This Campaign is so important and vital to the HD community. I want to encourage other families to come forward and share their experience. You are not alone. You do not need to feel ashamed. HD is a thief that very slowly over time steals your body, energy, health, family, and friends and the person you used to be – Dina De Sousa, Newton Grange

Sláinte / Slán Tony, we still miss you. You know what our girls are now going through – Anna, Dublin

My wife, Triona, visiting Spiddal in Galway, eight months after her diagnosis – Martin

The poem, Buttons, is a tribute and memorial to the three generations I have lost to Huntington’s – Jackie Harrison, Yorkshire

I was diagnosed with HD just over a year ago. My work as an Architect is still important to me and I’d like to share these photos with you. They are 3-D views on an extension in a property in a conservation area, which I have been working on – Michael

In the memory of Mark who had an affinity with animals – Tony, Yorkshire

– Ashley Clarke, Northern Ireland

May 2017. Special HD event at the Vatican at which Dina meets Pope Francis with HD community delegation. Pope Francis said, “May none of you ever feel you are alone. May none of you feel you are a burden” – Dr Paul De Sousa, Husband and Admirer, Edinburgh

I made this wooden Land Rover, my Dad had one just like it, which we grew up with, and brings back lots of camping holiday memories for me. – Mark, Northern Ireland

Trying to hold onto my own sense of identity and independence whilst providing the best care and love I possibly can – Rebecca, North East

Our family adventures – Steve, Ireland

Huntington’s affects every aspect of a sufferer’s life, but they don’t understand how their body and brain have changed. There’s a person behind the disease – Amy Dalglish, Northern Ireland

When we found out HD was in my family it was a shock like being hit by lightning. The hardest part is that it’s not just my story to tell but the only way to dispel the fear is to talk and raise awareness. The Song “Let it Be” for me has captured the sadness and heartache but also hope for a cure. This picture is from a family trip to Iceland a magical Country we visited after my Dad’s diagnosis – Annette (At risk of Huntington’s), UK

I used to be able to run 8 miles with a rucksack on my back but now Huntington’s Disease has taken all my independence – Paul Baggaley, Northern Ireland

To acknowledge the family member, friend or neighbour who comes to our genetic counselling appointments to offer support – Marie Duff, Genetic Counsellor from Dublin (Drawing by Charlie Mackesy)

Some artwork I made to remember to focus on the positives – @zoe_green_art

– Katie M, Ireland

My fantastic husband Graham was diagnosed in 2013 , we have a 21 yr old son Bruce who is untested but we are so  very strong as a family and I’m so proud of them both in  how they cope . Graham says he would shout from the rooftops to raise awareness if it would help. You have to stay positive and live life to the full with lots of laughter and humour x – Lesley W

Meaningful Words from a song that I (Lynn) read at our wedding – Lynn and Rob (Who has HD) 

My lifelong friend Gillian – HD positive and living life to the full. Always here for each other. Forever friends ❤️ – Julie K

This is my mum, Tina and this is a photo of her before she became ill with Huntington’s, I never got to see how beautiful she was in real life so I thought I’d share with everyone how beautiful she was with this photo I found 🙂 Looking back at photos like this make it so difficult to see after they’ve been affected by Huntington’s, miss you mum💕 – Ryan

– Bev Crouch

In memory of my dad and my brother who bravely fought HD without complaining. And remembering my mum whose love for them both was endless – Malcolm, Barbara, Simon and Sarah Throp

My husband Micheál was diagnosed with Huntington’s Disease in 2002. We faced many challenges along the way. By far the most challenging was 2020/21. Lockdown and being diagnosed with Covid 19 took a huge toll on Micheál – Bernadette, Dublin

