Updates for our Brainwave Families Regarding the Coronavirus (COVID – 19)

Updated 27/04/2020

Together with our friends at Kids Disco Parties, we are excited to invite you to our very own Brainwave virtual disco via Zoom on Thursday, April 30 at 3pm.

This event is specifically tailored to our Brainwave families, offering a more relaxed disco, including less lighting and frequent and slower nonverbal cues for movement guidance.

We can’t wait to see you there! Registration is free but essential, and places are limited, so please register early to avoid disappointment. You can register via:
zoom.us/webinar/register/WN_FzYr2XFtRg2gIuZFLsLQ8A

This event is for Brainwave children and their families, if you aren’t registered with us, please register here: brainwave.org.au/brainwave-registration/

And don't forget to join our Brainwave Parents Connect Facebook Group to stay in the loop about all of our newest activities and special opportunities for families: facebook.com/groups/660953107780079/?source_id=112826588807298


Updated 7/4/2020

We know that getting fresh, good quality fruit and vegetables for your family right now may be hard, and that leaving home can be difficult. For Sydney, Melbourne and Brisbane families, our supporters at Fruit Box have developed a special home delivery pack of fruit, vegetables, and other pantry essentials.

Visit www.thefruitboxgroup.com.au/at-home to order and pay from $70 for a box of fresh fruit, vegetables, milk, bread, and juice delivered to your door - or place a larger order to suit your needs and budget.

We hope this initiative helps you at this busy time and our thanks go to The Fruit Box Group for supporting Brainwave families.


Updated 1/4/2020

Coping during the Coronavirus Crisis

In response to the coronavirus outbreak, many of us will experience pressures and anxiety that are new, and we may struggle to manage these feelings while still supporting those around us. If you feel the need for mental health support, we suggest contacting:

Association for Children with a Disability Support line: a free service for parents and families of children with any type of disability in Victoria.
https://www.acd.org.au/support-line/

Carers Australia CarerGateway: The Carer Gateway Counselling Service is a free service for carers.
https://counselling.carergateway.gov.au/s/

Lifeline – visit www.lifeline.org.au or call 13 11 14

Beyond Blue – visit https://www.beyondblue.org.au/ or call 1300 22 4636

Parentline - 13 22 89

We are all struggling right now. No doubt about it. If you feel the need for mental health support, please reach out.


Updated 23/3/2020

To keep people connected and strengthen our community during this challenging time, we are   launching the Brainwave Parents Connect Facebook Group. This private group offers a friendly and supportive online space for parents of children registered with Brainwave to come together to share their thoughts, feelings, and ideas. We can’t wait to get some great discussions going, and we’d love for you to join in!


Updated 16/03/2020

Much has been written in recent days and weeks regarding the impact of the Coronavirus (COVID – 19) and the situation is quickly evolving. During these uncertain times, we strongly suggest that all our families and carers stay up-to-date via official government sources including health.gov.au, and by following the Australian Department of Health on social media, along with other credible news sources. Brainwave will also provide updates most relevant to our families as available.

For specific concerns regarding COVID-19 we recommend that all Brainwave families either: seek advice from their own doctors;  call the Coronavirus Health Information Line on 1800 020 080; or speak with a registered nurse from the healthdirect hotline open 24 hours a day, 7 days a week on 1800 022 222.

If you or a member of your family becomes unwell and you think these are symptoms of COVID-19 please seek medical attention.

The safety of our Brainwave children, families, staff and volunteers is our top priority, which is why we are closely monitoring the COVID-19 situation and are postponing all family and fundraising events for the time being. We know how important these events are to our community and are therefore making all efforts to ensure they return later in the year. We will continue to deliver other key services that support our Brainwave children and families in their everyday life which is our mission and is as important to us as ever.


Friends of Brainwave

Meet Nora Sidarous, Director at The Street Canteen, and Friend of Brainwave.  The Street Canteen is a cafe located adjacent to the Sydney Children’s Hospital, Randwick.

Nora and her staff support Brainwave through the Catch-A-Break program by providing coffee and meals to parents of children in the paediatric neurology ward. On behalf of the Brainwave team, we would like to thank Nora and her wonderful staff for assisting our families. Read on to learn more about Nora’s experience with Brainwave.

What do you enjoy most about your workplace? 

The satisfaction customers get from visiting our cafes. They experience a space where they can escape the clinical surroundings of the hospital in addition to a fantastic variety of wholesome food on offer and excellent coffee.

How did you get started with Brainwave, and what attracted you to our work? 

