OUR FIRST PATIENT ENROLLED IN NORTH TRIAL January 2019
An exciting update from our researcher Dr Paul Wood
It is with much excitement that I can confirm that the first patient has been enrolled on the NORTH study. It is now open in eight hospitals around Australia and our second enrolment is expected this week.
Thank you once again to YAMS for ongoing support for this very important early phase clinical trial.
We are thrilled to announce the following from our researcher Dr Paul Wood
It is with great pleasure that I can announce that the NORTH trial, looking at the use of low dose Panobinostat in paediatric patients with neuroblatoma, osteosarcoma and malignant rhabdoid tumour is offically open in Australia.
This step represents the culmination of 2 years of hard work getting the trial protocol funded (via the NRMRC), approved by Human Ethics and finally adopted by the multiple paediatric sites around Australia. As far as I am aware, this is currently the only phase 11 study open to patients within Australia where alll of the pre-clinical laboratory work was performed in Australia.
YAMS Foundation is responsible for funding all of the neuroblastoma research and should be enormously proud of their contribution to date. Quite simply, this trial would not have been possible without the assistance of YAMS Foundaton and its supporters.
The pre-clinical evidence is strong and i am hopeful that thi trial will make a difference to the outcomes of children with high risk neuroblastoma.
YAMS FOUNDATION REACHES OUR $1,000,000 GOAL!!!
We are thrilled to announce that we reached our goal of $1,000,000 as the Official Charity of the Michelin Australian Motorcycle Grand Prix 2016. And what a weekend it was! The weather was atrocious on the Friday of the event and it poured all day. Saturday was a bit better and then Sunday, the sun came out. Our volunteers soldiered on regardless and we thank them sincerely for their hard work. We couldn't have done it without you. We sold 12,000 raffle tickets and the winners of all three prizes were delighted with their win.
We would like to take this opportunity to thank everyone who attended the event and who purchased raffle tickets and donated coins. As usual, your generosity is amazing. We have had such wonderful support over the past 5 years raising $420,000 from this wonderful event.
On behalf of our board, I would like to thank the Australian Grand Prix Corporation for their support and faith in YAMS Foundation. It has been an absolute pleasure working with everyone, and your support and encouragement has been part of our success. It has been a great partnership and we are eternally thankful for your support as we reached our $1M goal.
YAMS Foundation will continue raising funds to find a cure for neuroblastoma.
YAMS Foundation has been chosen as the Official Charity of the Michelin Australian Motorcycle Grand Prix 2016
We are delighted to announce that we are the Official Charity for the 5th consecutive year for the Australian Motorcycle Grand Prix which will be held at the Phillip Island Grand Prix Circuit October 21, 22 and 23. We are very grateful for the ongoing support of the Australian Grand Prix Corporation who continue to inspire and encourage. This year, we have been given this honour because it will allow us to reach our $1M goal. Follow this link to view the Network Ten interview today https://twitter.com/tennewsmelb/status/786101070925852673
Once again this year, we will run our major raffle. Tickets are $5 each or 6 for $20 and the prizes this year are:
1st Prize: Honda CBR1000RR Motorcyle valued at $17,499
2nd Prize: Draggin Jeans Outfit – Jeans, Hoody, T-shirt, Belt & Buckle, Cap, KSox, Armour and KGloves valued at $85
3rd Prize: Two (2) x Three (3) day Stoner Pavilion Grandstand Tickets to the 2017 Australian Motorcycle Grand Prix valued at $820.
We are very grateful to our sponsors of the raffle for their generous and ongoing support Honda Motorcycles, Draggin Jeans and the Australian Motorcycle Grand Prix.
If you are unable to attend the event, you can purchase tickets via our web page by following this link: http://yamsfoundation.org.au/?product=win-a-honda-cbr1000rr-just-5-a-ticket-or-6-for-20
Dr Paul Wood's Report from the ANR Conference
Paul presented his research at the recent Advances In Neuroblastoma Conference in Cairns. We asked him to write a short report about the latest research that was presented over the week.