My Mum died aged 50 due to HD, my Sister Sarah died 2 months ago aged 41 from HD related choking and I am 46 have tested positive and am symptomatic. My wife is my absolute rock and together we can face anything. I want to make people aware that PGD IVF is available to HD families and from it we were  fortunate to ensure our  two wonderful boys will not have HD. You are not alone, the Huntingtons disease association have been a brilliant source of information and support and my advisor have been invaluable – Lee Chalkley

– Clair

My dad and I, 8 years ago! He sadly passed away in October 2019. Living with HD has meant a lot of my memories of my dad are associated with the illness, but seeing pictures and videos from before he got really ill helps me to remember what he was like before HD took over. Miss you everyday Dad! – Rebecca

I wish I could have known you like this; smiling, loving, wrapped up in a rainbow. I would love to know what else we had in common other than our 44 CAG repeats. I hope wherever you are, you’re free and at peace. From a daughter to her mother – Jenny

Doing my diamond art helps me focus and concentrate – I am also able to control my movements when I’m doing it. It’s my favourite piece and I gave it to my grandpa for his birthday – Anna, Scotland

Anonymous, Ireland

Always Look on the Bright side of Life. Sang this iconic song at my Brother’s funeral. Huntington’s Disease may have taken a lot from my Brother but like many others with HD, he never lost his great sense of humour – Carolyn Craig (nee Crout) 

Here is a picture of my daughter’s art performance “Projected Prognosis” about her experience of HD. She made a video of her father at his care home. We just asked him to sit still on a chair against a blank wall. Of course due to HD he couldn’t sit perfectly still. The video is projected on to our daughter (in her 20s) who can sit perfectly still as she is still well; but we don’t know what the future may hold – Anne

Dad had missed his social life more than anything this last year so he was glad to be back amongst friends recently! His mood has improved massively and I’m grateful to be able to share these times with him! – Ryan Stewart

– Denise Gapper, a Huntington’s Disease Family Carer in Ireland

My HD Hero – my Dad. I miss him every single day. He taught me that in the midst of fighting HD, you can still have humor and hope. #KeepFightingtoCureHD – Lauren

Celebrating 50 years of marriage and our beautiful family – The Lythaby Family, Forest Of Dean

My husband and children in 2019 the year before he died – Sarah Lobb, Cornwall

This is for my Dad who Died in August 2020 from Huntington’s Disease. He was 70 years young. And although he was gone in the mind long before, it still hurts very much. For You Dad, Much Love, Your Lyndsay Pops. Xxx – Lyndsay, Ayrshire.

– Laura Clark, Derry, NI

– Gillian, living with pre-symptomatic Huntington’s disease, Lanark, Scotland.

My husband Andy has Huntington’s Disease inherited from his mother and has been symptomatic for around 10 years now. Huntington’s can be devastating for sufferers but our little dog “Dolly” has been our saving grace – Lynne, Newcastle

This is how I have approached being HD positive for 30 years 😊 – Marie, Central Scotland

My husband Mickey tested positive for the gene in 1999, after his Mum became symptomatic. We decided to have kids in 2005 – John (14) was the first PGD baby in Northern Ireland with 3% chance of HD and Annie (10) has less than 1%. We lost Mickey’s mum (age 66) in 2015 to HD. We will never forget her – Moira McNulty

I drew this picture to raise awareness for mental health, it is the Foyle Bridge bridge in Derry where I live in NI – Simon, Northern Ireland

 Our Family – Siobhan, Ireland

We’ve all lost so much, but my hubby is our hero – Angie B, Cornwall

– EH

I am very proud of my son Joe who shows great courage in living with his Huntington’s disease and who has always been interested in helping others’ Pauline Doran, Longford

HD is not such a taboo topic. As a family, we are very open about it and this has only brought us closer together – Rosie Allen, Essex

This shows what families can do for HD. At 70, I did couch to 5k (much to my friends’ shock)! My son, granddaughter, and daughter-in-law, who has, the gene, all ran longer than me, but it drew us all together. HD is horrible. Sometimes though, even horribleness has a good side. It forces us out of our cosy lives and into how precious life and family are. You have to live for the moment……always – Barbie

