sweet emilia a real fighter! · bern walker, gerry ardesi, sarah rees, melissa baker and executive...

PWSAV 2015 November Newsletter - 1 -

By Bern Walker This is our beautiful girl Emilia. Emilia will be five in five weeks, I just can’t believe that. What a journey it has been but more importantly what achievements she has made. There was a time – that we are all too familiar with – when we just didn’t know what to expect of the coming years. We still don’t know what her future will hold but we have come to accept that is part of this deal that is Prader-Willi Syndrome. We do know that without doubt she will continue to amaze us. We decided very early on to try and think positively and give her every possibility to be the best she can be. She has taken life by the horns and given it all she has. Don’t get me wrong, life has not been without it’s challenges but like all of our kids, she is a FIGHTER. It is so very humbling to see your child tackle everyday things that most people take for granted and work and work and work to achieve them…all without complaining. From very early on she was perceptive about her challenges and worked very hard to try and overcome them. One by one she has overcome each of the challenges that she has been presented with. Speech has always been one of her biggest challenge and continues to be. I am reminded of just how much of a challenge it has been when her two year old brother often speaks with greater clarity than Emilia. At the same age Emilia understood everything but could not express herself. This caused great frustration, which often manifested in tantrums, biting and pinching. She has persisted and is experiencing the payoff now that her peers understand her and she can participate in their play.

As a result she has blossomed this year in four year old kinder. She’s made friends and has assimilated well. She still can’t writeher name or understand the same level of language concepts as her peers but she is loving it and doing so well. So instead of doing another year of four year old kinder she is going in to a Transition Prep program at a fantastic local primary school, which is pretty exciting. By far Emilia’s biggest challenge however has been anxiety. She developed anxiety at three and it is something we manage day to day. We have great days and weeks and those that are not so great. It affects our ability to go out to events at night but we manage. We have had to work hard to learn where her head is at when anxious and to help her to find stability and comfort when she is feeling anything but. continued page 2…

Sweet Emilia a real FIGHTER! Up coming events

Christmas Party 29th November 2015 Time out camp 1st-4th April 2016 Go Orange PWS awareness month May 2016

Save the date Time out camp 1st-4th April 2016


We try and anticipate potential problems before they arise and implement strategies to manage them. She has learned to self-regulate quite a lot and we need to support her when she can and when she can’t. This is likely to be one of our greatest ongoing challenges but we will continue to work together to help each other on our journey.

So here we are, looking forward to next year where Emilia will be attending full time school! We are so proud of her and constantly humbled at how amazing she is and how she rises to every challenge and then steps it up even further. We look forward to seeing her bloom even more next year.

Sweet Emilia a real FIGHTER! (cont.)

Welcome to the November edition of our newsletter. Firstly, thank you to all associated with the production of our newsletter including article contributors. A fantastic document that conveys our purpose of advocacy in a professional and user friendly manner whilst being extremely educational. Once again, our newsletter is jam packed with information and is a credit to all concerned. Well done! Due to business and personal commitments I am stepping down as President of the Victorian Association. It has been a difficult decision to step down and was not made lightly. I have thoroughly enjoyed my three years on the committee beginning as an ordinary member, then treasurer, and finally as President for the last 18 months. A new

president will be appointed in due course. The Association is in a strong position both operationally and financially and I commend the tireless efforts of the committee during my tenure. Due to these efforts and those of our Executive Officer, our organisation is in good hands and will continue working toward a better future for our members and their families. A special mention to our Executive Officer, Brett O’Farrell, who has assisted me in my role as President including being a much needed sounding board on many occasions. Thanks mate. Our current board consists of James O'Brien, Kate de Josselin, Tessa Maguire, Bern Walker, Gerry Ardesi, Sarah Rees, Melissa Baker and Executive Officer Brett O’Farrell.

President’s message

Tim Perceval PWSA VIC President

A huge thank you to the following retiring committee members. The organisation would not be where it is today without their enormous contributions: Narelle Smith Narelle has been on the committee for 4 years as an Ordinary member helping out with events. Narelle has also been editor of our Newsletter for the past year.

Mark Cross Mark has been on the committee for 2 years as an Ordinary member. Mark has been involved in the Adult sub-committee and Training programs. New Melissa Baker – Ordinary Member. Melissa is mum of Dylan and Zac.

