Raising Money For Emilys Entourage

I have been given another amazing opportunity to raise money for Emily’s Entourage - to support their quest to find a cure for rare mutations that cause Cystic Fibrosis. 

The charity is working extremely aggressively to find a cure for people with CF and other genetic disease that are caused by Nonsense Mutations. The founder of the charity Emily and I, both share the same rare mutations of Cystic Fibrosis. We have Nonsense Mutations, which affect only 7,000 people with CF worldwide (10% of the CF population) and are most common among Ashkenazi Jews. Our average life expectancy is 37 years old.

Emily’s Entourage was started 7 years ago after Emily’s health deteriorated rapidly. With very little research on these mutations, because they affect so few, Emily and her family weren’t going to give up. They were determined to fight and decided to take matters into their own hands by starting a charity with the aim of raising money to accelerate research for our specific mutations.

Since 2011, the organization has raised millions of dollars to fund critical research and apply an entrepreneurial approach to accelerating the development of life-saving therapeutics. They have brought together the leading minds in the industry to form a stellar scientific board, with the goal of bringing meaningful breakthroughs to the CF Nonsense Mutation community within 5 years.

They are running their annual campaign, and I am honoured to be able to help raise money and awareness for the charity. Time is running out and I believe it’s my best hope for finding a cure.

If you prefer not to donate or can’t afford to, I would love if you could share this post so that we can create awareness for the disease and the charity.

Further details about the charity can be found at https://www.emilysentourage.org/.

The charity is US based and therefore donations are not tax deductible for Australians.