In August, what happened was....

All around the world there are families needing our support.  Emails come in continuously - not always with cries for help, but quite often, so I'm going to outline some of the issues we helped with internationally in August.   For instance...

Qatar: A mother with an 11 year old son from Doha contacted us asking for support in maintaining her son’s dietary needs and physical activities.  While her son had been diagnosed at birth, he was unable to have GHT due to a sleep apnoea problem. This mother was asking for information about any centres run specifically for PWS where her son could get some help.  Our office in Italy sent all the relevant packets of information, both in Arabic and in English, including DVDs.  Of course, even though we are a big family of many countries (98 to date), there is not always immediate help at hand, so it was with some hope that we contacted Germany and asked our professionals there at the Witteskindhof centre  whether they might be able to help.

You may remember reading our blog  which told of a young woman with PWS from Macedonia who came to stay for a few weeks at Witteskindhof centre with her family.  While she was able to integrate socially and make new friends, at the same time both she and her family learned more about PWS and what kind of support is needed around this syndrome.

Not long after our Qatar request, we were rewarded with an answer outlining the conditions for acceptance.  We have passed this onto our contact in Doha and are hopeful that an excellent outcome will be reached.

Philippines: Not long after this, our CE, Giorgio Fornasier, had a visit from our parent delegate in the Philippines who has been a very active member in our large group.  Currently she is working for a Dutch company and travelling to the Netherlands every few months.  She was immediately put in contact with Dr Leopold Curfs there, and so another strong strand of information, support and help has been forged.

China: An enquiry from China – and, wonderfully, we have Chinese translated information that was able to be posted out immediately, and our parent contact in China alerted to this new family.

Mexico:  In Mexico, a very successful weekend workshop on PWS was held with topics covering paediatrics, growth hormone, behaviour and so on.  Our Scientific Consultant, Dr Moris Angulo from the USA, was one of their major speakers.  Mexico is making very good progress, especially with such expert help!

Peru:  It was sad to receive an email from Peru from a mother who had lost her 3 year old daughter who had PWS, and who was scared to become pregnant again, not knowing the risks involved of carrying a second child with PWS.  We have good Spanish-speaking medical contacts who were able to talk to this mother in her own language.

Chile: We welcomed a new Parent Delegate from Chile, Amarlia Barlart, who speaks excellent English as well, and who is eager to help families in her country.

New Zealand: We welcomed a new Caregiver Delegate from New Zealand, Julie-Anne Quinney and look forward to meeting her at the 8^th International PWS Conference next year.

Our Professional Providers Board:  Talking about our professional caregivers, they have e-office hours where you can contact them and talk through any issues or problems, or just talk about PWS with another country – it’s a great resource and we hope to build up quite a talk-fest.  You can find information on our website under the “Carers” tab.  During their last month's office hours, they spoke with caregivers from USA and Spain.  You don't even have to have a problem to talk!  They just love to know you're 'out there'!

Fundraising:  Finally – we are still struggling to revive our grant from Pfizer which allows us to do our daily work.  We know it is difficult to find funding for everyone all around the world, but we hope we will never be in a position to close our doors!  You can help, of course – our “Light a Candle” project is still alive and well, and we received a donation just the other day; our “e-gallery” project where you can buy wonderful and unusual art-work for a small donation, is still waiting for you!

Membership dues: And, if we receive all our membership dues, this will also help us in our work.  Outstanding dues still remain from:

Greece

Poland

Venezuela

Don’t forget, you need to be a fully subscribed member country in order to have a vote at the General Assembly next year where we look forward to another wonderful conference, full of more wonderful people!  (Well, we are, aren't we?)

For those outside "Prader-Willi Land"

After posting last week about our new project, FamCare, I read a post in one of the PWS listservs which I want to share with you.  It describes a parent's feeling of utter joy in finding a place for their adult son.  I know - we all do - that not everyone has this opportunity, and this is why IPWSO has developed its FamCare support; to help families along this rocky road, hopefully to a productive and happy ending.


"After four very difficult years, with many, many ups and downs, our son is finally part of a community where he is just like everyone else, and where the staff "gets" the strengths and needs of folks with PWS.   He has joined some great young gentlemen  and he is over the moon with joy. The young men have graciously welcomed him, and are helping him settle in. Finally, I am feeling the relief that my son will be able to live a healthy, happy and productive life. I feel like we won the lottery!


I wanted to share this with you all, as you are the only folks who will truly understand our joy after so much struggle. No one understands the day to day life of living with PWS like us families. While we love our children and they bring us great joy, they present so many unusual issues and cause incredible stress, that those outside of "Prader-Willi Land" will never understand. For the first time in a long time, I am at peace and can rest."