We were approached by Brainwave directly. The Catch-A-Break program aims to provide short term financial relief for families with a child being treated in hospital for a brain illness by paying for coffee breaks and meals. My husband and I had been in a similar situation six years ago when we were in the hospital for 11 weeks with our second-born son. We sincerely appreciated the provision of paid coffee breaks and meals, and we now feel delighted and privileged to pay it back.

Any words of wisdom you live by? 

Trust in the Lord with all your heart, lean not on your own understanding, acknowledge Him in all your ways, and He shall direct your paths.


John's Story

Volunteers play a vital role in helping to deliver Brainwave Programs and Events to children and families impacted by neurological conditions. Each month we select one of our outstanding volunteers to feature and say thank you. The answers to the questions below will be published on our website and social media.

 

Volunteer Name: John Clifford

How long have you volunteered with Brainwave? 

I have volunteered with Brainwave for five years.

How did you get started with Brainwave and what attracted you to our work and mission?

I chose Brainwave from several volunteering options at QBE. My extended family includes some people with a disability, and I knew that the activities offered by Brainwave would not only be enjoyable for the kids but that they would give the parents such much-needed downtime too.

What was your first volunteer day like? How would you describe the volunteer experience?

My very first day volunteering was at Port Melbourne back in 2015, and I was surprised by how much planning goes into every stage of the activities and the day itself. We were well briefed and had every question answered. I was initially nervous about the possibility of one of the children having a medical episode while playing, but everyone was very welcoming, and I felt at ease.

What is your favourite part about volunteering with Brainwave?

My favourite part about volunteering is knowing that the camp/activity is a tremendous experience for the parents and kids. I believe that many families would look forward to these events for weeks. Being part of a team that can give respite to the parents, especially, is fantastic. I enjoy the enthusiasm that the kids bring to the activities. During my last Grantville camp, I sat with a different family at every mealtime and spoke with them, listening to their stories and the challenges that they face.

What have you learnt from volunteering? 

I have learnt that Brainwave parents are grateful for the help we give them. I have also learnt that the siblings of affected children carry a much more substantial burden than I could have imagined and that this is often overlooked.

Any words of wisdom you live by?

Success is not forever, and failure is not fatal.


Matt's Story

Volunteers play a vital role in helping to deliver Brainwave Programs and Events to children and families impacted by neurological conditions. Each month we select one of our outstanding volunteers to feature and say thank you. The answers to the questions below will be published on our website and social media.

 

Volunteer Name: Matt Farrugia

How long have you volunteered with Brainwave?

I have volunteered over the past 2.5 years.

How did you get started with Brainwave and what attracted you to our work and mission?

Shortly after onboarding with Ferrero Australia I was introduced to Brainwave and was invited to attend a Gala Dinner Fundraiser with a table of other Ferrero guests. After seeing what Brainwave contributed to local communities and families, in particular the children with neurological conditions, I was eager to get involved. Through the Ferrero and Brainwave community partnership, I was then able to volunteer my time and assist the Brainwave team at events.

What was your first volunteer day like? How would you describe the volunteer experience?

My first volunteer experience was eye opening and emotion filled to say the least. It was at a family camp weekend at Point Wollstonecraft. I had put my hand up to help out for the day, I had never met any of the Brainwave families before. Upon meeting them, I learned that each family had a different story, as I got to know some of the families more, I was made aware of just how important the work of Brainwave is to their families.

What is your favourite part about volunteering with Brainwave?

The smiles! Seeing the faces of the children and their families light up with big smiles as they enjoy a day out together and away from their everyday routines is my favourite part of volunteering with Brainwave.

What do you do when you’re not volunteering with Brainwave?

I have an amazing network of family and friends who I love spending time with.

What have you learnt from volunteering?

Sometimes I find myself not always able to donate financially to NFP organisations and their causes, through Brainwave I learned that a donation of time can be just as valuable. My experience through Brainwave has made me realise a few short hours of my time as a volunteer is invaluable to Brainwave and is a huge enabler for the organisation to do what they do so well.

Any words of wisdom you live by?

Do things for people not because of who they are or what they can do for you in return. But because of who you are. In a world where you can be anything, be kind.


accessible-beaches

Great news for Brainwave families this summer

accessible-beachesFinding an accessible beach for the whole family can be very difficult. So Brainwave were excited to learn about a new on-line directory to help our families.

Please visit accessiblebeaches.com to check out your options and plan your visit.


Leticia's Story

Volunteers play a vital role in helping to deliver Brainwave Programs and Events to children and families impacted by neurological conditions. Each month we select one of our outstanding volunteers to feature and say thank you. The answers to the questions below will be published on our website and social media.

