50 years of being there - 1971- 1981
To celebrate 50 years of the Huntington’s Disease Association, we are sharing our story through the decades. Over the next six months, we’ll cover a decade each month highlighting the charity’s achievements and growth, alongside developments in Huntington’s disease research and care. This month we start with the years covering 1971 - 1981, and we’ll take you on a journey through the charity's initial conception and early advances in Huntington’s disease research.
1971 - In the beginning…
The Huntington’s Disease Association was first formed in 1971 and was initially known as the 'United Kingdom Committee to Combat Huntington's Disease’. The tale of how we came about is one born out of the desire to understand, support and help.
In 1967, Marjorie Guthrie, wife of famous American musician Woody Guthrie, who sadly passed away from Huntington’s disease, set up the ‘Committee to Combat Huntington’s Disease’ in the USA. Fast forward to the summer of 1970, our founder Mauveen Hart was skimming through a British newspaper when she came across a piece discussing Woody Guthrie’s Huntington’s disease. This prompted Mauveen to reach out to Arlo Guthrie, the son of Woody and Marjorie, asking for any information he may have on the disease. Later, Marjorie Guthrie herself replied, supplying leaflets with information about Huntington’s and the ‘Committee to Combat Huntington’s Disease’. Mauveen was extremely grateful for this information as her father had Huntington’s disease and she was at risk. Although the ‘Committee to Combat Huntington’s Disease’ was 3000 miles away, she found solace and was relieved to hear that an organisation had been formed to help people like her father.
This struck a spark in Mauveen, urging her to start a similar organisation here in the UK but she knew little of how to do this and by the winter of 1970 was still pondering the problem.
Mauveen came across widespread ignorance and a stigma around Huntington’s even within the medical community. It is said that one consultant who spoke to Mauveen said “The Pilgrim Fathers took it to America and we know no more about it now as we did then”. This lack of understanding and support urged Mauveen on.
On Sunday 13 December 1970, an article appeared in a newspaper called ‘The People’ featuring Mrs Ellen Sibley and her family who were affected by Huntington’s disease. This was the first time the disease had been featured in the British press and it surprised both Mauveen and other Huntington’s families in the UK to see the disease being covered in a national newspaper. Seizing the opportunity in both hands, Mauveen contacted the newspaper and a week later on 20 December 1970, a follow-up letter from Mauveen was published in ‘The People’ calling for other Huntington’s families to contact her
In just one month,76 Huntington’s families had written to Mauveen. The next step was to send out a questionnaire to grasp what exactly the families wanted from the group and choose a name. Mauveen suggested that the group was called the ‘United Kingdom Committee to Combat Huntington’s Disease’ or ‘UKCCHD’ for short! Armed with 76 members, UKCCHD set off to conquer Huntington’s disease and the world.
In May 1971, a central committee was formed from those 76 families and their first meeting took place at Mauveen’s home in Ashford. This was probably the first-ever meeting of Huntington’s disease families in the UK. The first newsletter was sent out the very same month to over 80 members.
Sheffield was the first branch to form in 1971. During that year, UKCCHD drew in more Huntington’s families along with an army of doctors, social workers, nurses and more.
In an upcoming interview with Mauveen Hart, which will appear in our Autumn 2021 member magazine, she says when discussing starting a charity “Someone told me early on to never be put off by asking for help, all it cost was a letter and a stamp. I’ll always remember in the early days, the joy of receiving our first donation of £5 from a pharmaceutical company.”
If you would like to become a member and be the first to receive our bi-yearly magazines, please register here.
1972 - the first medical professionals come on board
After the initial success of the ‘United Kingdom Committee to Combat Huntington’s Disease’, news reached the group of a doctor from Gloucester Royal Hospital who was especially interested in Huntington’s. Mauveen wrote to Dr David Stevens to tell him about the group and he in return offered his full support. Later, Dr Stevens was to write family and medical booklets for the charity with the first one being released in 1972.
1979 - Nancy Wexler begins her battle against Huntington’s disease
Nancy Wexler is an American geneticist who comes from a Huntington’s family - her mother had the disease and her father was a clinical psychologist. This background urged her to study genetics and in 1979, her studies took her to Venezuela, where generations of people had been affected by Huntington’s disease with no care, support and a lot of stigma surrounding their illness. For two decades, Nancy led medical teams into remote villages in Venezuela to take blood samples for research and offer support to the communities. Over time, Nancy encouraged scientists to collaborate and find the cause of Huntington’s disease. She raised millions of dollars for research and in 1993 Nancy, alongside a team of elite scientists, revealed that they had finally discovered the Huntingtin gene which leads to the development of Huntington’s disease.
1981 - Growth
In ten years, the ‘United Kingdom Committee to Combat Huntington’s Disease’ had grown. Huntington’s families from all over the country were joining the group and as the year drew to a close, the UKCCHD had over 2000 family members.
We want to say a huge thank you to Mauveen and all the other people who made the ‘United Kingdom Committee to Combat Huntington’s Disease’ possible. Without you, we would not be the charity we are today, and would not be supporting the thousands of people across England and Wales and further afield, with their Huntington’s journey.
Join us in September for the next decade in our story, 1981 - 1991.
If you have a story that you would like to share to celebrate the Huntington’s Disease Association turning 50, you can share it on social media and tag #50YearsOfBeingThere or #HDA50Years.
If you are affected by Huntington’s disease and need support or advice, please contact us on 0151 331 5444 or email [email protected].
