On Saturday 20th May we had the PMSF UK & Ireland Family Day at Wyre Forest School in Kidderminster, near Birmingham, UK. 300 people attended with 52 families affected by Phelan-McDermid Syndrome from the UK, Ireland, France and the US.
There were many activities for kids throughout the day. Music therapy, animals, sensory rooms, sports activities all catering to the needs of PMS families.
Dr Katy Phelan PMSF founder and Sue Lomas PMSF president attended from the US. There was a lot of discussion about raising awareness of the syndrome, the importance of documenting natural history of those with PMS, the differences with larger and smaller chromosome deletions and the changes and medical issues that families must address as their children get older. Dr Eva Loth and Dr Anna Riddell held a medical session and Sue Stokes ran a behavioural clinic all benefitting families dealing with this rare genetic condition.
One of the best things about the day is 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.
We will have local family days in 2018 and info will be available on the website later in 2017. In May 2019 we will have another PMSF UK & Ireland Family Day, details not yet available.
To date PMSF UK have been able to provide our families with over 40 awards for PMS children and their siblings. Awards going towards horse riding, swimming, sports & art clubs and additional therapies. The trustees at PMSF UK have agreed to provide a number of different type of awards going forward so please look below and if you’d like to apply for your family then click on the application below and e-mail the completed form to:
Applications can be submitted at anytime and will be reviewed 3 times a year. Families will be informed shortly after the cut off date with the final decision. January 31st 2017, May 31st 2017 and September 30th 2017. If applying for more than one award please complete an application form for each award and indicate which is your priority.
- PMSF UK is a small charity and will seek to support as many awards as it can afford. The trustees will make decisions on awards and affordability.
- Families can apply for multiple awards and may apply several times (within the same year or multiple years). The trustees will seek to share the benefits across the whole community; so will take re-applications into account if they need to prioritise awards.
- Families are responsible for any tax obligations associated with receiving an award.
These awards are for a PMS individual for an enriching activity such as sports, art or music clubs. Maximum application £250.
These awards are for the sibling of a PMS individual for an enriching activity such as sports, art or music clubs. Maximum application £250.
This award is for the parents or guardian to access training courses to support the family. For example – sign language, behavior or sleep management, manual handling or holistic courses. Maximum application £500.
This award can be applied to support the PMS individual with specialised sensory toys or equipment, communication aids or applications (this does not include a family computer). Maximum application £500.
This award is for a family day out that includes the PMS individual (e.g. zoo, theme park, aquarium). Maximum application £250.