 

Volunteer Name: Leticia Yamaki Camoleze

How long have you volunteered with Brainwave? I began volunteering with Brainwave in September 2019.

How did you get started with Brainwave and what attracted you to our work and mission?

I found out about Brainwave after conducting an online search into charities and organisations that assisted children with special needs and neurological conditions. In my own life, I have worked as a radiotherapy technician in Brazil and as part of my job, I met many children with brain cancer. I also lost my brother who was totally immobilized due to an accident that caused him severe brain damage. With this personal frame of reference, I understand how difficult it is for families with unwell children and I know how welcome any form of help can be. I wanted to join an organisation committed to helping these families and children. I feel that Brainwave does a spectacular job of assisting children and families in need.

What was your first volunteer day like? How would you describe the volunteer experience?

On my first day as a volunteer, I was made to feel welcome. The Brainwave staff were kind and they made the whole process very comfortable.

What is your favourite part about volunteering with Brainwave?

I like knowing that I am making a difference to the life of a child. I love to make Bear Essential packs with teddy bears - I always try to send positive thoughts and feelings with each one. 

What do you do when you’re not volunteering with Brainwave?

When I'm not volunteering, I'm studying, I'm trying to improve my English, and I help elderly people with everyday tasks that they find difficult.

What have you learnt from volunteering?

In today’s competitive world, volunteer work provides the opportunity to learn new things: the practice of group work, the exercise of economy, empathy and respect for diversity. It mobilizes people and allows them to meet others outside of their usual circle. People from various backgrounds can come together for a common purpose.

Volunteer work is the best way for a person to learn more about themselves. It allows for self-reflection, by encountering and solving challenges people can understand what they really want from their life and what their goals are.

Any words of wisdom you live by?

The universe operates through exchanges, everything you give you get back in some way. Exchange is what keeps life flowing. Without it, everything stagnates. In life, we can only be happy if we contribute to the world around us.


Andrea's Story

Volunteers play a vital role in helping to deliver Brainwave Programs and Events to children and families impacted by neurological conditions. Each month we select one of our outstanding volunteers to feature and say thank you. The answers to the questions below will be published on our website and social media.

Volunteer Name: Andrea Malfatti

How long have you volunteered with Brainwave? I have volunteered with Brainwave during the last four years at many events such as the Family Christmas Party, Annual Fundraising Gala, NSW Camp and NSW Family Day.

How did you get started with Brainwave and what drew you to our work and mission? The company I work for, Ferrero Australia, is proudly supporting Brainwave since 2010. As part of this partnership, Ferrero makes available its people and product to assist in Brainwave activities and raises funds via staff initiatives; that’s how I was introduced to the charity. In Australia, Ferrero proudly follows its global principle of “work, create, donate” and this partnership represents a natural and lovely association between the two organisations.

When I started to meet the wonderful families during the events, I experienced firsthand how Brainwave positively impacts their lives and wanted to contribute to this mission.

What was your first volunteer day like? How would you describe the volunteer experience? My first volunteer day was at the Family Christmas Party at Sydney’s Luna Park four years ago. It was a sunny and very hot day and seeing how much fun the kids had and the relief in their parents’ faces made my day and put everything in perspective.

What is your favourite part about volunteering with Brainwave? Seeing how these initiatives enable families experiencing the same challenges to be together and create important friendships. I am happy if I can help create an enjoyable and memorable day for the children and their families, but this would not be possible without Brainwave’s staff who have always went over and beyond!

What do you do when you’re not volunteering with Brainwave? I work as Corporate Communications Manager at Ferrero in Sydney. From January I will move to Ferrero’s headquarters in Europe and I will definitely miss Brainwave. However, I will follow you on social media to see all the great things I am sure you will do in the future!

What have you learned from volunteering? You feel much better when you contribute to something that makes people happy. Also, how much you can learn from people who face difficult challenges.

Any words of wisdom you live by? Something that I’ve learnt in my life, and it took a while, is the importance of living in the present moment, without worrying about the past and being anxious about the future. The following famous quote from the English novelist Ida Scott Taylor beautifully captures this approach “Do not look back and grieve over the past, for it is gone; and do not be troubled about the future, for it has yet to come. Live in the present and make it so beautiful that it will be worth remembering”.


Festive family fun at Brainwave’s VIC Christmas Party 2019

Early morning on Saturday 23 November, nearly 400 Brainwave children and their families headed to iconic Luna Park in St Kilda, to celebrate the annual Brainwave Christmas Party. It was a lovely sunny morning, as Luna Park filled with the sounds of happy families, sharing excitement, laughter and good cheer.

