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Flicker of Hope

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25.01.2022 Did you know that 80% of people with NF1 experience some level of cognitive impairment. This can range from mild learning difficulties to significant behavioural problems, coordination issues, autism etc. Tonights Friends of FoH are Chris and Jess We are friends of FoH because finding a cure for Neurofibromatosis is something very dear to our heart! Neurofibromatosis has impacted several members of our family and we are so grateful for all the hard work the Flicker of Hope ...team put in to try and find a cure! #FriendsofFoH

25.01.2022 Last week we shared the exciting news that the TiNT MEK inhibitor trial was now a reality. Today we had the pleasure of presenting Dr Jonathan Payne from the Murdoch Childrens Research Institute with a cheque for $500,000. This is the amount that Flicker of Hope were asked to contribute to the project. Were incredibly thankful for the support of so many companies and individuals who have generously donated to help us achieve our fundraising goal. Earlier this year, realisin...g that we still had a way to go to reach our target we approached some companies, many of whom had already made donations to help us achieve our goal. Due to their amazing support we have been able to keep our promise and shine a light on NF. Special thanks to: Delta Group Pty Ltd Hitachi Australia Coverforce Insurance Norstar Aware Pty Ltd Lantrak SLH Industries Scaffold Logistics EPH Group GSFM Pty Ltd Komatsu McMillan Engineering Breakthruhammers ILD Sinopec Westar Truck Centre Finer Hydraulics Embery Attachments Densley Earthmoving Your help has made this amazing project possible!

25.01.2022 We are proud to announce, that today, Flicker of Hope donated 40 blood pressure monitors to the Murdoch Children's Research Institute at the The Royal Children's Hospital, Melbourne. Zoe from Flicker of Hope, Gary from Delta Group and Derek and Tony from Engineering Elements met at the hospital to present the monitors to Prof. Cathy Quinlan and Dr. Gabriel Dabscheck. These 40 monitors will be an integral part of a new pilot program. This research program is a collaboration b...etween the MCRI and the RCH and is being led by Prof. Quinlan and Dr. Dabscheck. If the program proves to be successful, it may allow for the development of a much larger program. It is hoped this could enable NF patients from areas all over Australia, that do not have access to NF clinics, to gain access via Telehealth appointments to appropriate NF specialists. A big thank you to everyone who was involved! #neurofibromatosis #NF1 #NF2 #NF #shiningalight

25.01.2022 Just over one week left to enter our giveaway competition! Winner will be drawn on the 1st of November so be sure to get your entries in quick! Our October sale is also still running, with free postage included on all purchases of Flicker of Hope merchandise for the rest of the month!

24.01.2022 Check out this awesome video from our friends Rachel and Jacob all the way from the Gold Coast! For your chance to win the car, head to the link below! https://www.rafflelink.com.au/kickingbuttfornf... #NF #NF1 #NF2 #neurofibromatosis #shiningalight #kickingbuttforNFresearch

24.01.2022 Did you know the #NF1 gene is relatively large? This makes the gene rather prone to mutations and is the reason why 50% of NF1 cases are the result of spontaneous mutations. Tonights friend of FoH is Anne... I am a friend of FoH because it is a very worthwhile foundation and it will benefit a lot of people #friendsofFoH

24.01.2022 Did you know the month of May is neurofibromatosis awareness month? Given the current cold weather, purchasing a Flicker of Hope hoodie would be a great way to show your support! We have black and white hoodies available in sizes S-XXL. ... $50 + $10 postage and handling For enquiries, just send us a message!

24.01.2022 Tonights Friend of FoH is Eileen I am a friend of Flicker of Hope because I am very close to a family who are challenged by NF. I feel privileged to be able to walk this journey with them. My gratitude and appreciation go out to the team members who established the Flicker of Hope Foundation which gives hope and support to all who are challenged with NF. #friendofFoH

