A picnic of awareness-raising champions
This Huntington’s Disease Awareness Month we have been overwhelmed with the incredible awareness-raising activity you have all been sharing on social media. We’ve seen incredible fundraising, informative posts, digital events, honest life stories, challenges and more! Lockdown has been a challenge for all and you have risen to the occasion doing all you can in these uncertain times.
Below, is an interview with Jackie Harrison, a well-known member of the Huntington’s community and #HDAwarenessMonth advocate. Jackie discusses her awesome awareness-raising event ‘Sybil’s Picnic’ and gives an insight into her experiences of Huntington’s disease.
“In May 2020, dozens of people around the world joined together to hold virtual Sybil’s Picnics. These picnics were part of our overarching Huntington’s campaign Hounds 4 Huntington’s.
Hounds 4 Huntington’s was inspired by our much loved, much missed border terrier, Sybil, who came into our family in 2003 around the time my brother Mark was beginning to show symptoms of Huntington’s disease. Hounds 4 Huntington’s raises money for various charities by the creation and sale of hand-stitched felt Sybil dogs. People can order their own personal design and many members of the Huntington’s community have taken their Sybil dogs around the world to raise awareness of the disease.
Sybil was Mark’s constant companion. Mark had graduated from Leeds University with a degree in English but cognitive and mental health problems prevented him from pursuing the academic career that had been his dream. Whilst he was still able to walk, they had many adventures together rambling, exploring and chasing rabbits!
When we lost Sybil we were all devastated, their walks had become shorter as Sybil aged and Huntington’s began to severely affect Mark’s ability to go on the walks they’d loved.
Being a full-time carer for Mark left us isolated at home but stitching the Sybils, sending them to new homes and following their adventures meant we were connected. A small dog made out of felt that would go on to travel the world.
#SybilOnTour has raised awareness in the summit of Everest, scuba diving, countryside, seaside and cities all over the world.
Thousands of people now have a Sybil and by sharing photos on social media the Hounds 4 Huntington’s community raises awareness and funds for Huntington’s charities.
Mark loved the fact that his furry soulmate had left a legacy and loved to see where Sybil would go next. Each new adventure allowed us both to travel from our own front room.
Three years ago we held our first virtual #SybilsPicnic. With picnics enjoyed all over the world and shared to raise awareness of Huntington’s in May.
This year, our third #SybilsPicnic was especially emotional as it was the first one since Mark lost his battle with Huntington’s.
It was bigger than ever as whilst the lockdown made in-person picnics with friends impossible, virtual picnics connected people with families affected by Huntington’s across the world, from Japan, Nepal, Canada, Spain, Italy, Russia and France as well as in the UK.
For some, it was a moment to remember their loved ones with photos of family members included in the picnic or a favourite plate made by a loved one at a pottery class, poignant reminders of loved ones lost to this disease and a reminder they are never forgotten.
Each picnic was an opportunity to #SpeakOut4HD for those who no longer have a voice.
Of course, many border terriers joined including our border terrier Spike and even some cats!
Each year, at #SybilsPicnic we have prizes. Miss Sadie - the queen of the picnic won this year’s prize for best afternoon tea set. Harley even found time in his fundraising schedule to have a picnic and won the prize for best artwork.
Sadie
Harley
A huge thanks to everyone who shared photos of their picnics, it was a day where we connected with Huntington’s disease friends and families across the world, a day filled with love, cake and at the classiest picnic (prize to CJ ) a glass or two of fizz.
From a small town in Yorkshire to the world’s highest mountain the little felt dog will continue to raise awareness of Huntington’s on tour and at home.
You can see all of the photos from Sybil's picnic by searching the hashtag #SybilsPicnic on Twitter, Instagram or Facebook. We look forward to more amazing picnics in awareness month 2021.”
A huge thank you to Jackie for sharing her story and working so hard to raise awareness of Huntington’s. Thank you to all who held a picnic this year and to those who are hosting other fantastic awareness month events and activities.
You can get involved in awareness month just like Jackie, here.
If you are affected by Huntington’s disease and need support or advice, please contact us on 0151 331 5444 or email [email protected].