Thank you’s and welcome


By Kate De Josselin Very soon you will receive notification by letter or email from your State PWSA asking you to vote for the new Constitution for PWSAA. Every incorporated association must have rules that are lodged with Consumer Affairs in the State in which they are registered. PWSAA are registered in Victoria. Changes to the Law in 2012 requires associations to include a statement of purpose as a part of its rules and to address every item listed in Schedule 1 of the Associations Incorporated Reform Act 2012 www.consumer.vic.gov.au The PWSAA rules have not been reviewed since 2002 so the time is right for an update. You will receive a notice of the Special Resolution to adopt the new Constitution because all financial members of the Victorian, New South Wales and Queensland Associations are automatically members of the National Association. You therefore have the right to attend the Meeting and to vote on the Special Resolution. The Special Resolution is: That the Prader-Willi Syndrome Association of Australia Incorporated adopt a new Constitution as circulated and tabled. Moved James O’Brien. Seconded Kate De Josselin. The following link will take you to the new PWSAA Constitution, together with a list of the changes PWSAA has made to the Model Rules. The link is www.pws.org.au/constitution2015.html

To exercise your vote you can either:

1. Attend the Annual General Meeting of PWSAA on 19th November at 8.30pm EST by Skype and vote in person. Should you wish to attend the Meeting please email Anne Sakaris (Secretary) [email protected] with your Skype address.

2. Respond to Anne Sakaris with a Yes

or No vote, indicating whether you are for or against the Special Resolution. You can do this by post to the address provided below.

3. Nominate James O'Brien, President

PWSA Australia, as your Proxy to cast your vote as he sees fit. There is a LINK to a proxy form which you can complete, scan and email or post to Anne Sakaris.

Note: to pass the Special Resolution and adopt the new Constitution will require a majority of 75% of the votes cast by members. Please cast your vote by November 19th 2015. Address for postal votes: Secretary PWSAA 9 Clovelly Drive GEILSTON BAY Tasmanian 7015

Vote for PWSAA constitution

PWSAA News Update

If you have any questions feel free to email me at [email protected] or phone on 0451 797 284


PWSA VIC “Training without Borders’’

RACV grant improves PWSA Vic training

Paula Piccinini, Chairman, RACV Community Foundation with James O'Brien and Kate De Josselin.

Shane Austin, Manager, RACV Community Foundation and Kate De Josselin.

By Kate De Josselin James O’Brien and I were very pleased to attend the presentation of the RACV Foundation’s 2015 grants at the RACV City Club on Friday the 16th October. There we were presented with the grant for $10,000 on behalf of the Prader-Willi Syndrome Association of Victoria . This grant will be used to develop and implement the PWSA VIC “Training without Borders Program”. Thanks to Brett O'Farrell for the work put into the application for this Grant. One of the long term goals of the Prader-Willi Syndrome Association of Victoria is to provide access to training about Prader-Willi Syndrome no matter where you live. At present I respond to training requests from PWSA VIC members from Victoria’s metropolitan and Regional areas as well as South Australia, Tasmania and Southern NSW. In addition I have had inquiries for training and information from as far afield as Broome, and Brisbane. The phone links and emails provide the initial support and is an essential part of the support we provide to individuals and their

carers living with PWS. Often the care providers will request on- site training sessions. But when the request comes from areas out of the metropolitan areas the cost of travel often becomes an issue. This Grant will be able to assist with some of the travel costs when on-site training is requested from areas out of the metropolitan area. We are also developing partnerships to use Video Conferencing as a way to deliver training for the carers who are looking after individuals living with PWS in remote areas. We are also finding that we will have to further develop our training material to allow for differences between states in regards to medical services, education systems & disability support services. PWSA VIC are also planning to use the grant monies to develop some online tools and applications to further increase the range of choices our members have to access information about PWS .


By Kathlene Jones We have been busily working away since our conference in April so I’m excited to share our progress with you. PWRFA at a glance

PWRFA stands for hope for a bright future for our loved ones with PWS

We have a passionate, talented and highly respected Board in place to guide our efforts, and six leading scientists to advise us

Key projects have been identified for funding which will make a real difference to the lives of people with PWS.

