The impact of Huntington’s disease can be incredibly difficult for those living with the disease and for their loves ones. It has been fascinating, heartbreaking, life-affirming and humbling talking to Huntington’s disease families who have shared their experiences. I am supporting the Family Matters campaign to raise awareness of Huntington’s disease, so that the public understand not only how devastating the disease can be but also to celebrate the amazing strength and positivity that some families with Huntington’s have.

The British Dietetic Association is pleased to support Huntington’s Disease Awareness Month and raise the need for greater support for people living with the disease. Nutrition and diet are a key challenge for people living with Huntington’s disease, from ensuring sufficient food and drink intake to dealing with swallowing difficulties. Dietitians have a crucial role to play as part of the multidisciplinary care team to support people living with the disease and their families to ensure the best possible standard of life and access to the best nutritional care plans. BDA Neurosciences Specialist Group Chair, Karen Robinson RD, said: “The Family Matters campaign is doing great work to highlight not only the impact of this disease on individuals but the family and friends around them. I’m delighted we are backing this campaign and can share their stories, and highlight the important role dietitians can play in supporting families”.

I’m contributing because the HD Family has an important story to tell. Our story, albeit tough, is one of many and sharing it can help others. The HD Family can take assurance knowing they are not alone. I want to raise awareness to urge others to seek the support they need and to remind people to stay positive and strong.

I’m sharing a photo of my family for the Living History campaign. I want people to understand how Huntington’s can affect more than one generation, and the toll it can take on family carers. Family really does matter in Huntington’s.

I’m contributing because I want to see a change in the way people with Huntington’s disease are perceived – let’s help people to understand how the disease impacts on behaviour. I’m fed up of people judging or assuming people with Huntington’s disease are drunk. Let’s erase the stigma!

From all of the patients, family members and the HD team here at Bloomfield, Dublin we want you to know that we are thinking of you. We are all fighting this battle together and we hope for breakthroughs in the not too distant future.

I contributed to the Family Matters campaign to help people find the wonderful community out there to support them. No one is denying that Huntington’s Disease is awful, for the person affected, carer, family and friend but there is hope, there is love and there is support. Whether it is your local or the amazing online community, you are not alone in this Huntington’s journey!

I am contributing to the Family Matters campaign in order to raise awareness and educate others on Huntingtons Disease and the impact it can have on a whole family.

DFI fully supports this important campaign, Family Matters. This campaign spotlights the immense impact that a disability has on individuals and their families. The rippling effect of neurological conditions such as Huntington’s Disease across generations and families cannot be underestimated. Campaigns such as Family Matters are critical to highlighting the importance of developing timely, and holistic responses.

Speech and language therapists support people living with Huntington’s Disease to communicate, eat, drink and swallow safely. However, we know that many people can’t always access rehabilitation to meet their needs. We’re delighted to back the Family Matters campaign and thank everyone for sharing their experiences. We hope these stories will help to raise awareness of the challenges families face and how they can be better supported.

As husband and caregiver to my wife Saskia, who has Huntington’s Disease, I would like to express my support to HDA Ireland, and share my solidarity with all those families that are struggling every day with the effects of HD. Saskia and I have always lived with the awareness that HD could enter our lives, but now that it has doesn’t make it any easier. HD strikes indiscriminately and destroys lives, we hope and pray that next generations will no longer need to suffer this scourge. Meanwhile, we are very grateful to all those wonderful doctors, other care providers, and local community in Ireland that help Saskia so much to get through life, one day at a time.

I believe this last year has given many of us an idea about what it means to be isolated or alone. When a family is navigating this disease, the lack of public awareness, and therefore empathy and understanding, isolates families and can make them feel they are facing the challenges alone. I am delighted that the Huntington’s Disease Alliance is working together to achieve the greatest impact we can. When people understood what was happening to Mum, they were incredibly generous and supportive, adapting to what she needed so she was able to keep doing as much as she could for as long as she could. This helped us as a family and for that I am incredibly grateful. Through this campaign I want to increase the awareness of Huntington’s disease so others can have the knowledge and confidence to support their friends and neighbours.

BAPEN is very pleased to support the Family Matters campaign. People living with Huntington’s disease can experience a range of nutritional challenges. The movement disorders associated with Huntington’s can mean that people need to adjust their diet to ensure they are taking in enough calories, nutrients and hydration, and problems with mood can also interfere with eating and drinking. Swallowing difficulties are common as the disease progresses. All of these challenges can lead to weight loss and malnutrition which can significantly worsen outcomes for people already living with a difficult disease, and can place a higher burden and stress on carers. We are pleased to see a number of people who have contributed to this campaign talking about the difficulties the condition presents when it comes to food and drink and hope that this will lead to better understanding and support.

I am happy to contribute to this campaign, because I feel that Huntington’s disease deserves to be recognised on its own, without reference to Parkinson’s or Motor Neurone. I am tired of seeing blank faces when I say Huntington’s disease, and then have to describe it to others by its devastating symptoms.

The Neurological Alliance of Ireland is proud to support the Family Matters campaign. As the national advocacy umbrella, we are deeply cognisant of the need for greater awareness and support for all those impacted by Huntington’s disease.

The Family Matters is an excellent campaign to raise awareness of the extraordinary challenges for people living with Huntington’s disease and their families. The Carmichael Centre for Voluntary Groups is proud to support this campaign and the wonderful and much needed work of the Huntington’s Disease Association of Ireland.

I am well aware of the amazing work done by the Huntington’s Disease charites in supporting those with #HuntingtonsDisease and their families, and I am glad to support their important #FamilyMatters campaign this year.

