Starting a PWS Organisation
Organising a new PWS association can seem daunting, but there is great strength in a group of parents and it is a vital tool to getting things done. You can create a strong support group with professionals and parents together; you can educate schools, other families, workplaces, other medical groups and put forward your views at the highest political level. Associations all around the world have done this and achieved great things for the PWS population.
So how do you go about doing this?
If you don’t know anyone else in your area with a child with PWS, ask your doctor if they know of anyone, and let them connect you. But, let’s suppose you already know a few other families where there is a child or adult with PWS. So, the first thing is to get together and talk. Talk about what you want, what you need, talk about your ‘wish list’, talk about things that work, things that don’t work, talk about people you need in your Association (physiotherapists, dieticians, medics, teachers). Make lots of lists!
If you are just a small group to start with, decide from the list what is most important to you and tackle that first.
Step One - Talk!
You want to collect up as many families in your country or region as you can. How do you do this?
Tell your story – One of the best ways is to invite a journalist to meet you and write your stories. Tell your stories honestly – the bad with the good – make sure the magazine you choose to tell your stories to is one that has a large circulation; one that also sits in doctors’ waiting rooms. Make sure you have an email contact address.
Write a blog, share your story on Facebook (remembering where and who might be reading it, and being careful what you share)
Step Two - List tasks
Organise your parents and give them tasks to do. You may choose to put this on a more formal basis (Chairperson, Secretary, Administrator etc) if you have a large group. There are many tasks to begin with.
Make a list – this might include:
- A person responsible for internet searches – information in your own language (contact IPWSO office@ipwso.org for further help with translations).
- A person responsible for answering all the emails you will receive from the magazine article.
- A person responsible for making a mailing list – and keeping it updated.
- A person responsible for linking all the new members into a Facebook group, or a WhatsApp group, or just an email group.
- A person responsible for designing a questionnaire for all new members:
- How old is your child?
- Do you have a son or daughter?
- Do you have a medical diagnosis for your son/daughter, and if so, do you know what subtype they have (deletion, maternal disomy, or mosaic imprinting)
- What help do you already receive?
- What help do you want?
- Is your son/daughter at school?
- What help do you need?
- Is your family supportive?
- What do you need to help them understand?
- Is your son/daughter in residential care, or at home?
- Does your son/daughter have a job?
- Are you willing to be put in contact with other families?
Include any questions that might help your Association understand the needs of its members and thus, the direction it might take.
Step Three - Collate Information
Make one of your members responsible for collating all the information you have received. Make sure it is kept confidential and check your own country’s Privacy Laws to make sure you are doing it right.
From this list you can now group your parents into their child’s age-appropriate group. This will make it easier to find appropriate information to distribute.
You may decide to put out a newsletter to everyone on your mailing list. You can do this easily with apps such as Mailchimp which will also give you detailed feedback on who has opened and read your newsletter.
Step Four - Facebook and website
Make one of your members responsible for your new Facebook page, and organise a chat page. This will build strength and confidence among your members and, if you are a large country, will bring people together. If you have someone who can design a website, then make a start on this.
Step Five - Fundraise
If you can – start to fundraise. This is often the most difficult part of running an association. Get your group to contribute ideas; if you have a large membership, form a fundraising subcommittee. Don’t forget, fundraising is not just holding an event, it can also be…
- Going to talk to your Member of Parliament and making them aware of you. Asking for help, ask for funding and specify what it is needed for.
- Find out about the charities and grant bodies in your area; approach them individually, tell them what you need and how much it will cost.
- Approach fundraising groups such as Rotary, Lions, Lionesses. If they want, you can talk to them; tell them your stories, make presentations.
- Ask your members and those on your mailing list to make a donation for a specific cause (like supporting someone to attend an overseas conference).
Step Six - Conferences
Start going to conferences – this is a major focus for your fundraising. You will be greatly surprised by the support you will receive at your first PWS conference! Make contacts, network, stand up and talk! Be brave!
Step Seven - Membership
Join up with other PWS Associations – form links on your website. Get involved with IPWSO. You are starting to become an important part of your community – join in, make yourself known!
Step Eight - Registration
Look at what it means to register your Association, what the costs are, what the benefits are (the major benefit is for fundraising). Become a full member of IPWSO!
Step Nine - Develop Policies and Procedures
With your registration will come a need to develop your own policies and procedures. You will need to decide if your membership has a fee, and whether that fee applies across the board, or will be different for families or professionals.
Step Ten - You've done it!
You may even decide to host your own conferences – or one day host an international PWS conference. It can be done! Advertise your meetings, fundraise for international speakers, get on a medical email list, make as many contacts as you can. Keep going!
Support for Conferences and Workshops
We have supported many events over the years in a variety of ways, from providing speakers and advice to providing financial support.
Share your story
Help us make a difference and raise awareness across the world in areas where there may be limited information and knowledge about PWS.
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International Community
IPWSO was established so that PWS associations, families, clinicians and caregivers around the world could exchange information and support and have a united global voice under one umbrella.
Information for
Families
Find useful guides, research and information to help families manage PWS.
Information for Medical Professionals
The latest medical and scientific research and information, plus guides into common medical issues affecting people with PWS.
Information for
Professional Caregivers
Sharing international knowledge among professional service providers throughout the world.
What is PWS?
Prader-Willi syndrome is a complex genetic condition. Various studies have shown that between 1 in 15,000 to 25,000 children are born with Prader-Willi syndrome and it affects all races and both sexes equally.
Free Diagnosis
If you suspect your patient has Prader-Willi syndrome, based on the clinical signs and symptoms, but are unable to access testing in your country, then you may be able to access free testing.
Find support in my country
We have contacts in many countries and regions around the world.