The GSG Timeline

1988

The Support Group was started by Sue & Andy Bevington when their own galactosaemic son was 9 months old.

1991

Held the first "Get-together" in their local Church Hall. The first committee was formed.

1992

The second meeting was held, again in the local Church Hall, the committee did all the catering and speakers were invited to talk to the parents.

1993

The third meeting was held, now taking the form of a conference. Numbers had now grown too big for the Church Hall and self-catering so the venue was the Lea Marston Hotel, near Sutton Coldfield.
Sue Bevington was invited to speak on behalf of the European Support Groups at a large professionals galactosaemia conference in Fulda, Germany.
The GSG became a Registered Charity No. 1020167.

1994

Our fourth conference was held at Drayton Manor Park.
The Galactosaemia Register was started.
The Medical Advisory Panel was formed.

1995

Our fifth conference was held at Lea Marston Hotel.
A fun day was arranged at Woodgate Valley Park in South Birmingham. Clowns, games, stalls, a barbecue etc was organised. The day was quite well supported.
The GSG started to employ a dietitian to work for us part time, liaising with the food companies to compile our lactose free food booklets for us. It was agreed these would be updated every 6 months.

1996

Our sixth conference was held again at the Lea Marston Hotel.
Another fun day was organised in Sutton Coldfield with bouncy castle, clowns, donkey rides, stalls, games etc. Only 3 families attended, decided not to do it again.
Four members of the committee travelled to Germany to meet informally with representatives from other European Support Groups. It was decided that forming a European Group could be beneficial to us all.

1997

Our seventh conference was again held at Lea Marston Hotel.
Two Picnic Days were arranged to take over from the fun day, one in North Yorkshire and one in Essex. They were designed to be very simple to arrange days that would still get families, especially the children, together. Each family takes their own food and drink and the parents chat whilst the children play. The galactosaemics versus the non-galactosaemics rounders matches are now a legendary annual event!
The European Support Group representatives again met, this time in Austria and the European Galactosaemia Society (EGS) was officially formed.

1998

We held our first GSG weekend away in Mablethorpe. It was decided that as the conferences were now adult only (it got too difficult to organise with so many children involved and with such a large age range) we needed to organise an event that bought the children together. It was a great success.
The Picnic day was again held in Essex.
The EGS meeting was hosted by ourselves in London.
Our food list dietitian resigned because of family commitments and our current dietitian (Pat Portnoi) was appointed in her place.

1999

Our eighth conference was again held at the Lea Marston Hotel.
The second GSG weekend away was held in the Lake District.
The EGS meeting was held in Switzerland.
A research study was done with 25 galactosaemic children at BIBIC (British Institute of Brain Injured Children) to identify any common patterns of learning difficulties experienced by galactosaemic children and to create a useable document to assist parents, teachers and education authorities.

2000

Our third weekend away was held at Doniford Bay in Somerset.
The picnic day was again held in Essex.
The EGS meeting was held in Holland.

2001

Our ninth conference was held at Birmingham Children's Hospital, it included a workshop for galactosaemic children from 7-14.
Picnic day was held in Essex.
The EGS meeting was held in Belgium. Norway joined the group and told us they followed the UK diet.
Following numerous tests on cheese the decision was made to allow certain cheeses into the galactosaemic diet.

2002

The fourth GSG weekend away was held in the Lake District.
Picnic day held in Essex.
The EGS meeting was held in Holland.

2003

Our tenth conference was held over a full weekend at the George Hotel In Lichfield, Staffs.
The picnic day was held in Essex.
The EGS meeting was held in Spain, Switzerland admitted they were relaxing the restrictions they had on fruit and vegetables in the diet and starting to follow the UK recommendations.

2004

The weekend away was held near Lymington in the New Forest.
Picnic day was held in Essex.
EGS meeting was held in France.

2005

Our 11th conference was held, again over a full weekend, at the Renaissance Hotel in Solihull, West Midlands
The annual picnic day was help in Essex - in glorious sunshine for a change!
The EGS meeting was held in Sonen Breugal, Holland. No professionals were invited due to a large galactosaemia confrence held in Fulda, Germny in November.

2006

A weekend away was arranged in Derbyshire.
Annual picnic day in Essex.
EGS meeting was held in Dublin, Ireland.
Following talks at last years conference all galactosaemics over 5 were offered a free consulttion with the Zeidan Eye Center, to see if they could be helped by ChromaGen lenses.
Discussions have taken place between the GSG and a professor in neurology regarding a futher educational study.

2007

3D photographic study undertaken at GOS Hospital.
GSG 100 Club launched New.
GSG Christmas cards, designed by members, produced.

2008

Weekend away to Knockerdown Farm.
New garden office officially opened to house the GSG.
EGS meeting held in Paris, France
GSG group fundraising parachute jump organised.

2009

Family weekend away to North Wales which included a group fundraising abseil.
EGS meeting held in Paris, France.
GSG attended a family day in Perth, Scotland held by the IMD.
GSG had a stand at a dietitians event held at Birmingham University.
New accountant appointed.

2010

One day medical conference held at Birmingham Children’s Hospital.
Family weekend away held in the Cotswolds
GSG again attended a family day in Perth, Scotland
EGS meeting in Wil, Switzerland
GSG had a stand at Dietitians workshop in Birmingham
New GSG website launched.

2011

Family weekend away held in the Cotswolds.
EGS meeting in Zurich, Switzerland.
“Diet for Galactosaemia” booklets updated.
New “shopping card” produced.

2012

GSG Silver Jubilee Year and members were encouraged to hold fundraising events.
Conference held at the George Hotel in Lichfield.
UK hosted EGS meeting in Birmingham.
GSG had a stand for 3 days at the SSIEM meeting in Birmingham.
Calcium booklets produced.

2013

Family weekend away in the Cotswolds.
UK again hosted the EGS meeting in Birmingham.
Cheese testing continues to allow more choice in the diet.
Monthly giving to the GSG instigated to raise extra funds.

2014

Conference held at the Ramada Hotel in Sutton Coldfield.
EGS meeting held in Barcelona.
New legislation on food labelling introduced.

2015

Family weekend away in Morecambe including workshop with the Problem Solving Company.
New “Whats That” Booklet produced.
After much discussion the decision was made to leave the EGS.

2016

Family weekend away at Tattershall Lakes in Lincolnshire.
GSG attended BIMDG meeting in Bristol.