The increasing use of FDG-PET scans is helping make treatment decisions. As patients are treated some of the previously aggressive neuroblastoma can become less aggressive ganglioneuroma. Ganglioneuroma is less likely to be positive on a PET scan. Therefore iftumour is positive on both MIBG and PET scan it is more likely to be aggressive than if it is positive on MIBG and negative on a PET scan.
As a follow on from this there are trials underway using a new type of PET scan using dopamine as the tracer. This is called FDOPA PET which may be an even better way of working out aggressive disease versus non-aggressive disease.
Plasma with circulating tumour material (fromblood test) easier to get than the tumour itself.
Can potentially makediagnosis and have early detection of relapses without an invasive biopsy.
The circulating genetic material hasshort half-life so needs to be processed efficiently.
At present GD2 and L1CAM are the most promising markers of neuroblastoma.
It is becoming clearer that when patients relapse, especially after treatment, the tumour has a different genetic profile than when it first presented. This is now pushing for a change in the way we treat patients. Previously we would not re-biopsy the tumour at relapse, however now there is an increasing need to consider re-biopsying tumours at relapse for genetic changes that may be treatable with newer drugs and other therapies. From a scientific standpoint it would also help us better understand the nature of relapsed disease.
The HR-SIOPEN (European) study identified the following factors as being bad for a patients’ prognosis;
Age > 18months.
Disease that has already spread.
MYCN amplification worse at earlier follow-up time-points but this becomes less relevant with time.
Age > 5 years.
A high serum ferritin and high serum LDH. This is something that we don’t often use but perhaps should.
The more metastatic sites at diagnosis the worse the outcome.
6q chromosome deletion (in the tumour) is potentially a new marker of high risk.
The risk of a secondary cancer (from cancer treatment) is about five times higher in a high-risk patient than an intermediate-risk patient.
If you are a high-risk patient, with MYCN amplification and relapse after treatment, the chance of cure is less than 5%. More research needs to be done for this group of patients.
Localised neuroblastoma; 5-year survival (without any disease) of 83% .
Patients can havelocal relapse of disease and still can be cured with more treatment.
Age of diagnosis (> 18 months), chromosome 1p changes and histology are important,
chromosomal 1p changes are NOT significantly associated with outcome.
We are now better understanding the way in which neuroblastomas become resistant to certain drugs, allowing us the test better drug combination. For example, it appears resistance to ALKinhibtors (ie Lorlatinib) is via the EGRF, SRC & BRAF signaling pathways.
The SIOPEN (European) group has validated rapid COJEC as the induction therapy of choice in high-risk neuroblastoma. This is important as many sites in Australia may be opening this study soon.
DFMO is being investigated as a maintenance type therapy in a select group of neuroblastoma patients with some early promising results. It is given towards the end of treatment. It is too soon to really know how this treatment will affect the outcome of all high-risk patients.
There is a potential change in the way the USA will be doing their consolidation therapy (high-dose treatment with stem cell return). The results of the ANBL0532 trial suggests two, consecutive tandem transplants are better than one transplant in high-risk patients. However, the tandem transplant from ANBL0532 has not been compared to the single European transplant that is currently considered standard of care. There is still more research that needs to be done in this area.
There are lots of new drugs and therapies in the pipeline that show very exciting, early pre-clinical results such as newer BET bromodomain inhibitors and EZH2 inhibitors…..stay tuned.
Perhaps the most exciting, evolving area of research is the use of CAR T-cells in the treatment of cancer. These are modified human T-cells programmed to target cancer cells. The have been used with success in liquid tumours such as leukaemia. Researchers are trying to figure out how they can be programmed to target neuroblastoma as well as other solid tumours.
Immunotherapy continues to be investigated and improved as an adjunct to currents treatment both in up-front disease and more recently in relapsed disease. It is now considered standard care in first line treatment of high-risk disease. Its role in relapsed disease is less clear.
There are many ongoing trials for patients with relapsed disease with no clear stand-out protocol showing significantly better salvage rates to date.