23.01.2022 Flicker of Hope is beyond excited to share some incredible groundbreaking news with you! Today, the Federal Minister for Health, Greg Hunt, announced that the Australian Government will invest over $760,000 to partially fund research into Neurofibromatosis type 1 in paediatric patients. This is the first time the Australian Government has funded research into NF. Flicker of Hope had raised $500,000 to fund the Melbourne arm of this drug trial, and our massive fundraising eff...orts have not gone unnoticed by the government. With the government adding to our fundraising, along with a contribution from Children's Tumour Foundation Australia, the TiNT MEK inhibitor trial drug trial is now a reality and able to proceed on a national basis! This news provides more than just a flicker of hope it provides hope for a much brighter future for those living with NF. We thank each and every one of you for your support and generous donations. FOH has raised in total over $600,000, and every single cent has been donated towards essential life changing research. You are part of this and for that we say a heartfelt thankyou! Of course, there is always more to be done and this is just the start. FOH will continue to raise awareness and funds for future research as we seek to find not only answers, but also prevention and possibly a cure. Today is just one step forward on our journey. Thank you for walking this path with us. We look forward to keeping you updated and staying in touch. If youd like to make a tax deductible donation to FOH please visit https://donate.everydayhero.com//a1d3d51e-d9d4-4033-98d3-5 For more information on the federal governments announcement today visit https://www.health.gov.au//136-million-for-reproductive-ch

23.01.2022 This is the story of a young boy named Oliver, who was recently featured on 7NEWS Melbourne. His mother Louise has kindly decided to share his NF journey. Oliver is the youngest of our four children. We always knew that there was something just a little different about him as he was a little slower to meet developmental milestones, but we just accepted that was him. Hes a very cheery, happy, healthy and chatty boy. Hes always full of questions, and likes to know about ev...erything and everyone! Olivers NF1 story started less than a year. He was competing at winter Nippers when a GP friend noticed café au lait spots on his back. She asked me if he had groin or underarm freckling (he does, loads) and she suggested he may have NF1. After some reading around suddenly all Olivers little struggles made sense e.g. challenges with fine and gross motor skills and also altered memory processing. He was referred to the NF1 clinic at the Royal Childrens Hospital (RCH) in Melbourne but there was a 6 month waiting list. In the meantime we saw an Ophthalmologist. A brain MRI revealed large optic nerve gliomas, a brain stem tumour and nerve vacuolisation. Within two weeks of getting the MRI results in October he had a port inserted and commenced 68 weeks of weekly, low dose chemotherapy. It was obviously a stressful few months for us, both the diagnosis and the logistics of travelling to RCH each week. However, Oliver has been absolutely fantastic, has had no side effects and is going really well. Whilst we were devastated by the news, if it hadnt been picked up, the outcome could have been much worse. Regular MRIs have shown no further growth of the tumours. Our life has been made much easier recently as Oliver is now able to receive his chemotherapy via Hospital at Home, so he can have his treatment and be back at school within 45 minutes. Oliver is just like any other 9 year old boy he climbs trees, competes at Nippers, plays soccer, rides his bike and scooter, runs etc. He definitely finds some of these harder than other kids but at least he now knows theres a reason for this. We are extremely grateful for such fabulous medical care at RCH and supportive family and friends. Visits to the oncology unit at RCH keeps us well-grounded and we realise how lucky we are. Thank also for all the hard work that organisations like Flicker of Hope are doing to help these kids have a brighter future.

23.01.2022 Check out this message from little NF superstar Katie! As some of you may know, May is NF awareness month. What better way to spread the message than to buy a ticket in our raffle for a brand new MG3! All funds raised go straight towards research that could change the lives of people like Katie!... Link in below: https://www.rafflelink.com.au/kickingbuttfornf

23.01.2022 Did you know that there are three types of Neurofibromatosis? They are NF1, NF2 and Schwannomatosis. Each one is caused by a mutation on different chromosomes and the complications and severity can vary according to the individual.... Tonights friends of FoH is Ellen and her Family. We are friends of FoH because you do great work and the fund raising and awareness you provide through your experiences, Annes knowledge of NF, the resources, doctors and info provided is vital to all. Your fund raising efforts are brilliant! Our family has only touched the surface with NF1 - I tell myself we are lucky today but it could change tomorrow. It is definitely a very different journey for each individual and so much research is required. Thank you for sharing your journey and all the ups and downs #friendsofFoH