A project to ease constipation in children with PWS is planned to be the first to start and offers a chance to solve a widespread problem. If you’re interested in being involved, please contact us

We need your help – we’re looking for ideas of what you’d like to see, your stories of how PWS has touched your life, and volunteers to help us keep building momentum

Our team in place Firstly, we have a really driven and passionate Board in place who are working hard to set us up so we can achieve our main goals – delivering treatments and improved outcomes for people with PWS . Professor Robert Williamson AO is a world-recognised researcher of Medical Genetics and a previous Director of the Murdoch Children’s Research Institute. Dr Dan Grant heads up External R&D Innovation for Pfizer. Amy Brennan is a highly talented barrister who has a sister with cerebral palsy and understands the challenges and stresses on families living with disability. Bern Walker and I are both parents of young girls with PWS. I’m thrilled to announce that Dr Ian Watt

AO will be Chair of the Foundation from January 2016. Dr Watt recently retired as Secretary of the Department of Prime Minister and Cabinet and was instrumental in the establishment of the NDIS. This is a real coup for our Foundation and for the cause of PWS in Australia more broadly. Our Scientific Advisory Council gives us expertise across the leading research techniques and areas which relate to PWS. It includes Assoc Professor Jeff Craig (Epigeneticist at Murdoch Children’s Research Institute), Professor Anthony Hannan (Behavioural Neuroscience, Florey Institute of Neuroscience and Mental Health), Dr Theresa Strong (Research Director FPWR), Professor Herbert Herzog (Neuroscience, Garvan Institute of Medical Research) and Dr Sara Howden (Postdoctoral Fellow, Murdoch Children’s Research Institute). We will continue to engage other scientists with specific expertise as we continue to develop. I’m also thrilled to announce that Melanie Carew, Head of Corporate Affairs, Partnership and Education at the Cooperative Research Centre for Mental Health has volunteered her expertise to help drive our social media and communications effort. Amy Johnson, from PWSA NSW, has agreed to the role of Treasurer. Two more wonderful assets to our team. Our program of work is designed with two outcomes in mind:

1. Improvement in symptom management and outcomes (e.g. health, development, behavioural) for people with PWS in the short to medium term.

2. Development of the ideal treatment or therapy (e.g. one that targets the genes or expression of genes) in the longer term.

Prader-Willi Research Foundation Australia – October Update

…a passionate, talented and highly respected Board to deliver much needed research for PWS community


The set of initiatives that we plan to pursue are outlined on the table below and are all focused on making a real difference to the lives of people with PWS. You can see that the fundraising goal is high and we are starting work on that front now. We have a project that are working to get started now – constipation management. Constipation is a common issue in PWS and a reason for many doctor and hospital presentations. Additionally this is a project

that we can get started with minimal cost. Dr Bridget Southwell (MCRI) is a leading expert in this area who has worked extensively with children with chronic constipation and slow transit. She has developed a laxative protocol and skin applied electrical stimulator that has had good results in resolving constipation. She is keen to work with families with PWS. Please contact me on [email protected] if you’d be willing to get involved.

Our program of work improves clinical care and progresses the ideal therapy – Initiatives will launch as funds available

Initiative What it is Rationale Budget (estimated)

Register • Investigate the establishment of national register for PWS

• Aligned with FPWR, existing PWS, Rare Voices

• Critical to research and clinical trials; makes PWS attractive to private and govt sector funding

• $50,000 • Drive participation

Clinical fellow • Provide a stipend for MD PhD • PhD project to include

patients and laboratory • Genome-epigenome-

phenotype mapping • Diet and lifestyle;

attachment • Identify clinical trials to

pursue

• Improve resources for clinics • Develop PWS expert, preferably

career-long • Close gaps in outcomes between

Australia and US • Inform research priorities • Build towards world-leading clinic

• $500,000 over 3 years

Induced Pluripotent Stem

Cells

• Provide IPS cells to researchers • Make PWS visible and studied by people who want iPS cells for many other reasons

• All PWS iPS cell researchers would use the same cell line and able to share data.

