Volunteering! It can fill our hearts with dread. Will I be stuck forever unable to pull out? Will I have too much put on me? Can I say no without feeling guilty? But I know nothing! I’m too shy, quiet, loud, outspoken!
All this has gone through my mind at one time or another but take heart, fortunately the PWSA give excellent support and training, including hosting Zoom meetings!
We all need each other, and we are stronger when we know others have some understanding of our situation. We all have something to offer other people. Advice, a gem of knowledge, an encouraging word, a phone number or name, a funny story, a way forward when at times there seems to be none. Simply someone who can understand even if we don’t have answers to all problems.
Now we can all come together on social media and have been able to actively offer up ideas and know how fairly immediately when needed. Many of us are volunteers without knowing it as we read through posts and add our understanding, supportive comments, and information to help someone in the PWS family navigate a new challenge or encourage someone to keep going during a bleak time.
If you fundraise in any way and offer your skills and abilities to the association, you are a volunteer and we who haven’t those capabilities and talents thank you for the part you play.
If you have attended the parent-to-parent groups, you are volunteers. The Zoom parent to parent groups were created during the lockdown to allow parents of children and adults around the same age to be in contact to support, encourage and give each other the benefit of knowledge gained. Thank you for sharing your life experience.
In the adult group, we have focused on topics close to parents’ hearts so that those with an interest or experience can take part. Care provision. Residential care, supported living or home? Contact with the police. From being previously part of a London parents’ group of mixed aged children and adults, it has been a real eye opener to hear how the support and funding of our PWS children differs around the country. How differently agencies engage with us and how easy or more likely hard it is to advocate for our offspring when we have finally got in touch with social services or the NHS or DWP or our local education department!
To hear others’ stories can give hope but also offer an open door to try something new.
So why do I volunteer? For me personally, for as long as I can remember, it has been in my DNA to be involved in whatever I am part of.
I love to attend events and share life experiences and from there be part of planning and organising.
I am innately nosey, have some opinions and like to fill my time meeting new people in the same way that others like sport or creative activities!
From committees and PTAs to organising quizzes, parties, meet ups, answering the phone, and lately Zoom meetings, I love to be part of a team and see things happen with all the talents that are on offer. It is a joy to see ideas at the table develop into reality and get others on board.
So, whether you have very few hours spare or, like me, a few more, we can all take an active part in something that is close to us. We all have abilities and expertise in different fields, and we can offer what we can when we can. I am in no doubt from what I see in the PWSA magazine and on social media that we have a magnitude of parents and carers out there ready and keen to be part of the PWS family as needed. The association is in good hands as we mark our 40th anniversary in 2022.
Seldom do we help others without finding we have helped ourselves.
Would you like to volunteer for PWSA UK?
There are lots of ways to get involved as a volunteer for PWSA UK, from organising days out and Christmas parties for families in your local areas, to supporting existing Familynet volunteers at days out, or supporting at fundraising events.
Even if you are only able to help out occasionally, or support another more active volunteer in your area, we would love to hear from you.
PWSA volunteers are parents, aunties and uncles, grandparents and carers. Anyone who has a connection to PWS. That’s the only qualification you need to make a difference to parents, children and adults coping with PWS.
Our volunteers get a real sense of achievement from:
- Welcoming new families to events and meetings
- Seeing families come together and gain support from sharing their own experiences
- Nurturing relationships and providing support and reassurance
Research shows that volunteering offers benefits such as:
- Improving health and well-being
- Developing self-confidence
- Supporting personal development.
- Supporting employment/training opportunities
To find out more about volunteering, please call 01332 365676 or email Ruth at
rconsterdine@pwsa.co.uk.