The energy was high as many families headed straight to their favourite rides for unlimited fun! Throughout the park, families were greeted by Frosty the Snowman and Rudolph the Red Nose Reindeer, and the children were kept highly entertained chasing giant bubbles created by our amazing Elf Bubble Blower.

Getting into the Christmas spirit, children enjoyed writing heartfelt letters to Santa and posting them to the North Pole. Our talented face painters Janelle and James were kept very busy all morning, creating spectacular works of art on the faces and arms of delighted children.

Extra special guests this year were a team of therapy dogs from Delta Society Australia’s Paws the Pressure Program. The four Delta dogs and their friendly owners were a wonderful addition to this year’s event and the gentle-natured dogs, Ebony, Maggie, Mia and Chief were a big hit with Brainwave children and their families, who enjoyed spending some special, quiet time patting and cuddling them.

Santa made his grand appearance and children delighted in sitting in his sleigh for a photograph, before receiving their Christmas gift.

Families enjoyed some tasty morning tea, then everyone was treated to a delicious spread of chocolates supplied by Ferrero.

Events such as this would simply not be possible without the incredibly generous contribution of our corporate and community volunteers, who gave so generously of their time to ensure our families had an amazing day. Our volunteers from Mercedes-Benz, QBE and OMD, along with our community volunteers Lynda, Danny, Chris, Chloe and Anthony, brought such warmth, fun, care and Christmas cheer to our families and we are so grateful for their support. Thanks also to our supporters at Village Roadshow.

The Brainwave Christmas Party is a highly anticipated event for our families, as well as the Brainwave Team, and we love sharing the joy as families and friends reunite and connect whilst enjoying much festive fun.

Brainwave wishes our families, corporate sponsors, supporters and volunteers a safe and happy Christmas and we look forward to sharing an exciting year ahead with you in 2020.


A very merry Christmas Party at Luna Park Sydney

It was a bright sunny day when more than 220 NSW Brainwave children and their families excitedly arrived at Luna Park for the 11th annual Brainwave Christmas Party celebration, on Saturday 16 November. What a wonderful day it was, filled with much laughter, fun and excitement.

Upon entering the Sunset Room, inside the Crystal Palace, the children were greeted by a hilarious, Cheeky Elf, who kept them highly entertained with juggling tricks, funny jokes and candy cane treats!  There was a letter-writing station where children composed heartfelt letters to Santa listing their special present requests, then posted them to the North Pole. Children were also able to get creative and enter drawings into a competition to design the 2019 Brainwave Christmas card. Our imaginative face painter Shayne and talented airbrush tattoo artist Julian, were kept busy the whole day, creating beautiful works of art on the faces and arms of the youngsters… and the young at heart!

Families enjoyed a tasty spread for lunch and everyone was treated to a delicious array of chocolates generously supplied by Ferrero.

A highlight of the day, of course, was when Santa made his grand appearance. There were squeals of delight as he entered the room, then the children queued patiently to meet the big man in red, posed happily for photos and excitedly received their gifts.

Inside Luna Park the energy was high as families made their way to their favourite rides, with smiles from ear to ear.

The annual Christmas Party is a highly anticipated event on the Brainwave calendar, and it is a wonderful opportunity for families to come together, reunite with friends and share in the spirit of Christmas.

Events such as this would not be possible without the incredible support of our corporate and community volunteers, who gave so generously of their time to ensure our families were treated to a very special day. Our volunteers from Ferrero and QBE, along with our community volunteers Jorge, Vanessa and Gita, once again brought warmth, fun, care and Christmas cheer to our families and we are so grateful to them all for their amazing support.

Brainwave wishes our families, corporate sponsors and volunteers all the very best for the festive season and we look forward to sharing an exciting year ahead with you in 2020.


Jorge's Story

Volunteers play a vital role in helping to deliver Brainwave Programs and Events to children and families impacted by neurological conditions. Each month we select one of our outstanding volunteers to feature and say thank you. The answers to the questions below will be published on our website and social media.

Volunteer Name: Jorge Tomas

How long have you volunteered with Brainwave? I have volunteered with Brainwave for eight years, the first time was in July 2011 at the Gala Night. I have volunteered at five camps and far too many Sydney Christmas parties to count!

How did you get started with Brainwave and what drew you to our work and mission? I first volunteered with Brainwave at their Gala Ball. CBA were supplying the EFTPOS machines and I put my hand up to help with the event. Since then I have developed many friendships with the kids and their families. I have a deep admiration for the parents and siblings of these kids – they truly give new meaning to love and family. 