YAMS Foundation research to be presented at the ANR Conference in Cairns
Very exciting news. Once again we have been short-listed for an award. This time however it is an oral presentation which is even more prestigious. This presentation is at the Advances in Neuroblastoma Research Congress to be held in Cairns in June 2016. Remember this conference represents the best WORLDWIDE research in neuroblastoma in the last 2 years so it is an excellent indication of the quality of our research. Hopefully we win this year
We have 3 very happy winners
1st prize: Honda CBR1000RRR Value $17,499 – Jared Bouwer from WA. Ticket No: 8821
2nd prize: Draggin Outfit Value $850 – Jonah Cottrell from Vic. Ticket No. 6144
3rd prize: 2 x 3 day Stoner Pavilion Grandstand Tickets to 2016 Australian Motorcycle Grand Prix – Glen Mikesic from Vic. Ticket No: 3727
These lucky winners were all thrilled with their win. Pictured is the winner of the Honda CBR1000RR Jared Bouwer with YAMS Foundation chairperson, Jude Donahoo.
Sincere thanks to Honda Motorcycles, Draggin and the Australian Motorcycle Grand Prix for their assistance with these great prizes.
YAMS Foundation honoured with fourth consecutive year as official charity
We are thrilled to have been chosen as the Official Charity for the 2015 Pramac Australian Motorcycle “We are embarking on a race to raise $1 million to go towards research for neuroblastoma and the event plays a crucial role in helping us achieve this goal” said Jude Donahoo, chairperson of YAMS Foundation.
This year, Australia’s MotoGP rising star, Jack Miller, has been named the You Are My Sunshine (YAMS) charity ambassador. Miller, an active contributor to the cause, said he is “stoked” to be part of the YAMS team this year. “At the event last year I saw how much work the YAMS team were putting in for the fight against neuroblastoma so I was thrilled when asked to be their ‘patron saint’ this year,” Miller said.
Australian Grand Prix Corporation CEO, Andrew Westacott, is delighted with the event’s dedication to the local community and the YAMS foundation.
“We’re thrilled to continue our support of YAMS and the work Jude and her team do. It’s a worthwhile local charity which helps make a difference to young children that are affected by neuroblastoma, Westacott said.”
Together with YAMS, the Australian Grand Prix Corporation encourage all race-goers to visit the GP Expo at the 2015 Pramac Australian Motorcycle Grand Prix and purchase a $5 ticket to win a Honda CBR1000RR and give hope to children suffering from neuroblastoma.
Welcome to our newest ambassador
We are very excited to welcome our latest ambassador Michael Thwaite, captain of Perth Glory Football Club. We couldn't think of a better person to introduce him to all our supporters than NB fighter Rafael, who is our #1 all round football expert. Rafa was thrilled to receive a signed sweater from Michael, as you will see from his infectious smile.
Michael and his wife Chantelle have 2 beautiful little girls. Chantelle is a sonographer and her passion lies within paediatric oncology, having worked with these little kids all too often.
Please welcome Michael and Chantelle aboard as we all strive to find a cure.
Archie shaves his hair and raises 4,433.70
9 year old Archie shaved his head on the last day of first term with incredible courage while all of his school mates cheered him on. He also easily reached his goal and raised $4,433!!! His dedication and passion over the last 12 months is incredible in such a young little fella. It was a big build up to a big event. Well done Archie, you are amazing! The retiring Art Teacher also joined him and shaved his head too. Thanks Mr G, you're a legend! Thanks to the Junior School Council, Monica Griffiths, Rohan Thompson and Di Double for their support at Tecoma Primary School too, what a fine school it is. And…. this one's for you Kahlilla. xxx
YAMS Foundation Charity Golf Days raise $42,000
Our 6th Annual Charity Golf Day, held on Friday March 20 and sponsored by the RSL Phillip Island raised a further $5,500 bringing the total raised from this annual event to $42,000.
Golfers enjoyed a light lunch before heading out for a fun filled Ambrose Event. The skies opened up with heavy rain early in the day but cleared as the golfers arrived and the sun shone all day. Everyone returned at the end of their 18 holes and enjoyed a sausage sizzle. Thank you everyone who supported our event. This includes our hole and prize sponsors, and donors of items for our silent auction. Special thanks again to Tahlia from Baker's Delight and Ted from Island Primary Produce for their ongoing support with bread and sausages.
