Scottish Huntington's Association

Fantastic news! We have been awarded £100,000 over three years from BBC Children in Need to reach young people aged 18 and under in Highland. This vital funding will help our Specialist Youth Advisors to deliver: ▶️ One-to-one meetings ▶️ Group and peer support sessions ▶️ Residential breaks and Summer Camps ▶️ Resources, such as digital and print Scottish Huntington’s Association is the only charity in the country dedicated exclusively to the Huntington’s community, including young people growing up in families impacted by the disease. This grant will help to make a real difference in their lives, while it also recognises the impact of our work with individuals and families across Scotland.

We are thrilled to be the chosen charity for this year’s Women of Scotland Lunch. 📅 Friday 25 April 2025, from 11:30 AM 📍 Radisson Blu Hotel, Glasgow Enjoy a two-course lunch, a welcome drink, and wine at the table, plus an exciting prize draw - all while supporting families affected by Huntington’s disease across Scotland. 🎤 Guest speakers: Olympic legends Dame Katherine Grainger Grainger and our Patron Sarah Winckless MBE. This year marks the 20th anniversary of their first World Championship win together. Get your tickets, enter the prize draw, or donate now! ➡️ https://ow.ly/oURk50VlAby #WomenOfScotland #HuntingtonsDisease #CharityEvent #ScottishHuntingtonsAssociation

One week until deadline! ⏰ The fund, now in its second year, is for academic and practitioner researchers across all disciplines and at any career stage who are studying or working in an associated education, healthcare or third sector setting in Scotland. Made possible through a generous legacy donation, we award grants of up to £2000 per successful applicant to help promote and disseminate research findings. Find out more at https://ow.ly/GF9g50V7yhQ #Research #ImpactGrant #Funding

A huge thank you to Connie Daly, who turned her love of baking into an amazing event in aid of Scottish Huntington’s Association. A keen amateur baker, Connie raised more than £1300 by teaming up with Pillow Partners, encouraged by her husband Holden who works there. The one-day bake sale at the property company’s Glasgow HQ was a huge success and Connie is delighted that she was able to turn her talents to supporting other Huntington’s families. “I wanted to raise awareness and funds for the charity because Huntington’s disease has been in my life for as long as I can remember,” she said. “We can trace it back to my great grandmother. I never knew my gran but I remember Uncle Gary developing symptoms, including the jerky movements that he couldn’t control. “As a child I didn’t understand what was happening to Uncle Gary but I was used to being around people with symptoms so it never scared me. Looking back, I realise now that I was shielded from the worst by my mum and dad. But I was still heartbroken when I lost my favourite cousin Laura; she was so full of fun and had a great spirit. I still miss her now. “Dad has tested negative for the faulty Huntington’s gene, which means we don’t need to worry about either of us developing the disease. But we still live with the loss of too many loved ones. In that respect, Huntington’s will always be with us.” Bake sale customers included Scottish Huntington’s Association Chief Executive Alistair Haw and Head of Income Generation Andrea McIntyre. “We are truly grateful to Connie and Pillow Partners for their support in this way. Our charity is reliant on the generosity of individuals, groups, and businesses to help make a positive impact in the lives of those impacted by Huntington’s disease. Connie’s contributions highlight the strength of community and the difference one person can make when they blend their talents with a desire to help others,” said Andrea.

What a fantastic day! The sun was shining on #TeamSHA as fearless fundraisers hit new heights for Huntington’s families at the Falkirk Wheel Abseil. Together they have raised an outstanding £6,911 so far, which will help provide families in Scotland with life-changing support from Scottish Huntington’s Association. Please comment below to join us in expressing our heartfelt gratitude to our absolutely amazing abseilers👏🏼 #Grateful #Fearless #HuntingtonsDiseaseAwareness

There are only 2 weeks left to apply to our Impact and Engagement Fund 📢 Dr Neil Ramsay, who was granted an award last year, used the funding to investigate the co-existence of Functional Neurological Disorder (FND) in Huntington's disease and presented his findings at the European Huntington’s Disease Network (EHDN) conference in Strasbourg last year. "Without Scottish Huntington’s Association’s support, I wouldn’t have been able to attend the event and network with like-minded clinicians and researchers and learn from patients and carers" said Neil. Made possible through a generous legacy donation, we award grants of up to £2000 per successful applicant to help promote and disseminate research findings. Deadline: 31 March 🗓️ Find out more at https://ow.ly/V04M50ViYa2 #Research #ImpactGrant #Funding

This #BrainAwarenessWeek, we’re joining The Neurological Alliance of Scotland to call for greater investment in neurological research. More research means better care, better treatments, and a better future for the 1 in 6 people impacted by a neurological condition. Hear from Trustee and family member Dr Marie Short MBE about why research is so important to the Huntington’s disease community. * Applications to the Impact and Engagement Fund close on Monday 31 March 2025. Learn more at https://lnkd.in/ebsjBbh2 *

Today is Young Carers Action Day 2025! This year’s theme from Carers Trust, “Give Me A Break”, highlights two vital ways we can support young carers; a break from caring and a break in life. Young carers take on huge responsibilities, often without time to rest or enjoy life like their peers. They deserve the chance to recharge, pursue hobbies, and just be young. Schools, colleges, universities, and employers need to recognise the extra pressures and offer the right support to succeed. Today we hear from Eilidh, 10, who shares how much she benefits from the residential breaks, activities and Summer Camp organised by our award-winning Youth Service. #YoungCarersActionDay #GiveMeABreak #SupportYoungCarers #ScottishHuntingtonsAssociation

There is no better day to celebrate our Patron Sarah Winckless MBE who will make history once again as the first woman umpire for the Men’s Oxford and Cambridge Boat Race on its traditional Tideway course next month. Sarah previously umpired the world-famous race in 2021, however due to safety concerns about Hammersmith Bridge at that time it was moved temporarily to Ely in Cambridgeshire. A Cambridge graduate, Sarah won the women’s race three times during her time at the university, between 1995 and 1997. She then went on to win Olympic bronze in the double sculls at the 2004 Athens Games and held the title of world champion in the women’s quad in 2005 and 2006. While reaching the highest levels in the sporting world, Sarah was also coming to terms with the reality that she would one day develop Huntington’s disease. On her retirement from competitive rowing, Sarah became Patron of Scottish Huntington’s Association and a global advocate for the Huntington’s community. Have a wonderful #InternationalWomensDay Sarah! #IWD2025 #AccelerateAction

Applications are open to our Impact and Engagement Fund 🤝 The fund, now in its second year, is for academic and practitioner researchers across all disciplines and at any career stage who are studying or working in an associated education, healthcare or third sector setting in Scotland. Made possible through a generous legacy donation, we award grants of up to £2000 per successful applicant to help promote and disseminate research findings. Find out more at https://ow.ly/jWv550V7yhR #Research #ImpactGrant #Funding