Health and wellbeing

Funding level: Up to £1,000

Description

The Phelan-McDermid Syndrome Foundation UK (PMSF UK) is a registered charity in the United Kingdom. PMSF UK provide a supportive and inclusive community for those who have or know someone with PMS - a rare abnormality caused by a deletion, or loss, of the terminal segment of chromosome 22. There are almost 200 individuals who are diagnosed with PMS in the UK & Ireland. All individuals with PMS have difficulty communicating; many are non-verbal and have issues around cognitive development and mobility and most have low tone in their limbs. All people diagnosed with PMS need additional care to support their daily lives.

A Family Day gives those with PMS and their families the opportunity to come together to meet other families in the same situation and share knowledge and support.

PMSF UK run a national family day every two years. They are always a huge success and enjoyed by all. In 2017, 300 people attended including 52 families with children or young adults with PMS . It was a great opportunity for all families to get together (including extended family and carers) and spend time together. Families shared stories and experiences and practical information. One of the best things about the day was families meeting families who know exactly what they are dealing with and share in the challenges of coping with this rare disease. Immediately there is a strong bond, as you understand each other’s lives so well. Sharing the triumphs of our children and understanding the progress they make may look small but for the families involved they are huge. Spending time with people that understand that is so important and that friendship gives you the strength to carry on when your family is struggling with managing the condition.

These days together are vital for the small community of PMS individuals and their families and we are planning to hold another Family Day in 2019. Thank you for your support.

Project Video

Phelan-McDermid Syndrome Foundation UK

Moment of Pride

Having the opportunity to spend time with people that understand you is so important and that friendship gives you the strength to carry on when your family is struggling with living with Phelan-McDermid Syndrome.

Location: London