Whenever the HD cloud descends, you know you have to keep looking for that blue sky, it will come.  It might be in the small things, a funny moment sitting on the sofa, or it can be in the big things, hearing about new trials and options.  It helps me have hope – Anonymous, Scotland

Me and my amazing team ❤️ I am the wife of an amazingly strong HD warrior, Stu. Our family are the strongest, most amazing team. It can be so hard some days, but holding hands all the way we overcome the bad days and enjoy all the great days together! I’m so proud of my husband and children, they are absolute HERO’S! ❤️ – Hannah

Here is a photo of me and mum, Maddie. Maddie, like her mum, is a Huntington’s Disease sufferer, although you wouldn’t know it based on her spirit – Charlie B

This beautiful and very personal piece of writing relates the loss of Greis’ mother to Huntington’s disease. The poem is as captivating as it is devastating. Greis’ talent as a writer is fully matched by her heart and resilience as a human being, and we couldn’t be prouder. In her story “Destination of Faith” Greis, tells us how the passing of her HD-affected mother last year impacted her and her sisters – Factor H on behalf of Greis Erazo Salgado

I think of the hardest things about coming from an HD family is the isolation you feel, like others can’t understand how much it affects your life and how you feel. I hope that this project and the other work done by our HD charities and groups we can help solidify a community and help people realise that they aren’t alone, there is people out there to help. Whilst HD can be devastating it doesn’t have to mean your life is ruined or over, you can still have a beautiful, fulfilling life – Zoë, Scotland

My mum taken far too soon at the age of 37 from Huntingtons Disease, a strong lady, never forgotten – Sarah 

Elaine wrote these words in 2010 and later set them to music. Her Dad had HD and died in 1989 age 67 – Elaine’s husband on behalf of Elaine (who has Huntington’s)

I’m 25 years of age and have tested positive for Huntington’s. I’m covered in ink and in my photo you’ll see why it has meaning to me – Niall Kelly

A classic foggy day in San Francisco as part of a California road trip, Golden Gate bridge just about visible! – Catriona, Scotland

– Robin (Husband)

My Husband passed away in April 2021 after living with HD for 16 years. He was my rock right to the end, he worked hard to help me look after him. We had a great life together with lots of happy memories. There were tough times but I don’t remember them so much. I feel so lost without him! Adrian was never defined by HD, whoever he met remembers him for his sense of humour. We have met many families and professionals we would never of met but for HD and they have all been a Joy to be with. I believe friends and family and I are so much closer because of HD – Gill Lomas

From one superhero family to yours, HD’s days are limited, we won’t give up, we will fight for those we have lost, those yet to come, and we will win – Sophie

El, Scotland

Family photo at Drum Castle, first time getting together since Covid. I have HD, I was testing positive 30 years and symptomatic for 6 years. I have a positive attitude most of time. My daughter is positive and we have the most gorgeous IVF grandson who I feel extremely lucky to spend time with. Son is getting tested soon. I’m currently on the new drug trial which will be great if it works out – Lorna Freeland, Aberdeen 

Hi, I ‘m Lorraine and I am moving steadily along the Huntington’s journey.  I have balance issues and have to watch where I walk, and some flicking of my hands, helped by the use of a special mouse at work. I am thankfully able to work still, although my brain is slowing down a bit and it takes me longer to find things in my brain “filing cabinet”.  My dad was not diagnosed until his 70s and sadly died two years ago (photo attached).  We had no idea of this disease in his family.  I am proud to be a Huntington’s Warrior and hopefully with my beautiful family will “weather this storm”.  I am sure I am going to be a handful to them – Lorraine, Morayshire

John was my life-long partner and true friend. Living with Huntington’s disease his “bolt from the blue.” No family history. Random. My poem a tribute R.I.P. – Fred