• $50,000

Epigenetic engineering

• Cutting edge technology to activate the silenced maternal genes

• Ideal therapy—addresses the root cause

• Applies to all people with PWS

• TBD

PhD Top-Up • Provide a small additional stipend to existing PhD candidates to apply their work to PWS

• $10,000 per student, 2 students

• Leverage existing work with promise for PWS

• Relatively low cost

• $60,000 over 3 years

In collaboration with PWSA Australia

Draft


We want to fund a clinician to complete their PhD in PWS. This person will lead specific research projects and provide another clinician available to people with PWS. They will dedicate their time solely to PWS and will be available for anyone in Australia to make an appointment. We are modelling this on the Freiderich's Ataxia clinic at the Monash Hospital in Melbourne. It has been deemed the best in the world. I also believe that the reason progress happens in the US is that there are outstanding clinicians, such as Dr Jennifer Miller, who are deep experts in PWS and lead clinical research. We want the same level of research and care for Australian families. A register is critical to the work of PWRFA so we are working with PWS Association of Australia to investigate the establishment of a national PWS register. We are talking with FPWR about working together on the register front. We also want to work with the existing registries in Australia. Our preference is not to duplicate work, cost or burden on families. From our perspective, the more people and history we have on the register, the more likely it is that pharmaceutical companies will run clinical trials of drugs or therapies for PWS. The remaining projects have been identified as promising areas of research by the scientists who are advising us. For now, we have shortlisted them as the most promising areas and will stress-test these further before fully committing to them. I’ve included them so that you have an idea of the types of projects we are looking for. The key things are to make sure we are working on the most promising science and to ensure there is a reasonable pathway for these to be developed and available to people with PWS. Our website is currently under construction and will go live at www.praderwilli.org.au in late October. Our facebook page is live

and at www.facebook.com/pwrfa Get involved to make a difference Volunteer your time and expertise We are currently looking for people to get involved in fundraising and administration. If you can help on either front please contact us on [email protected]. We are also looking for volunteers to provide ideas on what you’d like to know from the scientists working on PWS. If you have other skills to contribute, please contact me! Fundraise Families and friends are an important contribution to fundraising. Amanda Johnston’s story of how South Gippsland farmers mobilized to support PWS is an amazing example of community. We will be setting up a fundraising program and in the meantime welcome your creativity and thoughts. We will also be seeking funds from philanthropists. Share your stories Our website and communications materials need your stories to bring to life the human experience of living with PWS. If you are willing to share you story, please get in touch. Rest assured we will treat every one with respect, care and dignity. We have been working hard to make sure the Foundation is quickly up and running. It’s now time to start getting runs on the board. Your support makes all the difference and is greatly appreciated. Help us work on hope for the future.


Family Day and AGM By Sarah Rees This year we needed to look for a new venue to hold our Family day/AGM due to renovations at last year’s venue. We were very grateful that St. Kilda Primary School allowed us to use their facilities. We were so lucky to have such a beautifully sunny day to enjoy, while we sat on the grass eating our picnic lunch and relaxing. As always the family day is a great opportunity to catch up with friends, both adults and children. A friendly pirate arrived to share our day and made balloon swords, organised a sack race and told tall tales. He even hada bounce on the jumping castle! The animal farm was also a hit and this year they even brought some gorgeous puppies along. We have some beautiful photos of the children (and some adults) snuggling with the adorable baby animals. A big thank you goes out to the many volunteers who gave their time accompanying children, painting faces and helping with crafts. Volunteers are invaluable in giving parents peace of mind while attending the presentations inside the building. We had presentations on the following topics: Ross Wright gave a rundown of the

PWS Conference held in Melbourne earlier this years and shared what he had taken away from the event.

Bern Walker made a presentation on Nutrition and the current guidelines and advice given by Dr Miller and Melanie Silverman in the US, especially in relation to gut health.

Kevin Stone from Valid gave a very interesting talk about advocacy for adults. He discussed his role in fighting for disability rights including NDIS and other Government bodies. He also covered the specific difficulties

individuals face in a mixed disability home where locking up food is seen as against the rights of other housemates. Finally how we need to look at how we encourage our children to be their own person and our changing roles as they progress through life.

Neil Gumley, the house supervisor of the Healthy Living DHS house was accompanied by the mothers of two residents, Faye Verocci and Linzi West. There are 4 young men with PWS in this home and by all accounts it is operating extremely well. Anyone present in the house, including carers and visitors eat the same healthy and appealing meals. Residents have a key to the door and their own rooms and are given the freedom to go for a walk and have a coffee at the local café. They are given enough money for this purchase and must return with a receipt. They visit a farm during the week and help with gardening and other chores. Neil says that although it is working extremely well, conflicts arise and he is there to assist with sorting things out and also any other behavioural outbursts. Both Mums reported that their sons are thriving, as are the other members of the family who can relax and enjoy a more typical family life without so many limitations.


