HDA Banner for Prime Minister
The Huntington’s Disease Association (HDA) presented a signed 15ft banner, bearing more than 750 names, to one of the Prime Minister’s aides in Downing Street on Thursday 24th March. The aim is to ensure HD, a rare condition, is hidden no more.
It was delivered by journalist Charles Sabine, who has the gene that will cause him to develop the illness, Cath Stanley (HDA Chief Executive) Ruth Sands, Regional Care Adviser, and three family members, Nicola and Barbara affected by Huntington’s disease and Kester a carer. The banner contained more than 750 signatures from the HD community, gathered during a lobby on Westminster in June last year, at the launch of the All Party Parliamentary Group on Huntington’s disease. Those who joined the lobby included HDA Patron and staunch supporter Tony Hadley, of Spandau Ballet. Cath Stanley said “We are always trying to raise awareness of this rare debilitating illness and the specialist support needed, and by establishing the APPG it has given the opportunity for a debate to consider the challenges facing the 6,700 people diagnosed with a currently incurable disease”. On the day of the launch several MP’s met with families from their constituencies who raised many issues including adequacy of research, caring and management of the condition. The matter was raised in parliament for the first time in over 20 years.
For more information about the Huntington’s Disease Association, Huntingtons’ disease or the All Party Parliamentary Group, please contact Cath Stanley, Chief Executive, Huntington’s Disease Association. Telephone 0151 331 5444 or email [email protected]
The Huntington’s Disease Association (HDA) presented a signed 15ft banner, bearing more than 750 names, to one of the Prime Minister’s aides in Downing Street on Thursday 24th March. The aim is to ensure HD, a rare condition, is hidden no more.
It was delivered by journalist Charles Sabine, who has the gene that will cause him to develop the illness, Cath Stanley (HDA Chief Executive) Ruth Sands, Regional Care Adviser, and three family members, Nicola and Barbara affected by Huntington’s disease and Kester a carer. The banner contained more than 750 signatures from the HD community, gathered during a lobby on Westminster in June last year, at the launch of the All Party Parliamentary Group on Huntington’s disease. Those who joined the lobby included HDA Patron and staunch supporter Tony Hadley, of Spandau Ballet. Cath Stanley said “We are always trying to raise awareness of this rare debilitating illness and the specialist support needed, and by establishing the APPG it has given the opportunity for a debate to consider the challenges facing the 6,700 people diagnosed with a currently incurable disease”. On the day of the launch several MP’s met with families from their constituencies who raised many issues including adequacy of research, caring and management of the condition. The matter was raised in parliament for the first time in over 20 years.
For more information about the Huntington’s Disease Association, Huntingtons’ disease or the All Party Parliamentary Group, please contact Cath Stanley, Chief Executive, Huntington’s Disease Association. Telephone 0151 331 5444 or email [email protected]