22.01.2022 Our recent story featuring the Brokenshire family attracted over 13,000 views! Thank you to our followers for sharing the story and helping to raise awareness of NF. Unfortunately Faye has experienced some health challenges over the last few months and is currently in hospital. We will keep you updated on how she is. We know that Faye has appreciated the many encouraging comments from our Facebook community. Each persons NF journey is unique, and wed love to hear about yo...ur experience with NF. Please contact Flicker of Hope via Messenger or [email protected] if you would like to share your story. Flicker of Hope shines a light by raising funds for research into NF. 100% of donations are directed to research The Flicker of Hope Foundation operates on a no cost basis thanks to the generosity of individuals and a team of volunteers. If you would like to make a tax deductible donation please head to https://www.flickerofhope.org.au and click on the Donate Now button or contact us via Facebook.

22.01.2022 FACE MASKS NOW AVAILABLE Help us to bring a Flicker of Hope to all and help stop the spread of COVID-19! Flicker of Hope have combined with Laurs the Label to produce our very own face masks! ... The masks consist of 3 layers and include an adjustable nose piece. The outer layer is made from a rugby knit jersey cotton, and polyester and cotton layers. The masks are proudly made and printed in Melbourne, and are fully machine washable! They are available in size M and L, and are priced at $18 each including postage. $4 from each mask sold will go directly to FOH Research. To order, please contact us via Facebook or email us at [email protected]

22.01.2022 This is the story of a young man named Jye and his #NFJourney. A big thank you to his mum Kristie for sharing! Hello to everyone. We are the Williams Family and we live in tropical North Queensland at Balgal Beach just north of Townsville. Our world with NF began when Jye was 2 years of age, but we (Kristie and Troy) started to notice signs from when Jye was six months old. He started to get what I thought were birth marks coming up on his little body. When visiting the GP o...Continue reading

21.01.2022 Our Flicker of Hope is growing and our Christmas tree is shining brighter as we were able to add another 16 candles and 12 baubles since our last update. Thank you to everyone who has contributed so far. A special thanks goes to two great friends of FoH Eileen and Dan for their significant donation of $400 directly into Flicker of Hope’s bank account.... Santa’s nice list is definitely growing! To add a candle or a bauble to our Christmas tree follow the link below: https://shineaflickerofhopethischristmas.gofundraise.com.au

21.01.2022 Chapter Four - Isabella Marie Petropoulos On November 22, 2017, Isabella Marie Petropoulos arrived. Today she is a lively two year old with a bright bubbly personality, and is generally considered an absolute delight! Her favourite things in the world are Playdoh, the movie Frozen, animals particularly horses - and her best friends are a pony named Thomas, and a two year old wombat called Boo. Boo joined the family around the same time as Isabella and the two of them wer...e featured on the Channel 9 Today Show in September 2019 causing a viral sensation!! Isabella is the daughter of Nick and Elizabeth, and together they live on a farm in Hamilton. In an absolutely amazing co-incidence, Isabella is the niece of Zoe Petropoulos. Zoe is the inspiration behind the Flicker of Hope Foundation. Isabellas story is at the beginning, but at the moment its clouded by the possibility that she may have also inherited the Neurofibromatosis gene. For this young family, this is the great unknown. Isabella has a mother, grandmother, great grandfather and its possible she also had a great, great grandparent affected by NF. Presently, there is no certain way of testing Isabella, and so the family, like so many others impacted by NF, live each day wondering and fearing what the future may hold. Until research into Neurofibromatosis becomes more widespread, the answers that families like Isabellas are seeking cannot be given. Her parents know that she has a 50% chance of inheriting the condition. For now, they live in hope that this will not happen. This is the story of three, and possibly more, generations. Even though Alans parents never showed obvious signs of having Neurofibromatosis, it is almost certain that one of them had the condition. Because Alans parents Victor and Ruby had two boys with the condition, current medical opinion is that one of the parents had Neurofibromatosis, quite possibly in a very mild form. The question of the fifth generation has been explained in Isabellas story. At this point, we conclude the telling of the story of the Brokenshire family, but It is a story that is far from finished. It can only reach a conclusion when enough meaningful and effective treatment is discovered to help cure, or at the very least control, this condition. The Flicker of Hope Foundation was formed to help raise awareness of Neurofibromatosis. By doing this, we are hoping to raise enough money through donations and sponsorship to fund the ground breaking research so desperately needed, to provide hope to those living with NF, as well as future generations. Zoe says everyone has the right to hope and everyone has the right to dream. Lets hope the dreams of the Brokenshire Family, and NF patients everywhere, can one day come true.

