MANUELA SUPPORTS LOCAL MUM IN HER CAMPAIGN FOR MEDICINES THAT WILL HELP PROLONG HER LIFE

Charlotte and her sister are supporting a nationwide petition to fund NHS access to Omaveloxodone. They met with Manuela to seek her support for the petition which asks the Government to fund this new drug, which delays the onset of symptoms in people who carry the condition. 

Manuela met with Charlotte and her sister Olivia recently. Afterwards she said:

“It was such a pleasure to meet these two young mums who came to see me about this petition which has already got enough signatures to be considered for a debate.

“Friedreich’s ataxia is a rare, inherited genetic condition that causes progressive damage to the nervous system, affecting balance, coordination, speech and mobility. The condition is caused by a defect in the FXN gene, which leads to reduced production of frataxin, a protein essential for healthy cell function. Symptoms typically begin in childhood or adolescence and can worsen over time, often impacting independence and quality of life. FA can also affect the heart and other body systems, making it a complex, life-limiting condition with significant unmet medical needs.

“People with FA have an average life expectancy of 35-40 years and symptoms degenerate over time. For that reason, it’s vital that medicines that delay the onset are used as soon as possible.”

“Charlotte and Olivia are so brave. They want to tell their story to raise awareness. This condition is debilitating and life limiting, and all they want is to spend as much time as they can with their families. This new drug would help them to do that. 

“If we are successful in getting a debate, I will be there in the chamber to fight for my constituent and the many others that she represents.” 

“If you want to support their cause, you can sign the Government petition here”

ENDS

Full back story covered by Stratford Herald: Mums with a life-limiting disorder make desperate plea for drug that can extend their lives