Name of youth service or program

Scottish Huntington’s Association Youth Program (SHAYP)

Organisation providing service

Scottish Huntingon’s Association (SHA)

Region the service or program covers

Scotland

Explanation of service/program

SHAYP is the Scottish Huntington’s Association Youth Project which works with young people aged 8-25 living in families affected by Huntington’s disease. In 2001 SHA realised that young people growing up in HD families needed their own support. Thus, the youth service was born. The timeline below shows how SHAYP Life has developed over this period:

SHAYP aims:

• To increase children and young people’s knowledge, understanding and awareness of HD
• To provide one-to-one/group support for children and young people living in a family with HD
• To improve parent’s abilities to communicate with their children about HD
• To improve professional awareness of the impact of HD on children and young people

SHAYP provides an individual service for each young person which might consist of some or all of the following elements:

• One-off contact
• Monthly individual support visits
• Group sessions
• Fun Activities
• Newsletters
• Phone contact
• Email contact
• Text Message contact
• Facebook support
• Websites

SHAYP also provides support to parents and professional staff and gives advice on communicating with young people about HD

How can young people & families contact/participate in the service

You can contact SHAYP by getting in touch with one of the staff

Kirsten Walker
Senior Specialist Youth Advisor
Unit 2a David Dale Business Centre
159 Broad Street
G40 2QR
T: 0141 5562136
M: 07983 724201
Kirsten.walker@hdscotland.org
Areas: South/West Scotland

David Drain
Specialist Youth Advisor
Clinical Genetics Centre
Ashgrove House
Foresterhill Hospital
Aberdeen
AB25 2ZA
T: 01224 550063
M: 07854 769571
david.drain@hdscotland.org
Areas: North/East of Scotland

Grant Walker
Specialist Youth Advisor
Unit 2a David Dale Business Centre
159 Broad Street
G40 2QR
T: 0141 5562136
M: 07903 840524
grant.walker@hdscotland.org
Areas: Central/South/West Scotland

Peter Carruthers
Specialist Youth Advisor
Whytman’s Brae Hospital
Whytman’s Brae
Kirkcaldy
Fife
KY1 2ND

Name of youth service or program

European HD Youth Camp

Organisation providing service

Huntington’s Disease Youth Organisation (HDYO)

Region the service or program covers

Europe

Explanation of service/program

We aim to hold regular (annual) European HD Youth Camps with the help of many European HD Associations. Young people impacted by HD (15-25) can attend the event, so long as their HD Association is supporting the event with us. This is a wonderful event for young people to meet others impacted by HD from all across Europe. The event is free to attend for those who get to go.

How can young people & families contact/participate in the service

For more information about the European camp please contact HDYO at info@hdyo.org