James O’Brien is the President of the PWSA of Australia, a Board member of the PWSA Vic and is the Founding Director and CEO of the Prader-Willi Better Living Foundation. James discussed the future directions of the Australian Assoc. and the current progress of the Better Living Foundation. Keep up the good work James.

Bern Walker and Kathleen Jones made a joint presentation, with Kathlene Skyping, about the progress of the Prader-Willi Research Foundation of Australia. Kathlene set up the Foundation and has been unbelievably successful in attracting top research scientists to begin researching Prader-Willi in Australia. Bern who is a Board member of the Foundation discussed some of the new directions for research is heading and current research that may apply to both PWS and the larger community.

The PWSA Vic Board have been gathering feedback from our members in order to develop and produce relevant information at each life stage in a timely manner. The four groups cover Pre-school, Primary, Secondary school aged children and adulthood. We broke into groups to have discussions and collect more feedback for this project.

The Sally Smith Award is presented each year to an individual who has contributed to the PWS community. The award was to be presented to Dr. Margaret Rowell but she was unfortunately unable to attend due to a family crisis. Helen Anderson gave us an outline of the many things Margaret has done to support our community including fighting to start the clinics at RCH. There is so much I was unaware of and I feel she is a

very worthy recipient of this award. The presentation will now be made at the pre-school clinic on November 6th.

All in all it was a very productive and enjoyable day. If you missed out try to join us next year.


Funding and Grants Update By Brett O'Farrell As an Association receiving no government funding, our ability to help our members is limited mainly by our ability to fund necessary services. While we all have some big ideas about what we could do to make the lives of our children just that little bit easier, unfortunately without funding many of these ideas remain unachievable in the short term. Knowing this, over the last six months PWSA’s income strategy has been a big focus with the Board considering new fundraising initiatives while also prioritising applications for grants and sponsorship. We’re pleased to report that this strategy has been a success and we’ve secured a number of grants to directly fund our support services, specifically in the area of our Training Program . We’d like to take this opportunity to thank three organisations who have granted PWSA funds in recent months; The Endowment Challenge Fund (founded by the Endeavour Foundation), the William Buckland Foundation and the RACV Foundation. All three Foundations generously grant funds to not-for-profit organisations in an effort to reduce the

isolation of families and individuals affected by disability and disadvantage, and PWSA VIC has been selected to benefit during 2015. Because of their generous support PWSA VIC will be able to significantly improve our Training Program offering greater advice, support and opportunities for our families and children, whilst also improving education opportunities for the broader community. Again we recognise these foundations for their contribution and thank them for helping us to reach our goals in 2015 and beyond. While we’ve been successful with the above grants, we have and will continue to apply for relevant opportunities as they arise throughout the year. We will also notify families of any relevant grants that may arise welcoming applications from individuals and families. Likewise, we encourage our Members to get in touch if they become aware of any potential funding opportunities for PWSA (please email Brett at [email protected]). Every single dollar goes to not only improving the quality of life of our children, but also to help lighten the load for any families who are newly diagnosed into the future.

Three Foundations generously grant funds to not-for-profit organisations in an effort to reduce the isolation of families and individuals affected by disability and disadvantage.

Looking ahead…. Christmas Party at Scienceworks 29th November 2015 A really fun family day to do as much or as little as you please. BYO picnic lunch, blanket/chairs, sunscreen or an umbrella! Of course the day wouldn’t be complete without Santa and he has promised to drop in. He will have presents for every child and young adult. Hope to see you all there. Time out camp Fri 1st to Mon 4th April 2016 (middle weekend of the school holidays) Camp is open to all members and we have a great mix of age groups both children and adults. Siblings are welcome too. We ‘camp’ in cabins, mix in a large lounge area and enjoy a PWS friendly menu. Whether its flying fox or Jigsaw puzzles there are always activities and lots of fun! Please consider joining us next year. Go Orange PWS awareness month May 2016 Go orange is growing significantly each year. It is a simple effective way to help educate others about PWS. You get choose how involved you wish to be and how you would like to participate. It’s never too early to start planning, so start thinking about what you might do for Go Orange 2016.