HD has been a tragic part of our family for 50+ years. I have given everything pure love at the same time, just like my Mam and grandmother did to me. My sister Helen tragically died from HD too. My daughter Kim tested negative in 2017 which means (thank Heavens) HD stops in our family with me. I will fight to play with my grandkids. Life is only a few moments of time and what matters most is showing pure love to each other. I won’t be labelled by my HD. I am still here and still fighting – Sandy Patience, Avoch until 1999 and now in Inverness with Laura xx

I did not know my mother had Huntington’s till after my three children were born. Medical research developed the test that showed I had “escaped”. This poem expresses my gratitude  – Chris Blake

This is a photo of me and my Dad, who has been symptomatic with Huntington’s Disease for over a decade now. Focusing on the good days helps me to find the strength to battle through the bad – Megan Ashmore

In loving memory of; Mum, my brothers Ricky, Jason, Aunty Roselle and Amanda. In honor of my courageous HD warriors; brother Paul and sister Julia – Tonita S, Lincolnshire

Christy, my late husband and soul mate, pictured here in 2015. He inspired me to pursue a career in advocacy – Anne, Dublin

My gene-positive husband, his late Mum and our 4 at risk children – three generations of Huntington’s disease – Nikki Taylor, Hartlepool

I have Huntingtons Disease. I’m married to husband Paul & 2 girls Yasmin (19) & Jade (17). With the help of my whole family, friends & Fife Huntingtons team, I would not be standing here today – Sharon Annal, Scotland

This cloud has followed me everywhere, and even when everything else around me has been happy and good, the cloud has never left. However, just like an awkward, annoying pain in the ribs, that you know is not going away, you just put up with its presence – Anon, London

– Anonymous, Dublin

My brother John was five years older than me, in the words of High Court Judge Freeland, QC, the most brilliant lawyer of his generation. – Quote: Charles Sabine. Photo of Charles and John by Martin Sølyst / erikbjorn.dk

This is a photograph of myself and my three daughters, An HD Family. Jackie (the bride), Lynne and Jude 38. Their mother died of HD in 1997 aged 46. Jackie has tested negative while Lynne and Jude both positive. – Jock, Moray

Song lyric which was instrumental for me staying positive & keeping me sane when getting the diagnosis – Heather Hooisma, HDANI

Trying to remember Dad before Huntington’s symptoms developed feels impossible at times, photos can help bring back memories – Maya, North East.

Relentless through the generations – Steve, South Coast of England

The HD Road… Long and Winding – Anonymous, Hampshire

Stan and I will celebrate our 40th wedding anniversary this year. We have had many happy times together but in recent years it is tough to see my dear husband struggle with Huntington’s Disease – Elzbieta, Cork

– Victoria Mullin, Liverpool

This my dad and my son. My dad is doing pretty well at the moment but the worst thing about this disease is watching the person you love slowly change and knowing that it will happen to me as I am Gene positive. Also the risk to my children. As a family we are very positive though and enjoy every day that we can – Claire, Erskine

Huntington’s, A Lifelong Journey – Richard, Northern Ireland

Through the years, HD has always been there. It took my father-in-law in 2002, my sister-in-law in 2017 and will one day take my wife. We get by with laughter and love, and will do so until the final day comes – Douglas

– Sarah Winckless MBE

Sylvia’s mum Jeanie was diagnosed in 1990 & died in 2006. My lovely wife Sylvia was diagnosed in 2004 & symptomatic in 2013. She was so kind hearted & full of fun (even known as a party animal by some). She is so strong in spirit but frail in body now huntington’s takes it’s toll. Her biggest concern are her children, we are all so proud of her she never gives up. We all support each other as huntington’s is such a horrible condition as a family you are all in it together so to speak & you have to be strong. We are winning it will not stop us living our lives – David J

Egypt – Anna’s favourite holiday of all time, living with friends in Cairo, sailing on the Nile, road trip to Dahab on Sinai peninsula and of course the pyramids – David, Scotland