Care Alliance Ireland is aware of the significant challenges facing members of Huntington’s Disease families over generations. We hope the Family Matters campaign will increase awareness and lead to improved supports for people living with Huntington’s disease and those family members supporting them.

We are contributing because contributing could help bring change! It could help to change perceptions, educate those fortunate enough to have never heard of Huntington’s Disease, improve services and ultimately help push forward ground-breaking research which could help CHANGE the lives of all our families affected by this devastating illness.

As Patron of the Huntington’s Disease Association of Ireland, may I express my support for this important campaign. I have no doubt it will provide invaluable support and a source of vital assistance for those who have been diagnosed with Huntington’s Disease, and the family members who care for them. I thank all those who have contributed so generously to the campaign, offering their skills and personal experiences to help raise awareness of the challenges faced by all those living with Huntington’s Disease.

The Nutrition and Hydration Week team is pleased to support the Huntington’s Disease Alliance this May with the Family Matters campaign. People living with the symptoms of Huntington’s disease often require a great deal of support with nutrition and hydration and we hope that colleagues across health and social care settings will get involved in helping to raise awareness of this difficult condition and lend support where they can to help improve understanding of some of the challenges families face. Good luck with the campaign!

Improving your brain health can be a target even in the presence of devastating diseases like Huntington’s. We can take steps to strengthen our brain function to help it cope with disease, as well as to reduce our risk of other types of neurodegenerative diseases like Alzheimer’s Disease. The human brain is the most complex entity in the known universe and its remarkable manifestation of human consciousness remains even in spite of disease. The Global Brain Health Institute aims to help build brain health across the world and we are delighted to offer our strong support to people and families affected by Huntington’s Disease, and to those campaigning on their behalf.

Carers UK fully supports the findings of the new research for Huntington’s Awareness Month which shows just how tough caring can be for someone who is at risk of or has been diagnosed with the disease.  We can see how clearly this can affect relationships, health and wellbeing. The more knowledge we have of complex conditions like Huntington’s, and better recognition, identification and support for family members who care, the better.

Huntington’s is a traditionally neglected neurological condition, somewhat left behind in the race for public awareness. The Family Matters campaign that is a shared platform for the four charities across the UK and Ireland is inspiring, and informative. I would urge my colleagues to spend time looking at the advocacy world and admiring the courage of this community.

I decided to help raise awareness about Huntington’s disease because people need to know about how tough a journey it is; the devastation, hurt and loss. Helping to raise awareness might help to one day find a cure for this horrible disease which gives me a brilliant sense of pride and satisfaction.

There is absolutely nothing good to be said about Huntington’s Disease except perhaps that it is rare. But that is small comfort to the families who face the misery of it for it is inherited, it is progressive , it is disabling, life-limiting and a diagnosis no-one wants to hear. But hear it they do and that is when family comes into its own, somehow finds a courage that is beyond miraculous, musters coping skills, galvanizes hope and puts it all to work for those they love and for all the strangers who face the scourge that they face. May Awareness Month wants to shine a light in this darkness where stigma and misunderstanding add to the isolation of struggling individuals and families. They need and find a depth of courage that is beyond inspirational but the more their condition is understood, the more the world adapts to it with understanding and practical help, the more the quiet relentless suffering is known the easier it is to live with HD and to feel the power of being part of a caring human family. Please, if you can help- do.

Lack of awareness about HD is at the heart of so many of the struggles we face – so I’m very happy to be involved in this campaign. Please join in too! Help us capture our amazing and diverse HD community on the Living History page.

I am happy to add my name in support of Huntington Disease Alliance UK and Ireland’s Family Matters Awareness Campaign. I must say how much I admire those who have to endure this particular illness on a daily basis and their families who support their loved ones with courage and determination.

Rare Diseases Ireland is proud to support the Family Matters campaign. Huntington’s disease is a rare condition, and common for many people living with a rare disease is the important role that family has supporting the person living with the rare condition. Without our families people living with rare conditions may struggle with daily life; for this reason  Family Matters for all in the rare disease community. We are proud to have HDAI as member of the rare disease family in Ireland.

Huntington’s disease doesn’t just affect one or two members of the family, it affects everyone! But because it is usually a family affair, not a lot is known outside of the community about the difficulties that HD family members face whether they have the gene, or not. Family Matters is a brilliant campaign giving everyone touched by HD a chance to share the complexity of their experiences, and to help people outside of the family understand what it means to be part of a HD family. I hope that by sharing your experiences, it will raise more awareness of Huntington’s disease, desperately needed in order to develop better services and treatments. It will also help researchers like myself in aligning our research to best support the needs of the HD family, to produce better science and push for these developments from a scientific perspective. But mostly I hope that it will validate the often isolating feelings that can come with being part of a this small community, and provide some solace in seeing that many others in different cities and countries across the world also face the challenges you face, and that their messages can give you strength and support.

As Lord Mayor of Dublin I am delighted to offer my support for Huntington’s Disease awareness month. My vision is for an inclusive, progressive sustainable society for all families especially our most vulnerable. This Family Matters campaign is vital in supporting Huntington’s families to help them realise a better future.

The HD stories not only give us a window to the illness experience, but also illuminate the meaning of the disease to the affected person. Amongst them, portray the narratives of love, strength and resilience centred on family relationships. In our quest as HD health professionals, researchers and friends to better understand the world of HD, we must foremost hear these stories. The Family Matters Campaign allows us to connect to their intimate experiences; the accounts that give voice to suffering and celebrate human triumphs. These personal stories hopefully in return will help raise awareness, generate support and facilitate better care to HD individuals and families.