Together we are “Building Global Community” to eliminate the challenges of Prader-Willi Syndrome. This theme symbolizes the importance of bringing all members of the PWS community together to unite under one global mission. The International Prader-Willi Syndrome Organization and FPWR Canada are proud to announce that the Ninth IPWSO Conference will take place in Toronto, Ontario Canada, July 20 – 24, 2016 at the beautiful Sheraton Centre Toronto located in heart of downtown Toronto. This Conference will enable parents, caregivers, scientists and professionals to join together to share expertise and collaborate best practices in order to improve the quality of life of all individuals with Prader-Willi Syndrome. Organizers expect more than 600 delegates from around the world and our Canadian culture will embrace all nationalities and provide a rich and inclusive environment. There will be four key program streams: Scientific (July 20-22), Caregivers, People Living with PWS, and Parents (July 22-24). The Scientific Program Call for Abstracts will be announced through Co-Chairs, Dr. Theresa Strong, Dr. Rachel Wevrick and Dr. Tony Holland. “Meeting other families in the UK at the 8th IPWSO Conference was an incredible experience. Our community is made up of brilliant scientific minds, thoughtful and passionate families and caregivers and I am thrilled to be part of the global PWS Community. I know if we all join forces and continue to build global community, we will eliminate the challenges our loved ones face” stated Tanya Johnson, Mother to a 10 year boy with PWS, Chair and Host, 2016 IPWSO Conference. “This conference will provide scientific expertise, valuable resources and will cover topics important to the families and people who have PWS lead productive, independent lives.” Mark the dates on your calendar and start making plans to attend. Our online registration form and additional Conference details will be released in 2015. www.fpwr.ca/news-events/events/ipwso-conference/


Diet and Nutrition By Bern Walker In 2013 Dr Jennifer Miller, an endocrinologist and clinician from the U.S and a team of colleagues released the results on research they conducted on a revised diet for a group of children with PWS. Research Background

• Sixty-three children, aged 2–10 years, with genetically proven PWS participated in the study.

• These children had measurements of body composition and resting energy expenditure (REE), as well as a 3-day diet history analysis both before and after intervention.

• The children were seen annually before the age of 4 years, and every other year if they were >4 years of age. The children were followed for a minimum of 5 years and a maximum of 7 years. The study was conducted at the University of Florida Clinical Research Center.

With the aim of trying to prevent weight gain prior to the onset of increased appetite, to reduce weight for those that had already gained and to keep all subjects at a reduced weight thereafter, the researchers recommended a reduced energy diet consisting of approximately the following macronutrient breakdown:

• 30% fat, • 45% carbohydrates (complex

carbohydrates) and • 25% protein • with at least 20 g of fibre per day.

It is also important to note that individuals with PWS have a higher reward mechanism for high energy foods. This means high energy foods such as carbohydrates provide an even greater ‘feel good’ feeling in the brain than individuals without PWS.

Research Outcomes • Thirty-three families adhered to the

dietary recommendations for both energy intake and macronutrient distribution.

• Those 33 children had lower body fat (19.8% versus 41.9%) and weight management (body mass index SD score 0.3 versus 2.23) than those whose parents followed the energy intake recommendations but did not alter the macronutrient composition of the diet.

• Those who followed the recommendations also had a lower respiratory quotient (0.84 versus 0.95; P = 0.002), suggesting they had become more efficient with their energy expenditure/utilizing their food intake.

Research Conclusions Dr Miller and her team’s recommendation for an energy-restricted diet with a well- balanced macronutrient composition and fibre intake improves both weight and body composition in children with PWS compared to a simple energy- restricted diet. This diet has now become more widely adopted across all ages.

US revised diet for children with PWS


How do you get 20gms of fibre? Stick to complex carbohydrates. Some examples are:

Wholegrains such as Oats, Buckwheat, Quinoa

Nuts – small handful eg: almonds Sunflower seeds Chia seeds Blueberries Raspberries Pears Broccoli Zucchini Spinach or other leafy greens

If baking, coconut flour is very high in fibre as well as a good source of protein. You only need to use a fraction of what you would normal use as it absorbs moisture very effectively. Once liquid is added you need to work quickly to get it in the oven. There are plenty of healthy recipes using coconut flour on Pinterest.com and I will give you one in the next newsletter! Some examples of good fats