COVID-19 has had a dramatic effect on our way of life. This will significantly impact our fundraising efforts and ability to help and care for those affected by Huntington’s disease. If you would like to donate to help us support those affected by Huntington's during this time, please click here. #HDAppealCV19
This Huntington’s Disease Awareness Month we have been overwhelmed with the incredible awareness-raising activity you have all been sharing on social media. We’ve seen incredible fundraising, informative posts, digital events, honest life stories, challenges and more! Lockdown has been a challenge for all and you have risen to the occasion doing all you can in these uncertain times.
Below, is an interview with Jackie Harrison, a well-known member of the Huntington’s community and #HDAwarenessMonth advocate. Jackie discusses her awesome awareness-raising event ‘Sybil’s Picnic’ and gives an insight into her experiences of Huntington’s disease.
“In May 2020, dozens of people around the world joined together to hold virtual Sybil’s Picnics. These picnics were part of our overarching Huntington’s campaign Hounds 4 Huntington’s.
Hounds 4 Huntington’s was inspired by our much loved, much missed border terrier, Sybil, who came into our family in 2003 around the time my brother Mark was beginning to show symptoms of Huntington’s disease. Hounds 4 Huntington’s raises money for various charities by the creation and sale of hand-stitched felt Sybil dogs. People can order their own personal design and many members of the Huntington’s community have taken their Sybil dogs around the world to raise awareness of the disease.
Sybil was Mark’s constant companion. Mark had graduated from Leeds University with a degree in English but cognitive and mental health problems prevented him from pursuing the academic career that had been his dream. Whilst he was still able to walk, they had many adventures together rambling, exploring and chasing rabbits!
When we lost Sybil we were all devastated, their walks had become shorter as Sybil aged and Huntington’s began to severely affect Mark’s ability to go on the walks they’d loved.
Being a full-time carer for Mark left us isolated at home but stitching the Sybils, sending them to new homes and following their adventures meant we were connected. A small dog made out of felt that would go on to travel the world.
#SybilOnTour has raised awareness in the summit of Everest, scuba diving, countryside, seaside and cities all over the world.
Thousands of people now have a Sybil and by sharing photos on social media the Hounds 4 Huntington’s community raises awareness and funds for Huntington’s charities.
Mark loved the fact that his furry soulmate had left a legacy and loved to see where Sybil would go next. Each new adventure allowed us both to travel from our own front room.
Three years ago we held our first virtual #SybilsPicnic. With picnics enjoyed all over the world and shared to raise awareness of Huntington’s in May.
This year, our third #SybilsPicnic was especially emotional as it was the first one since Mark lost his battle with Huntington’s.
It was bigger than ever as whilst the lockdown made in-person picnics with friends impossible, virtual picnics connected people with families affected by Huntington’s across the world, from Japan, Nepal, Canada, Spain, Italy, Russia and France as well as in the UK.
For some, it was a moment to remember their loved ones with photos of family members included in the picnic or a favourite plate made by a loved one at a pottery class, poignant reminders of loved ones lost to this disease and a reminder they are never forgotten.
Each picnic was an opportunity to #SpeakOut4HD for those who no longer have a voice.
Of course, many border terriers joined including our border terrier Spike and even some cats!
Each year, at #SybilsPicnic we have prizes. Miss Sadie - the queen of the picnic won this year’s prize for best afternoon tea set. Harley even found time in his fundraising schedule to have a picnic and won the prize for best artwork.
Sadie
Harley
A huge thanks to everyone who shared photos of their picnics, it was a day where we connected with Huntington’s disease friends and families across the world, a day filled with love, cake and at the classiest picnic (prize to CJ ) a glass or two of fizz.
From a small town in Yorkshire to the world’s highest mountain the little felt dog will continue to raise awareness of Huntington’s on tour and at home.
You can see all of the photos from Sybil's picnic by searching the hashtag #SybilsPicnic on Twitter, Instagram or Facebook. We look forward to more amazing picnics in awareness month 2021.”
A huge thank you to Jackie for sharing her story and working so hard to raise awareness of Huntington’s. Thank you to all who held a picnic this year and to those who are hosting other fantastic awareness month events and activities.
You can get involved in awareness month just like Jackie, here.
If you are affected by Huntington’s disease and need support or advice, please contact us on 0151 331 5444 or email [email protected].
COVID-19 has had a dramatic effect on our way of life. This will significantly impact our fundraising efforts and ability to help and care for those affected by Huntington’s disease. If you would like to donate to help us support those affected by Huntington's during this time, please click here. #HDAppealCV19