– Heather M, Wiltshire

When my husband was diagnosed with HD , I understood things that had happened in the past, like mood swings & short temper. He’s always worked hard, & it’s heartbreaking to see a strong man fade away. We also worry for the rest of the family – Jean , wife and carer

HD has been part of my life for as long as I can remember. First my grandfather and now my darling mum Christine have both battled HD for decades. Whilst HD effects everyone in so many ways, you can’t comprehend the physical, emotional and mental toll it takes on those suffering, but also those caring for their loved ones. Enjoy every moment and live your life to the fullest, make special memories that’ll help get you through the dark times, appreciate those around you, stay patient and try to understand how they’re feeling, and don’t forget to tell those affected you love them – Jonathan

Me and Steve celebrating his 40th Birthday. He didn’t make it to his 50th but, by God, he gave HD a good run for its money! He didn’t give up celebrating what time he had left and will always be my absolute hero! Love & Miss You Steve! – Trish xx

I live in Scotland and Mum was diagnosed with HD in 2013. Dad, a man of very few words wrote this poem, I wept when he read it to me. The heartfelt emotion of my Dad and his unwavering love for my Mum is beautiful. My Mum – Maureen – developed the habit of repeating my Dad’s name, Edward, constantly. Their love is testament to the fact that even though this disease takes so much it cannot destroy the love that these 2 people share. I am so proud to call them Mum and Dad – Deirdre Plews Shearer 

My Beautiful wife Karen, Before it Her father fought it and some of his siblings. Long have we guessed she would have it. Never expected it to announce itself in the way it did over 2 years ago. Very proud of my wonderful wife – Eoin-Cavan

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 – Andy Klom

Life changes on how you look at things. My family is everything (all my relatives) and it will always keep me strong and as positive as I can be. Finding out I have the gene was a hard. Being told that there may be drug trials to help was a fantastic moment however brief, but like most families with HD hope is very important, I will continue to stay positive an keep everything crossed that a cure is found – Frank Allen

I really enjoy cooking and baking for Anna, unlike when mum and dad cook she always eats everything I make. I love it and so does Anna – Leila, Scotland

Hi, I am steph I have this illness with my dad and my sister and my grandad – Steph

Me and my beautiful mum, who was unexpectedly diagnosed with Huntington’s disease in 2017. Our biggest supporter in life who always has a smile on her face – Lucy

– Anon

My husband was diagnosed in March on 2020 so we are the start of the HD journey, my father in law also had its & his dad before him and so on. It’s feels scary as we have seen what happened with my father in law but we are trying are best to just deal with things & be as positive as we can be live are life as best as we can. We won’t let Huntington’s rule what we do we are determined to enjoy life as best we can and make memories that will last for ever. 💜 – Amanda, Clark and Kayi Birnie 

After a traumatic marriage I finally found a wonderful man with whom to share and enjoy my life. He had warned me that he was at risk but we married. Unfortunately within a year he became symptomatic, but he was determined to make the most of his life. We travelled the world, went to shows and cleared our bucket list. Unfortunately he spent the last two years in a home but we still managed to get out to visit gardens, cafes, etc. He has now been taken but I would do it all over again. Such an amazing man and such a crippling disease! – Alone now

My name is Charlie, I am 28 years old and live in the UK. I started You, Me and HD, after the diagnosis of my Dad in March 2019. My dad found out he had Huntington’s Disease two days before I gave birth to my first child and his first grandchild. You, Me and HD isn’t just here to tell my story, I hope through speaking out will help me connect to others suffering as a result of HD. I hope this educates people and helps them look beyond the facts in font in front of them. I want them to see the faces and the stories of our experiences living with this rare disease. I also want a safe place anyone can come to and be heard especially those having to make the choice to be tested and coming to terms with their results and indeed their future – Charlie HD Awareness Campaigner 💚