Haverhill fund-raiser Rose Felloni, 79, targets hitting £100,000 total for charity before her 80th birthday

steve.barton@iliffepublishing.co.uk

Published: 05:00, 02 November 2025

A mum who began fund-raising for charities after her daughter died of a rare condition faces a race against time to achieve her goal of hitting the £100,000 mark before she turns 80.

Rose Felloni, of Haverhill, started raising money after her daughter Deena, 38, died in May, 2005.

Deena had Prader-Willi Syndrome, a rare complex genetic disorder that causes low muscle tone with consequent motor developmental delays, and one in which the mechanism that tells you you have eaten enough does not work.

Rose Felloni giving a talk at a coffee club - she has so far raised £91,000 for charity and wants to reach £100,000 and then retire from fund-raising

When Deena died she weighed 35 stone and was only 4ft 10inches tall.

To date, Rose has raised £91,000 for charity, the majority for the PWSA (Prader-Willi Syndrome Association) and the Foundation for Prader-Willi Research but also for other charities, including the RNLI, Help for Heroes and Caring for Cambridge Homeless.

Now she wants to breach the six-figure mark before her 80th birthday on August 14, 2026.

Rose Felloni’s daughter Deena Renyard, died aged 38. She had Prader-Willi Syndrome. Picture: Contributed

Rose said: “Since her passing, I have coped with my grief by devoting my life to raising awareness and funds for research into this awful condition.

“Sadly, a lot of families who have a member with PWS are suffering in the same way that Deena and I did all those years ago, nothing seems to have changed very much.

“A lack of support and access to the right agencies meant that basically, we were left to just get on with it.

“By highlighting our experiences and raising as much awareness as I can, I'm hoping we can make life a little better for other sufferers and their families who are on this journey too.”

The fund-raising push began on Saturday, October 25 with a Hallowe’en Party at The Bull in Haverhill. Others planned include sponsored walks, cream teas, an RAF sea rescue and a walk up Pen y Fan in the Brecon Beacons with a fridge full of beer carried on her brother Phil’s back.

• Rose has also just received the annual John Booth Award for Volunteering from the PWSA UK in recognition of her contribution to the charity.

Charity Haverhill Human Interest Suffolk Homepage Steve Barton