Page 22 - Real Rochdale Issue 22 Summer 2024

GEM Appeal marks 30

years of fundraising

The GEM Appeal is this year celebrating 30
years of fundraising and research into rare
genetic conditions. Founded in 1994 by
Karen Johnson, a mother-of-three who
tragically lost both her young sons to rare
genetic disorder Hunter syndrome, the
charity has been a driving force in advancing
support for families affected by this
condition.

To mark the charity’s 30th anniversary, the
Diamond and Pearl summer ball was held
at Rochdale Town Hall on 15 June, which
will be followed by the Strawberry Sparkle The GEM Appeal received the Queen’s Award
for Voluntary Service in 2019
ladies’ luncheon on 21 August, and charity
patron Denise Welch’s annual charity ball in She added: “The medical team at the hospital
November. is optimistic about the future and is striving

for more rare genetic diseases to be included
Karen’s sons, Simon and Mikey, were born in the newborn screening programme heel
with Hunter syndrome, a rare inherited prick test.
disorder where specific sugar molecules
cannot be properly broken down in the body. “There is still a long way to go to find cures

for these genetic disorders, but the GEM
The condition, also known as Appeal charity will do all it can to help get
mucopolysaccharidosis type II (MPS II), there. We want to continue to be with them
predominantly affects boys and leads to a every step of the way.”
range of health issues due to the
accumulation of these sugar molecules in For more information about the GEM
organs and tissues. Appeal, including how to donate, please
visit www.gem-appeal.co.uk
Hunter syndrome can vary in its severity
with symptoms including rapid and
progressive learning and memory problems,
and heart and lung dysfunction.

GEM Appeal trustee Wendy Mills said:
“Treatments have been life-changing for
many families with children with genetic
conditions; reducing symptoms, avoiding
further complications, extending life
expectancy and giving better quality of life.”

www.gem-appeal.co.uk

REAL ROCHDALE - SUMMER 2024 22 23 REAL ROCHDALE - SUMMER 2024