Ann Phillips, co-founder of AGSD-UK, passed away on Tuesday 20th October shortly after contracting COVID-19 in her care home. She was 86.
Although Ann retired from active involvement with AGSD-UK a few years ago, many members will remember her from Annual Conferences and other events.
Born five years before World War Two, Ann was raised in Nevada, USA, where she drove cattle with her father in the summer and attended school in Reno in the winter. She moved to California where she enjoyed the sciences and history and played the double bass. She obtained a Masters in Physics from Marquette University in Wisconsin. Her thesis was on the structure of an organic molecule. Ann found employment as a physicist for the US Navy in California and won a scholarship to Imperial College in London, where she met her husband-to-be and settled in the UK in 1965.
Ann’s fourth child Peter, born in 1972, was diagnosed with Von Gierke’s disease (GSD1a) and sadly died in 2008. It was Peter’s diagnosis and a chance meeting with Sue del Mar, the mother of another GSD1a child, that led to the formation of AGSD-UK.
Ann’s co-founder Sue del Mar commented:
“Ann was such an unusual person. So bright with many sensible ideas, very forthright and determined, not always easy to deal with but always with the best interests of AGSD-UK at heart. Looking back to that day when we first met it seems incredible that between us we pioneered the charity from just the two of us, for it to now be in its present position. It was quite a battle at times but together we kept going and she was so brave not to give up after Peter died. We all owe a lot to her courage and tenacity.”
AGSD-UK Trustee Ailsa Arthur commented:
“Ann’s drive and wisdom were instrumental in ensuring that everyone’s voice was heard.”
Ann is to be buried along with Peter’s ashes on Thursday 29th October in Mottram, near Glossop.
We are sad to hear of Ann’s death. She was a driving force behind the AGSD. She welcomed us at the first Type V clinic in Oswestry. A lovely lady.
We are saddened to hear the sad news of Ann’s death and we’d like to convey our heartfelt condolences to all her family on their bereavement.
We first had the privilege of being introduced to Ann when our son, a young baby at the time, was being treated by the same consultant as her son Peter.
We were struck by Ann’s sincerity, faith and determination and will always be grateful for the friendship which developed, as well as for the help she extended to us during difficult times.
Ann did so much together with Sue Del Mar to set up the group to help families affected by GSD providing support and gaining access to expert medical advice.
During Ann’s visits to London we’d meet up whenever we could and catch up, sometimes going to an exhibition which she loved to do.
Her friendship, support and advice were so helpful to us over the years and will always be gratefully remembered.
I first met Ann around 1999, long after AGSD-UK had been formed yet she still had an unrelentling drive to improve the lives of people with GSDs. It was incredible how she kept going, even through Peter’s failed liver transplants and beyond his eventual passing. Throughout she championed not just the interests of those affected by 1a, but with all the GSDs. She will be long remembered.
Thank you everyone your kind words . Yesterday was the best celebration possible of my mum’s life and despite of the driving rain and it being in a tier 3 COVID area we did her justice. The family are so proud of what she has achieved in her long life and my she now rest in peace with my brother. Thank you everyone Patrick
So sad to hear of the passing of Ann. It has been a while since I last saw Ann but I do remember being made to feel very welcome by Ann and Sue at the first conference I attended in 1999, Manchester I think. I had been diagnosed over 10 years earlier in 1988 and it was the first time I was able to meet others with Pompe. I remember being made to feel very welcome and to feel part of a growing AGSD family. I remember Ann being informative and supportive and feel very fortunate to have met her. My thoughts and prayers are with her family and friends at this most difficult time.
I only managed to get to a couple of conferences, but Ann was so friendly & welcoming.
Such a caring person. She will be sorely missed.
Out thoughts are with her family, Andy & Nadine De Vine.
Ann was the very first person I spoke to regarding GSD just after our daughter Lauren was diagnosed.
Ann invited us as a family to our very first conference which at that time was held in Birmingham. Ann had lots of knowledge and was a very supportive person.
I remember first meeting Anne at The Neuromuscular Centre in Cheshire in September 2002, just months after being diagnosed with Pompe Disease. She was a very determined lady always trying to ensure that despite a GSD diagnosis we all had the appropriate support in every way possible to live a good quality of life. Your legacy will live on Anne. Thank you. Thinking of all your family at this time. Andrea Duckworth
I first met Ann at the Oswestry clinic in 2000, she was such a lovely lady and always so welcoming. She will be sadly missed. My condolences to her family at this sad time. Rest In Peace Ann, God bless.
Memories come flooding back of Ann’s ambitions for AGSD-UK at trustee meetings, conferences and at the end of the phone line; forever passionate about protecting the interests of all members of the growing GSD community, both at home and around the globe.
Our condolences to the family, who should be very proud of Ann’s achievements and dedication to the organisation she co-founded.
Allan, Barbara and Jamie
A very determined and driven lady who along with Sue created an organisation which gave families and GSD sufferers information and hope for a life ahead. She will be sadly missed , but never forgotten. Our thoughts are with her family at this very sad time. Henry, Janet and Rosie.
I first met Ann in September 2002, months after being diagnosed with Pompe disease. She fought tirelessly to encourage people with a GSD diagnosis to live a good quality of life. Thank you Ann. Thinking of your family at this time.