21.01.2022 As you might know, May is Neurofibromatosis awareness month. To celebrate, we are beginning a campaign called Friends of Flicker of Hope We are asking anyone interested to send in a photo of yourself and tell us in one or two sentences why you support FoH. To begin we have Margaret.... Im a friend of FoH because I know the work they are doing is making a difference to those people with NF. #friendsofFoH

20.01.2022 Tonights Friend of FoH is Moira. I am a friend of the Flicker of Hope foundation due to attending an event relating to this foundation and purchasing a candle . All the best in research efforts of the foundation. #FriendsofFoH

19.01.2022 Did you know that #NF was first known as Von Recklinghausen Syndrome. This name came from German Pathologist Friedrich Daniel von Recklinghausen who first described #NF1 in 1882 Tonights Friend of FoH is Sue I am a friend of FoH because they do a great job of raising money for research into Neurofibromatosis.... #friendsofFoH

18.01.2022 Did you know that approximately 1 in 2500 Australians have NF? That means that every three days a baby with NF will be born in Australia. Tonights friend of FoH is Mikayla. I am a friend of FoH because I admire the work that the Flicker of Hope Foundation has done to a disease that gets very little recognition but affects many people and many more future generations.... #friendsofFoH

18.01.2022 Just as we enter a new financial year, we are also entering a new challenge to bring greater awareness and treatment for people living with Neurofibromatosis. WE NEED YOUR HELP. Many of our donors who have supported us so generously over the last 18 months, have never met or heard the stories of people living with NF other than Zoe. We would love to hear from people prepared to tell their story or that of their children, so that those who have provided us with such fantastic... support can feel better connected to the NF community. If youre prepared to share your story, please contact us. #NFjourney #NF #NF1 #NF2 #neurofibromatosis #shiningalight

18.01.2022 This is the story of Sams #NFjourney. Thank you to Ellen for sharing her sons story. We celebrate Sam every day, he is our ray of sunshine. healthy and happy In summary, Sam was diagnosed at 6 mths young with possible nf1 as he had the freckles and no other issues and his condition is a spontaneous mutation not genetic. There were no other indicators either, development and growth were normal if not off the charts and still today growing strong.... Sam presents with the freckles and some quirky challenges that seem to be quite normal for 9 year old boys! recently an Optic Glioma was found in his eye (lesion) which now confirms NF1 we will closely monitor this. We see a paediatrician twice a year. An ophthalmologist annually and the NF1 rch clinic annually too. Having connections with tremendous organisations such as flicker of hope, Murdoch research and Childrens tumour foundation has been invaluable, everyone needs to touch base and connect, We had never heard of NF1 so are learning every day as much as we can for our boy and us. We know it can be progressive so need to keep ahead. Sam wonders about his freckles and how that makes him different - I give him confidence and strength in his abilities, lets focus on the positives, today we are relatively unaffected, tomorrow and what the future holds is unknown - faith, hope, prayers and optimism for our kind caring motivated old soul who enjoys family time, food, going to school, being active, funny, quirky and creative. Prayers for all other NF families too. There will be bumpy rides along the way and we will get through. I hope all families get through. #NF #NF1 #NF2 #neurofibromatosis #shiningalight

17.01.2022 Tonights Friends of FoH are Brendon and Reidel. We are friends of FoH because we know someone with NF and understand what they go through and think it is amazing what the Flicker of Hope Foundation has achieved in just 18 months. Keep up the great work you are doing for NF We think Brendon and Reidel both look great in their Flicker of Hope hoodies! If you want to get your hands on one as the weather keeps getting colder just send us a message!... #friendsofFoH