Olive oil Avocado oil Peanut oil Avocadoes Most nuts Salmon

A detailed article on good fats and bad fats can be found at http://www.health.harvard.edu/staying-healthy/the-truth-about-fats-bad-and-good The dieticians at the Royal Children’s Hospital are working with us to adopt this diet and provide you with the advice needed. If you are unable to see the dieticians there or have to wait a while till your next appointment and want to get started sooner you can find an Accredited Practicing Dietician at http://daa.asn.au/for-the-public/find-an-apd/. You want a dietician that is passionate and willing to help and provide them with this information. If they want some guidance specific to PWS, Melanie Silverman renowned dietician who works with Dr Miller in the U.S has kindly offered any help needed if your dietician wants to contact her at [email protected] Important Note It is extremely important that advice is sought when changing the diet of your loved one with PWS. This is particularly crucial where there is constipation or blood sugar issues as altering the diet can change these too.

Note: Please do not attend the clinic without an

appointment.

To make appointments contact the clinic

coordinator Erin Alexander on 9345 4765

PWS Clinic Dates Pre-school clinics

Nov 6th 2015 Feb 5th 2016 May 6th 2016 Aug 5th 2016

School Aged clinics


Newborn clinics



Buckwheat Bars By Bern Walker Adapted from a recipe by Alexx Stuart (alexxstuart.com.au) Here’s a recipe for a nourishing snack that is also nut-free, egg-free and sugar-free. Most of these ingredients can be found at your local supermarket now in the health food section or a health food shop. If you like to shop online try somewhere like organicsonabudget.com.au or bulkwholefoods.com.au. ½ cup tapioca flour 2 heaped tablespoons coconut flour 2/3 cup buckwheat kernels (also known as buckinis) ½ cup pepitas (pumpkin seeds) ½ cup sunflower seeds 2 tablespoons of linseeds (or linseed meal/flaxmeal/golden flaxmeal) 1 & 1/3 cup dessicated coconut (try using one without preservatives like Safeway Macro brand) 2 tablespoons raw cacao ½ cup coconut oil (no need to melt it) ½ cup rice malt syrup 2 tablespoons chia seeds Additional 1 tablespoon chia seeds mixed with 3 tablespoons water (or one egg) Preheat oven to 175 degrees. Grease and line a baking tray with baking paper. Mix the 1 tblspn chia seeds with the water and allow to sit for a few minutes. Throw all ingredients (except buckwheat kernels) in a food processor. Blend until well combined (approx. 30 seconds – 1 minute). Add buckwheat kernels and pulse until mixed through. Press in to tray. Bake for approximately 18 minutes (up to 25 minutes depending on the size of the tray), until smelling really biscuity.

Remove from oven and place on rack. While still warm (within a couple of minutes of removing from the oven) score the shape of the bars almost to the bottom of the tray. I mark into thirds across and then 11-12 rows along the length of the tray to make approximately 36 bars. When nearly cooled cut all the way through to separate the bars. These freeze exceptionally well. I throw some in a snap lock bag in the freezer and keep some in a jar in the pantry where they will keep nicely for approximately 5 days. Packed with healthy fats and fibre it’s a great little snack paired with a serve of fruit of choice like berries.

A great little snack packed with healthy fats and fibre


About us

PSWA VIC Newsletter Editor - tba Production -Warren Maguire Send any articles to [email protected]

Join us on Facebook PWS Support for Aussies Prader-Willi Syndrome Assoc. of Victoria (PWSAV)

The Prader-Willi Syndrome Association of Victoria Inc. was set up in 1978 by parents of children affected by the syndrome and is totally run by volunteers. It has a long experience of providing help and information. Our membership focuses on Victoria, Tasmania and South Australia although anyone is welcome to join. Our members include parents and carers, family members, people with PWS, professionals and interested supporters.

To contact us: Prader-Willi Syndrome Association of Victoria PO Box 92 Kew 3101 Australia phone: 0451 797 284 overseas: 61 451 797 284 email: [email protected]

web: www.pws.asn.au

Make a donation The PWSA VIC welcome donations from individuals and the corporate sector. We are a registered charitable organisation withthe Australian Tax Office and all donations over $2 are tax deductible.

Thank you Narelle Thank you Narelle for your great contributions each quarter as PWSA VIC Newsletter Editor. You have lifted the standard and content across many editions. If you would like to assist with the Newsletter or have a story you would like to include please email us at [email protected]

sweet emilia a real fighter! · bern walker, gerry ardesi, sarah rees, melissa baker and executive...

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