To celebrate 50 years of the Huntington’s Disease Association, we are sharing our story through the decades. Over the next six months, we’ll cover a decade each month highlighting the charity’s achievements and growth, alongside developments in Huntington’s disease research and care. This month we start with the years covering 1971 - 1981, and we’ll take you on a journey through the charity's initial conception and early advances in Huntington’s disease research.
1971 - In the beginning…
The Huntington’s Disease Association was first formed in 1971 and was initially known as the 'United Kingdom Committee to Combat Huntington's Disease’. The tale of how we came about is one born out of the desire to understand, support and help.
In 1967, Marjorie Guthrie, wife of famous American musician Woody Guthrie, who sadly passed away from Huntington’s disease, set up the ‘Committee to Combat Huntington’s Disease’ in the USA. Fast forward to the summer of 1970, our founder Mauveen Hart was skimming through a British newspaper when she came across a piece discussing Woody Guthrie’s Huntington’s disease. This prompted Mauveen to reach out to Arlo Guthrie, the son of Woody and Marjorie, asking for any information he may have on the disease. Later, Marjorie Guthrie herself replied, supplying leaflets with information about Huntington’s and the ‘Committee to Combat Huntington’s Disease’. Mauveen was extremely grateful for this information as her father had Huntington’s disease and she was at risk. Although the ‘Committee to Combat Huntington’s Disease’ was 3000 miles away, she found solace and was relieved to hear that an organisation had been formed to help people like her father.
This struck a spark in Mauveen, urging her to start a similar organisation here in the UK but she knew little of how to do this and by the winter of 1970 was still pondering the problem.
Mauveen came across widespread ignorance and a stigma around Huntington’s even within the medical community. It is said that one consultant who spoke to Mauveen said “The Pilgrim Fathers took it to America and we know no more about it now as we did then”. This lack of understanding and support urged Mauveen on.
On Sunday 13 December 1970, an article appeared in a newspaper called ‘The People’ featuring Mrs Ellen Sibley and her family who were affected by Huntington’s disease. This was the first time the disease had been featured in the British press and it surprised both Mauveen and other Huntington’s families in the UK to see the disease being covered in a national newspaper. Seizing the opportunity in both hands, Mauveen contacted the newspaper and a week later on 20 December 1970, a follow-up letter from Mauveen was published in ‘The People’ calling for other Huntington’s families to contact her
In just one month,76 Huntington’s families had written to Mauveen. The next step was to send out a questionnaire to grasp what exactly the families wanted from the group and choose a name. Mauveen suggested that the group was called the ‘United Kingdom Committee to Combat Huntington’s Disease’ or ‘UKCCHD’ for short! Armed with 76 members, UKCCHD set off to conquer Huntington’s disease and the world.
In May 1971, a central committee was formed from those 76 families and their first meeting took place at Mauveen’s home in Ashford. This was probably the first-ever meeting of Huntington’s disease families in the UK. The first newsletter was sent out the very same month to over 80 members.
Sheffield was the first branch to form in 1971. During that year, UKCCHD drew in more Huntington’s families along with an army of doctors, social workers, nurses and more.
In an upcoming interview with Mauveen Hart, which will appear in our Autumn 2021 member magazine, she says when discussing starting a charity “Someone told me early on to never be put off by asking for help, all it cost was a letter and a stamp. I’ll always remember in the early days, the joy of receiving our first donation of £5 from a pharmaceutical company.”
If you would like to become a member and be the first to receive our bi-yearly magazines, please register here.
1972 - the first medical professionals come on board
After the initial success of the ‘United Kingdom Committee to Combat Huntington’s Disease’, news reached the group of a doctor from Gloucester Royal Hospital who was especially interested in Huntington’s. Mauveen wrote to Dr David Stevens to tell him about the group and he in return offered his full support. Later, Dr Stevens was to write family and medical booklets for the charity with the first one being released in 1972.
1979 - Nancy Wexler begins her battle against Huntington’s disease
Nancy Wexler is an American geneticist who comes from a Huntington’s family - her mother had the disease and her father was a clinical psychologist. This background urged her to study genetics and in 1979, her studies took her to Venezuela, where generations of people had been affected by Huntington’s disease with no care, support and a lot of stigma surrounding their illness. For two decades, Nancy led medical teams into remote villages in Venezuela to take blood samples for research and offer support to the communities. Over time, Nancy encouraged scientists to collaborate and find the cause of Huntington’s disease. She raised millions of dollars for research and in 1993 Nancy, alongside a team of elite scientists, revealed that they had finally discovered the Huntingtin gene which leads to the development of Huntington’s disease.
1981 - Growth
In ten years, the ‘United Kingdom Committee to Combat Huntington’s Disease’ had grown. Huntington’s families from all over the country were joining the group and as the year drew to a close, the UKCCHD had over 2000 family members.
We want to say a huge thank you to Mauveen and all the other people who made the ‘United Kingdom Committee to Combat Huntington’s Disease’ possible. Without you, we would not be the charity we are today, and would not be supporting the thousands of people across England and Wales and further afield, with their Huntington’s journey.
Join us in September for the next decade in our story, 1981 - 1991.
If you have a story that you would like to share to celebrate the Huntington’s Disease Association turning 50, you can share it on social media and tag #50YearsOfBeingThere or #HDA50Years.
If you are affected by Huntington’s disease and need support or advice, please contact us on 0151 331 5444 or email [email protected].