17.01.2022 A big thank you to Yarra Valley Grammar for the ongoing support they have provided to Flicker of Hope. YVG have been part of the FOH journey right from the start raising funds by holding free dress days, cross country runs and choosing FOH for their Staff Association Christmas Fundraiser Were so grateful for the amazing support of staff, students and the wider YVG community we cant thank you all enough! Every donation makes a difference and 100% of donations to FOH are directed towards research into NF. Click here to make a donation https://donate.everydayhero.com//dc63fb78-d5fa-409b-ba73-2

17.01.2022 Last chance to enter our giveaway competition! Winner will be drawn this Sunday!

17.01.2022 Thank you to all those who have donated to light up our Flicker of Hope Christmas tree. So far there are 21 candles and 7 baubles on our tree from donations raised through the link below as well as direct deposits. Each candle represents $20 and each bauble represents $10.... To donate a candle or bauble to the Flicker of Hope Christmas tree go to the link: https://shineaflickerofhopethischristmas.gofundraise.com.au

17.01.2022 Last week we shared with you news of a pilot program with The Royal Children's Hospital, Melbourne. We are delighted to announce that Neville Williams from Delta Group has succeeded in his mission to complete fundraising for the 40 blood pressure monitoring machines that were requested by the Royal Children’s Hospital Melbourne. A big thank you to Derek Kinsella and Engineering Elements for coming on board and making a significant donation towards this project.... A big thank you also needs to go to the Chandra Pharmacy on Blackburn Rd, Doncaster East for organising the purchase of these machines at cost price. The team there also liased with Cheng from Omron to purchase child sized cuffs. To allow us to complete this purchase within our budget, Omron agreed to donate 10 of the child sized cuffs and 40 padded cases to store the equipment in. Once again, a huge thank you goes to Neville, Derek, Engineering Elements, Chandra Pharmacy and Omron. This has been a truly United effort! Details of the pilot program will be available at flickerofhope.org.au soon.

16.01.2022 Tonights Friend of FoH is Karen I'm a friend of FoH because they are a fabulous Charity raising funds to help support our fellow Aussies with NF. We all need a Flicker of Hope #FriendsofFoH

15.01.2022 Its been so awesome to see so many people around the country loving their Flicker of Hope face masks! If you would like to get your own mask, just send us a message or email us at [email protected] Masks are available in medium and large for $18 each (postage and handling included)

15.01.2022 Wishing a happy Mothers Day to all Mums. We hope they have been well and truely spoiled! Did you know that a child born to a parent with NF has a 1 in 2 chance of inheriting the gene. However, the symptoms and severity the child may experience can be completely different to their parents NF journey. Tonights Friends of FoH are Andrew and Laura... We are friends of FoH because someone close to us has been diagnosed with NF. We continue to support their cause in raising awareness throughout these tough times #FriendsofFoH

15.01.2022 A huge thank you to Christine for sharing her familys NF journey. This story highlights how different each persons experience with NF can be, even within the same family. When Paul and Christine decided to have children they both knew about NF but didn't know anywhere near as much as they would learn in the years to follow. Paul has NF 1 through spontaneous mutation ie the first in his family with NF. His case is very mild....Continue reading

14.01.2022 Chapter Three - Elizabeth Jayne Astbury Prior to his death in 1991, Alan Brokenshire shared in the joy of the arrival of his third grandchild. Elizabeth Jayne Astbury, the daughter of Faye and Graeme, was born on November 9, 1989. Despite the challenges that Faye had during the last part of her pregnancy, Elizabeth was born perfect, and was very much loved by her parents and extended family....Continue reading

12.01.2022 This story which we will share with you in four parts over the next week - begins nearly a century ago. It is a story that spans three, and possibly more generations. It is a story of courage, love, resilience, and above all, the strength and depth of the human spirit. This story is not a work of fiction, or a fairy tale. It is a true story that traces the journey of a family touched by the condition Neurofibromatosis. The family hope that sharing their story will provid...Continue reading

