Nora Guthrie joins fight to safeguard Huntington’s specialist services

Woody Guthrie’s daughter arrives in Glasgow to fight cuts to specialist services for families with Huntington’s disease

• The double Grammy-award winning daughter of legendary folk musician Woody Guthrie, who died of Huntington’s disease in 1967, is supporting the fight for specialist Huntington’s disease services
• Today (Friday 24 October) she will meet Scottish families, politicians, and key stakeholders to build support and awareness about the incurable brain condition at an event in Glasgow
• Yesterday (Thursday 23 October) she visited the iconic Clutha Bar for the first time to see where the Woody Guthrie performed while on shore leave during WW2
• “We knew nothing about Huntington’s disease when my father became ill; there was no information or help. It changed us forever and decades on from Woody’s death we’re still fighting for Huntington’s families, including our own. Today we bring the fight to Scotland where proposed cuts risk undermining decades of progress which has resulted in the country arguably having the best services in the world.” – Nora Guthrie, musician and President Emeritus of Woody Guthrie Publications
• The visit comes as Glasgow City Health and Social Care Partnership proposes to become the first area in history to defund the charity’s Huntington’s Disease Specialist Service.

The daughter of legendary American folk musician Woody Guthrie retraced her father’s footsteps on the banks of the River Clyde during WW2 as part of her mission to continue his legacy of activism by speaking out in support of Huntington’s disease families.

A Grammy Award-winning artist in her own right, Nora Guthrie has worked with numerous US and global artists as diverse as Bruce Springsteen, Lou Reed, Madeleine Peyroux, Billy Bragg, John Mellencamp, Ani DiFranco, and The Dropkick Murphys.

Yesterday she was welcomed to Glasgow by Scottish Huntington’s Association during her visit to The Clutha Bar on the Clydeside, where her father played an unplanned set while on shore leave from a US Merchant Navy shop during the Second World War. She also met bar owner Alan Crossan, musicians including James Allan from Glasvegas,  and members of the public who popped in to have a chat about Woody Guthrie, his music, and Huntington’s disease.

Today (Friday) at a private event in the Social Hub, Glasgow, Nora will meet politicians, key stakeholders and Huntington’s families at a private event in Glasgow city centre on Friday 24 October. She will tell the story of her family’s life with Huntington’s disease through music, footage, artwork, rarely aired Guthrie home movies and personal family photographs.

Nora said:

“I am keen to do what I can to help Scottish Huntington’s Association, which has developed a national network of specialist Huntington’s services not found anywhere else on earth.

“At a time when other nations are looking to Scotland to learn about Huntington’s care and support, it’s hugely concerning to hear of Scottish funders considering cuts to specialist services that help to reduce suicides, lower crisis hospital admissions, and make it possible for people to live at home with the people who love them for longer. I urge everyone involved in planning such cuts to think very carefully about the long term consequences for families, communities, and health and social care providers. Funders should be taking specialist care and support forwards, not backwards.”

As former President of Woody Guthrie Publications in New York, Nora has dedicated over 30 years to the curation of her late father’s work and enduring cultural influence.

With this labour of love comes a deep determination to help other families living with Huntington’s disease, which led to Woody’s death after years of misdiagnosis and a lack of knowledge about the nature of the hereditary brain condition.

Nora, who is based in New York, has joined forces with Scottish Huntington’s Association to celebrate the achievements of the charity and help it fight cuts that threaten decades of progress for people Scotland who are living with Huntington’s disease.

Her visit also comes soon after scientists announced the discovery of a breakthrough treatment to slow the progress of the disease – which will increase demand for the specialist care and support that only Scottish Huntington’s Association provides.

Like many third sector organisations, the charity faces a ‘perfect storm’ of escalating running costs, National Insurance rises, cost of living increases, and now proposed statutory funding cuts. It comes at a time when demand on the charity’s specialist services is higher than ever, with research by the University of Aberdeen revealing that parts of Scotland have prevalence rates of Huntington’s disease amongst the highest in the world.

The expert and personalised support provided by the charity’s Huntington’s Disease Specialists, Specialist Youth Advisors and Financial Wellbeing Officers reduces suicide and unnecessary hospital admissions; supports carers and other family members; lowers household poverty; and alleviates wellbeing risks to children and young people living in Huntington’s families.

The hereditary condition destroys brain cells that regulate body movement, the mind, and mental health. For the last 13 years of his life, Woody was confined to institutions, surrounded by doctors with little or no knowledge about Huntington’s disease and its symptoms.

By the time of his death, Woody could not walk, talk, eat or drink. Writing, playing the guitar and singing had long since become a thing of the past, yet fellow musicians, including a starstruck Bob Dylan and Pete Seeger continued to visit Woody in hospital, as depicted in the 2024 hit movie A Complete Unknown.

When Nora was born, Woody was already experiencing the complex and severe symptoms of Huntington’s disease.

Nora said:

“My relationship with my dad was wholly about Huntington’s disease.

“He couldn’t really talk and there was no physical contact because his body was always moving. I would hold his arms back to hug him. There could also be episodes of violence which meant we couldn’t be around, but my mom was always there to take care of Dad and looked after his wellbeing for the rest of his life.”

Woody’s illness, and the impact on his family and everyone who loved him, sparked the beginnings of a global movement led by his late wife – and Nora’s mum – Marjorie Guthrie.

Following Woody’s death, Marjorie founded the Committee to Combat Huntington’s Disease in 1968, later renamed the Huntington’s Disease Society of America. For the rest of her life, she fought for a cure and better care for families.

This mission inspired the formation of Huntington’s disease organisations across the world, including Scottish Huntington’s Association which is recognised at global levels for its care and support of Huntington’s families.

Nora added:

“We have had a wonderful welcome to Glasgow and it’s extra special to experience the city that had such a profound impact on my dad. About 30 years ago we uncovered his poems and writings about the Red Clydeside, rain that you can’t escape, how people sound like they are singing when they are talking, and his sadness at having to leave.

“I was always aware of our Scottish links when I was growing up. Woody’s mother, also called Nora, sang Scottish ballads before she became unwell with what we now know was Huntington’s disease. That Scottish influence can be heard in his famous ballads.”

CEO of Scottish Huntington’s Association, Alistair Haw, said:

“Woody Guthrie is not just an international icon of music, he and his family are also international icons in the global battle against Huntington’s disease, having fought to raise awareness and care standards for decades.

“It’s an enormous honour that Nora Guthrie has chosen to support our case in Scotland, where cuts threaten to seriously undermine decades of advances in the care and support of Huntington’s families. Investing in proactive community-based specialist Huntington’s disease services is a cost saving measure, reducing crisis situations and keeping those impacted safer in the community for longer.

“It is difficult to think of a more obvious example of a false economy than cutting back these services, and it’s great to have a global expert coming to Scotland to state this very case.”