IPWSO's new FamCare (Family Care) project

IPWSO is exited to tell you about a new venture it is undertaking.  Called "FamCare", it is designed to find ways of supporting families around the world who are caring for their adult child with PWS at home.  We know that there are many of you doing this and looking for answers to questions, or just for someone else to say, "we know what you're going through".

Georgina Loughnan, from Sydney, Australia, who is an IPWSO Board member, is heading up this new project.  She has worked over the past 21 years as a clinician with adults and adolescents with PWS.  She has seen families continually work hard to provide and access the best care possible for their adult children with PWS, and recognises the difficulty that this can pose.  She says:

"As children develop into adolescents and adults, families continue to struggle to find the most appropriate setting for them.  It is these areas that need to be addressed as soon as possible for the adult child with PWS, to ensure that every environment they spent time in is as appropriate to the needs of someone with PWS as possible.

"Finding a school that will step up to the challenges demanded by someone with PWS is a difficult task.  The school years can be most rewarding and above all, secure for a child with PWS if the service providers fully understand the syndrome and the specific needs it brings.  On leaving school, the adult child with PWS faces a whole new lifestyle, one that inevitably offers many opportunities for great independence and high hopes.  However, people with PWS can never survive well with independence, especially in travel or situations that provide even the hint of access to food.

"All environments into which adults with PWS venture need to be appropriately managed to prevent the development of overweight and difficult behaviour.  Where an adult child with PWS remains living at home with the family, it will always be up to the family members and any other people supporting the adult with PWS to make provisions for the best possible environment."

FamCare's aim is to support families who need help, inspiration, new ideas, and just plain common-sense answers to the every-day problems that arise in caring for and managing the situations that arise when living with an adult with PWS at home. 

Watch this space... there will be more!

International Caregivers Conference

Very soon, in May this year from 7th - 9th, the third International Caregivers Conference will be held in Germany.  This is held in partnership with two residential providers in Germany: Regens-Wagner Absberg, and the Diakonische Stiftung Wittekindshof.

Pam Eisen, opening the first conference in Herne, Germany

This conference is specifically for professional caregivers and attended by countries from around the world.  This was the brainchild of Pam Eisen, IPWSO's past President, and as such has provided the world with the new International Best Practice Guidelines for Residential Care for Prader-Willi Syndrome.  (Copies of this are available here from IPWSO.)    All participants attend workshops of their choice and contribute their own knowledge, ideas, concepts, and country's models of care, which then get translated into draft guidelines.  Each workshop has a facilitator, a scribe, and a translator.  At the end of each day, time is taken to write up all the notes which are tacked up on large boards and presented at the "market place" where everyone gathers to hear what has taken place.  These draft guidelines are then thoroughly discussed and tested by the PPCB before becoming recommended as international best practices.  In effect, they are contributed by each and every caregiver from all corners of the world - what more could you ask for!

Topics included range from the understanding of the syndrome and its characteristics, nutrition, weight, exercise, psychological make-up, psychiatric care, communication, social skills and empathy, what makes  a good residential home run well, the transition into and out from the education system, to, more recently a topic for this year's meeting, how to develop a PWS curricula for staff.


Because these guidelines are something IPWSO wants to be able to endorse internationally, there are, understandably, very different cultures contributing some very different ideas and it is always interesting and exciting to learn how these cultures can be absorbed into our international network of care.  And, not to be forgotten, are families supporting adult children at home.  Their needs are just as great as those in residential homes and must be acknowledged and woven into the whole concept of care.

The 1st and 2nd conferences were held here in Herne, Germany

Care must  be holistic and inclusive.  It needs to acknowledge that home life has a series of transitions to overcome - from home into school, from school into the workforce, and also into the community.   IPWSO and the PPCB strive to support all our families, our residential providers, schools and educationalists, as well as medical professionals throughout the world.

One of the workshops' diagram of "Anatomy of a crisis"

This is not a small task, and the PPCB is completely dedicated to helping provide professional support and help through its combined international knowledge.  This year's conference is in Wildbad Kreuth, about an hour's drive from Munich.  Speakers are from all corners of the world, there are two days of workshops (and 'work' is the operative word!), and the best opportunity professional caregivers will ever have to work with some of the world's experts in this specialised topic.

If you are a professional caregiver and would like to attend the conference, please go here for registration information.   Likewise, if you are a parent and have a son or daughter in residential care and think it would be beneficial for someone to attend the conference, please let them know.

As usual, we have great expectations from this unique gathering, all in the name of Prader-Willi Syndrome!

Onwards and upwards!!