11.01.2022 As NF Awareness Month has now come to an end, we would like to thank all those who contributed to our Friends of FoH campaign. But before we bring this campaign to a close, we have one more very special piece from Cathy and her Family. Ive been hoping to express what understanding Neurofibromatosis has meant to our family during NF awareness month as its been something that has touched and inspired us in unexpected ways. In these unusual times, we are all thinking of our ...wellbeing and do everything we can to sanitise, isolate and to keep safe and healthy. We discuss and worry about what if we get this virus and its potential severity. Its daunting & yet hopeful that a multitude of scientists worldwide can find a vaccine and better treatments. Its also heightened our thoughts in trying to understand what it must feel like for those with NF who live with what ifs every day of their lives, and not just these weeks and months. What if scientists can be funded to find better treatments for NF? What if theres realistic hope for a more healthy future if you have NF? Weve met amazing people through Flicker of Hope, and have been touched by Zoes amazingly positive & stoic approach to her painful & personal experiences. We admire how through Flicker of Hope, shes promoting awareness & injecting hope and positive actions. We would have remained less educated and definitely less inspired without this newfound awareness, even though it was unknowingly so close to us! Thank you to all those involved in this charity and the courageous people who share their stories, to spread awareness and compassion, and most of all, giving time and energy to raise money for proactive initiatives. #FriendsofFoH #NFawarenessmonth

11.01.2022 I’M A BIG GIRL NOW! After many years under the care of doctors at the Royal Children’s Hospital, Zoe has had her first appointment with Prof. Kate Drummond at the The Royal Melbourne Hospital. This is the location of the adult NF clinic in Melbourne. A transition program has now been set up so that patients at the end of their RCH journey get to meet together with the new team from the Royal Melbourne Hospital. Each patient is presented with a folder and USB of their time and records at the RCH and given a tour to familiarise themselves with the new environment. This program helps to smooth this transition and gives these young adults a degree of reassurance as they move forward in their NF journey.

11.01.2022 Tonights Friend of FoH is Anna I am a Friend of Flicker of Hope because I have known Zoe my beautiful neighbour since she was born Always amazed with Zoe her positive attitude lovely smile and her determination to make the most of every day no matter the hiccups Am happy to support her and Flicker of Hope Foundation which she was an inspiration for and has helped establish.... #FriendsofFoH

11.01.2022 On Friday, the Herald Sun newspaper in Melbourne, published a story after an interview with Zoe and Anne. This tied in with the presentation of our cheque. We thought that we would take the opportunity of sharing it with you all and also to thank those who not only saw it in the paper, but promptly visited the website and made donations. It was a wonderful and very welcome surprise.

11.01.2022 Help us Shine a Flicker of Hope this Christmas! https://shineaflickerofhopethischristmas.gofundraise.com.au

10.01.2022 May is NF Awareness Month. Help shine a flicker of hope and raise awareness with our May merchandise specials. During May, Kicking Butt for NF Research T-shirts are just $25 each with free postage. Head to https://www.flickerofhope.org.au/merchandise/ for size & colour options, and to download the merchandise order form.... Everyone loves a sticker ... purchase our special pack of six small stickers featuring our Mascot "Blaze" for just $10 - and we'll include free postage. These sticker packs would be a fantastic way to help raise awareness. Message us if you'd like to arrange to purchase some packs to sell at school, sporting clubs, and to your friends and family. Every dollar helps shine a light on NF and raise funds for vital NF medical research.

10.01.2022 An open letter from Anne Petropoulos, Flicker of Hope Director and mother of an NF patient Thank you to everyone who has offered their congratulations in response to our recent announcement. This news has meant that many people have discovered Flicker of Hope for the first time welcome and thank you for joining us. Flicker of Hope was formed in 2018 in response to the realisation that there was very limited research and effective treatment for people with Neurofibromatosis.... This became very evident as our daughter - Zoe - experienced a number of medical issues associated with the condition. After discussions with specialists in the area, it became clear that funding specifically for research was desperately needed. Zoes father, Con Petropoulos, Founder & Managing Director of Delta Group Pty. Ltd, made a promise on behalf of the company to donate $500,000 over 5 years towards direct research into NF. To ensure this full amount was directed to research, and in order to seek further donations, the charity Flicker of Hope was born. 100% of all donations to Flicker of Hope are directed specifically towards research into NF. We are thankful for the support of many other companies and business associates who have made significant financial contributions enabling Flicker of Hope to fund two important projects the Blood Database Project and the TiNT MEK Inhibitor Drug Trial. The Blood Database Project aims to help to diagnose cancer in NF patients up to 10 years before it presents clinically. Generous donations by family, friends and followers, as well as fundraising activities such as breakfasts, coffee mornings, lunches and the sale of our merchandise has all contributed to our fundraising success. EVERY DOLLAR RAISED is directed towards research projects. Flicker of Hope is an entirely volunteer based organisation with all administration and labour being completed by hard working volunteers. No administration costs are deducted from any funds raised. For further information, please visit our website www.flickerofhope.org.au All donations big or small make a difference! Click here to make a tax deductible donation https://donate.everydayhero.com//65c97845-a2d4-46ee-ba1e-f A great way to show your support and help us share our message of hope is to purchase a Flicker of Hope T-shirt or hoodie. Contact us via FB or email [email protected] Every dollar is important to bring hope to NF patients thank you for your ongoing support. Anne