What was your first volunteer day like? How would you describe the volunteer experience? My first volunteer day was at the Gala and it was tiring. I also helped out at a camp and whilst there the kids encouraged me to join them in the activities. I went on a giant swing – jumping off it felt like Everest! I am the sort of person that likes to keep my feet firmly planted on the ground but the kids were very convincing!

What is your favourite part about volunteering with Brainwave? The families and the kids, I take my hat off to each and every one of them.

What do you do when you’re not volunteering with Brainwave? I love travelling back home to Spain, spending time with my 5-year-old granddaughter, spending time with my wife and watching my beloved FC Barcelona play soccer.

What have you learnt from volunteering? I have always had a big heart and am happy to donate my time. Helping others and making kids smile is worth it in my opinion.

Any words of wisdom you live by? Always be kind, use your manners and help others.


Brainwave Consumer Advisory Committee calls for Expressions of Interest

Brainwave Consumer Advisory Group - EOI

You are invited to help us shape the future of Brainwave

With your experience as a parent or carer of a child living with a neurological condition, or a young adult with a history of a childhood neurological condition, you may be an ideal candidate to join the Brainwave Consumer Advisory Committee for a one year term.

Brainwave Australia is establishing a Consumer Advisory Group (CAG) to provide advice and support directly to the Board of Directors.

We are looking for parents/guardians or immediate family members of children or adults with a history of living with a childhood neurological condition[1] to join our inaugural CAG for a one year term.

The committee will be asked to provide feedback on a variety of matters, including but not limited to:

  • addressing specific issues faced by families and children impacted by neurological    conditions
  • our strategic priorities
  • the impact of government policies
  • advocacy issues
  • resources
  • our programs, services, training and events planning

The 12 consumer representatives will be selected to reflect our diverse community and will be structured to have women and men of different ages, people living in metropolitan or rural locations, families who are registered with Brainwave and those who are not.  We are particularly interested in hearing from:

  • parents/guardians of a child with a neurological condition1
  • carers/family members/ friends of a child with a neurological condition
  • young adults (18 – 23) living with a neurological condition, or a history of living with a childhood neurological condition
  • parents of graduated Brainwave children

The CAG will meet at least twice a year in person (for those members based in Melbourne only); several times by webinar/teleconference; and will conduct a lot of business by email.

There will also be opportunities to attend major Brainwave Australia events and mix with Brainwave Australia Board Directors and staff.

All expressions of Interest application forms must be submitted by the close of business on Wednesday 18th December 2019.

If you would like to discuss your interest in joining the CAG, please contact Dr Amy Timoshanko, Brainwave CEO on 1300 766 819.


A weekend to energise, connect and reflect at Camp Brainwave

Setting off on a Friday afternoon in mid – October, 10 Brainwave families escaped to the captivating Bass Coast views of UC Camp Grantville Lodge.

With an extensive program planned for the weekend, children and adults alike enjoyed a range of activities that spoiled the senses. Letitia Condron, Music Therapist and Piano Teacher bought families together to experience the joy of music and movement that provided a hugely fun, and inclusive experience. Debra Raboteg from Breath In2 Yoga and her trio of helpers directed us through some gentle Yoga poses, core strengthening exercises, mindfulness and breathing techniques.

Parents had some down time to connect and share stories at Parents Hour while the children were entertained by the team from Maru ‘Go Koalas’ Animal Display. Children were fortunate to get up close with some Australian wildlife including a Dingo, Koala with its own gum tree, and even an 8 week old baby joey!

Despite the weather changing seasons every minute, the UC Camp Grantville campsite provided the perfect bush landscape, twinkling clear skies at night, incredible wildlife, and even a new arrival of a spring lamb!

Families were also treated to a hilarious performance by ‘The Svens’ (aka Paul Bourke and Cam Venn). Much laughter ensued as fictional Marine Biologists, Sven and Sven, took the audience on a highly entertaining underwater submarine adventure to Atlantis with a cameo appearance by Johnny Depp (aka Brainwave’s Program Manager Suzy)! Hugely entertaining, families also learnt about recycling and the effects of plastic on the environment.

Before camp wrapped up on Sunday, the game of Kids v Parents volleyball was an energetic display of connection and bonding – with the UC Camping staff working with the kids towards a close and exhilarating win!

A special thank you to a highly engaged, enthusiastic, and knowledgeable team of UC Camping staff, and John our wonderful volunteer from QBE, and who made sure everyone was supported and having a great time.

One of the Mums described her daughter’s experience at camp:  “…She has identified with Brainwave as ‘my organisation’, very aware that it's ok to be different and feels quite special coming to Brainwave events.”

Camp Brainwave was, and will continue to be, a unique experience for all, and a strong example of the power of families supporting families.

#togetherwecanmakeadifference