury, and she has been giving her donations to CdLS Hope for Hasti as her chosen charity.
The Mask Tree project is an amazing initiative, while supplying the local communities with essential masks in return for a voluntary donation, it is also helping charities at this very challenging time. There are now 168 community mask trees across the country, with the forest growing daily, providing hand-made masks for local communities. Naomi has sewed over 1000 masks and has donated over £1,500 to Hope for Hasti, a charity developing a ground-breaking therapy for children with the rare genetic condition, Cornelia de Lange Syndrome (CdLS).
"I felt saddened to learn that many of the planned Hope for Hasti fundraising events had to be put on hold because of the pandemic. The Community Mask Trees initiative supports many great charities, but while demand for cloth masks continues, I will continue to donate excess funds from my Community Mask Tree to Hope for Hasti" said Naomi Betts
CdLS is a life-shortening and life-limiting condition resulting from a random gene mutation that can leave those affected profoundly disabled but currently has no treatment options and receives no official funding for research. CdLS Hope for Hasti aims to raise £400,000 to create the first ever treatment for this debilitating condition
Major Chris Brannigan, founder of the charity, Hope for Hasti, said, "It has been a massive struggle to fundraise and as a small newly registered charity we have no access to any of the grants available. My little eight-year-old girl, Hasti, has CdLS. We need to create the treatment before she reaches puberty and we are working night and day to make a treatment for this rare and debilitating disease a reality before it is too late for Hasti. The fact that strangers all over the country like Naomi are so willing to help us in any way they can, has given us strength and hope to continue to fight to get our daughter the treatment she deserves".
Funding for rare disease research in the UK is extremely limited. 95% of all orphan diseases have no treatment options, leaving families to raise funds themselves to create these vital therapies for some of the most vulnerable children in our society.
Each mask tree host chooses which charity they would like to support. If you would like to find out more about the Community Mask Trees you can visit their Facebook page here.