09.01.2022 TODAY IS WORLD WIDE NF AWARENESS DAY!!! So many people like to look at the negative aspects of living with NF and all the struggles that come with it. But without it, I wouldnt be the person I am today! Living with NF has given me the opportunity to speak in front of corporate groups, talk on the radio, be interviewed by local newspapers, it has also taught me how to prioritise education and personal life. I have been able to make some amazing friendships with other young p...eople who live with a variety of different types of illnesses and medical conditions. With these friends I have been able to go on camps and had the experience of recording songs in a recording studio and countless other things I am grateful I had the chance to do. But most importantly, it has given me a positive outlook on life. Life is too short to worry about what ifs. Life is to short to worry about the unknown. The only thing anyone can do is take life one day at a time. We dont have a say in what life throws our way, but we do have a say in how we act and respond to it. No matter who you are, no matter what challenges you face in your life, things will always get better, but it is up to you to make them better. To all the people out there living with NF or caring for family members, remember, NF does not define who you are. It simply adds to your uniqueness. #NFawarenessday #NFawarenessmonth #NFawareness #NF #NF1 #NF2 #neurofibromatosis #shiningalight

09.01.2022 Help us decorate the Flicker of Hope Christmas Tree! https://shineaflickerofhopethischristmas.gofundraise.com.au Your $10 donation to Flicker of Hope will sponsor a bauble for our tree Your $20 donation to Flicker of Hope will sponsor a candle for our tree... Donations can be made in multiples of $10 up to any amount. For example, a $50 donation will sponsor 2 candles and a bauble. Every donor (if they choose) will have their name added to Santa’s Nice List! We’ll post a new photo every few days to show you how our tree is lighting up we can’t wait to see those candles flickering brightly! Together, we can Shine a Flicker of Hope this Christmas.

09.01.2022 Check out this message from one of our littlest supporters Bella! All funds raised from our raffle go straight towards research that could change the lives of little NF sufferers just like Bella! For your chance to win the car head to the link in below.... https://www.rafflelink.com.au/kickingbuttfornf #NF #NF1 #NF2 #neurofibromatosis #shiningalight #kickingbuttforNFresearch

09.01.2022 Thanks to everyone who has purchased some Flicker of Hope merchandise during our October sale so far! We still have plenty of stock available, so if you’d like to get some FoH goodies for yourself, contact us via Facebook. All postage is free for the rest of October!... T-Shirts - $25 Children sizes 2, 4, 6, 8, 10 and 12 available in white only Adults sizes S, M, L, XL, XXL available in white or black Hoodies - $50 Children sizes 2, 4, 6, 8, 10 and 12 Adults S, M, L, XL, XXL Tote bags - $5 Masks - $18 Packs - $50 Tote bag T-shirt Pen Badge Bracelet Mask Valued at $65

09.01.2022 Congratulations to Shellee Abel, the winner of our giveaway competition! Thanks to everyone who participated and also to those who purchased merchandise during our October sale.

08.01.2022 Still time left to secure your chance to win a brand new car valued at $17990! Just $5 a ticket! Peter and Josh Daicos have got their tickets, have you got yours yet?... Follow the link below: https://www.rafflelink.com.au/kickingbuttfornf

08.01.2022 A big welcome to our new contingent of followers from Queensland. It was great to send some T-shirts and hoodies up to Townsville and Brisbane recently. Were so excited to see our NF community expand all over Australia. All proceeds from the sale of our merchandise goes directly to research into effective treatments for Neurofibromatosis. To order a T-shirt or a Hoodie just send us a message or email us at [email protected]

07.01.2022 Last week, our friend Elizabeth Astbury, who was featured in a story on our page recently, was operated on at The Royal Melbourne Hospital, to remove a tumor from the top of her spine. Prof. Kate Drummond did an amazing job and the operation was a success. Elizabeth left hospital two days later with 20 staples and has now returned home. She is making an amazing recovery and is now busy preparing a wedding and will marry her partner Nick in May!

06.01.2022 Jack from MOR Motorsport is supporting Flicker of Hope in a unique way ... watch his video below to find out more. Jack has set up his own fundraising page via the Flicker of Hope GoFundraise page. All donations Jack receives are given directly to Flicker of Hope - making it easy for Jack to spread the world and help raise funds for NF medical research. He’s well on the way to reaching his $2500 target - thank you so much Jack for helping to shine a light on NF! Check out ...Jack’s fundraising page at https://makingadifference.gofundraise.com.au//Jack-74519968 Would you like to start your own fundraising campaign on behalf of Flicker of Hope? All funds raised go directly to NF medical research - FOH has no overhead or staff costs. Head to https://www.gofundraise.com.au/beneficiary/flickerofhope and click on ‘Start Fundraising’. Every dollar helps shine a Flicker of Hope!

06.01.2022 Chapter Two - Faye Isabelle Brokenshire Astbury On May 11, 1961, Alan and Dorothy Brokenshires second daughter Faye Isabelle was born....Continue reading

05.01.2022 PILOT PROGRAM FOR BLOOD PRESSURE RESEARCH Doctors from the The Royal Children's Hospital, Melbourne recently approached Flicker of Hope regarding a research project looking at blood pressure monitoring for children and adolescents with neurofibromatosis. As most of you know, patients with NF require regular monitoring and this has become difficult particularly in Victoria, due to most people being under lockdown and reduced to telehealth appointments. Telehealth does not all...ow for blood pressure monitoring and significant health issues have arisen in patients. We are looking at supplying some patients with at home monitors, so that data can be recorded and sent to the hospital. More details of the program will be available on our website soon. Meanwhile, the hospital needs 40 machines to make this project viable. A big thank you to Neville Williams and the OHS department at Delta Group, who have volunteered to take on fundraising for the project. We hope to update you on this project soon!

05.01.2022 Over 350 Flicker of Hope face masks have been sent all around Australia so far. To order a face mask or a hoodie contact us through Facebook or email us at [email protected] and help us spread a Flicker of Hope! Masks are available in Medium and Large for $18

05.01.2022 More research is needed to bring a flicker of hope for those with NF. Now that we have launched two exciting research projects, its time to set some new goals and we want to hear from you! Share your thoughts with us what area of research would you love to see us shine a light on? Lets dream big together! #NF #NF1 #NF2 #neurofibromatosis #flickerofhope #shiningalight

03.01.2022 Plenty of more good feedback coming in for our Flicker of Hope face masks. More masks are on their way around the country but its not too late to get your hands on some. Masks are available in Medium and Large for $18 each.... To purchase, just send us a message or email us at [email protected]

01.01.2022 MASKS Thanks to everyone thats contacted us to purchase a Flicker of Hope face mask! So far over 100 are on their way around Australia already. ... Feedback so far has been overwhelmingly positive. We can confidently say these are some of the most comfortable masks weve tried! If you want a Flicker of Hope mask for yourself, contact us through our facebook page or email [email protected] Available in medium and large. $18 each

01.01.2022 Thank you to all those who have been supporting our Shine a Light for Christmas Campaign. Our tree is looking great with 34 candles and 9 baubles. Candles are $20 and Baubles are $10.... Every single donation made will go toward a new research project. As promised, the first instalment of Santa’s Nice List has been posted. There is still space for many more decorations so anyone wanting to help please go to the link below. https://shineaflickerofhopethischristmas.gofundraise.com.au/