Our sincere thanks to the RSL Phillip Island who was our major sponsor and to our wonderful volunteers who helped with the catering on the day. We couldn't have achieved this result without you all.
The winning teams are: 1st Prize – Team NAB. 2nd Prize – Team Peter Mac. 3rd Prize – The Breakfast Club
World Superbike Championships raised $20,000 for research
As the official charity for the World Superbike Championships on Phillip Island, we raised $20,000. Our volunteers worked tirelessly in the hot weather selling raffle tickets and rattling buckets and we are so grateful for all their hard work. Our raffle winners were thrilled with their prizes with first prize going to a visitor from the UK, second prize to a visitor from South Australia and third prize to a lady in San Remo.
Sincere thanks to the Phillip Island Grand Prix Circuit for choosing YAMS Foundation as the official charity.
The picture shows our volunteers having some fun at the end of a very hot hard weekend of fundraising.
Yams Foundation is the Official Charity for the 2015 Superbike World Championships on Phillip Island – the heat is on
It's official, YAMS Foundation is the Charity for this great event. Our ambassador for the event is Australasian Superbike Champion Wayne Maxwell. Wayne is pictured with our patron, Matt Le Nevez at the 2014 MotoGP.
It's February, it's summer and the Superbike World Championship is on again at the iconic Phillip Island Grand Prix Circuit. It really is a ferocious contest with back to back racing in the various classes. Don't miss out on all the action and drop by the expo and say hi and buy a raffle ticket for $5 or 5 for $20. We have fantastic prizes just being finalised but you can't miss out!!
There are some great ticket packages ranging from general admission to fantastic packages. Click here for more information
Our heartfelt thanks to the management of the Phillip Island Circuit for choosing YAMS. You can't miss our friendly volunteers in their hot pink vests and yellow buckets. They will be rattling buckets and selling raffle tickets at the gates and around the circuit. Please give generously and help us extend the lives of little kids diagnosed with neuroblastoma.
Beautiful Paris, an NB survivor, raises $11,402.96
What a fantastic effort by Paris. She raised $6,510.41 through her Everyday Hero page and $4892.55 at the $2 table in Cowes between Christmas and New Year. We think she looks just gorgeous, and believe me, this unpretentious 17 year old is just gorgeous, inside and out. We are richer from our experience working with Paris and thank her sincerely for raising so much money for our research program. Paris says “I had this cancer, so I can relate to the cause. I survived, so I have always felt like I owe someone for that. What better way to give back than to help fund research into better treatment for those who suffer from neuroblastoma. Every child should be able to grow up and experience all the things life has to offer, so I want to try and give kids a better chance to fight back against the life snatcher that is neuroblastoma. It is such a cruel beast because it preys on those who have experienced such a small portion of life’s adventures".
Sincere thanks to David & Annette of Cowes Newsagency for allowing us to fundraise outside their business, Darren George Hair for shaving Paris' hair, all the volunteers who worked tirelessly over the past 5 days and to all those generous people who donated. The winners are our little NB kids who we are trying to save
Paris is a neuroblastoma survivor and shaves her beautiful hair for YAMS
Paris – goes – bald!! This is Phillip Island's Paris Wynen, who was diagnosed with neuroblastoma at just 2 years of age. She was diagnosed early and is a SURVIVOR!! This gorgeous girl now wants to shave her beautiful blonde locks to raise $$ for research so that other little kids, just like her, can have a chance at life. PLEASE PLEASE support Paris by donating, big or small, it doesn't matter, and help her reach her goal. Please spread the word. Her beautiful locks will go at Christmas on Phillip Island. This is so special. More pics during treatment to follow.
Click here to donate now
BARRY SHEENE PINS AND PATCHES AVAILABLE ON-LINE
Any Barry Sheene Tribute Ride enthusiasts who missed out on the 2014 Pins and Patches can purchase them on-line by clicking here. They are $5 each and they will be posted to you.
AWESOME RESULT SO FAR – TOTAL RAISED FROM MOTOGP IS $79020 AND RISING!!!
We are thrilled with our fundraising efforts at this year's 2014 Tissot Australian Motorcycle Grand Prix. YAMS Foundation volunteers have so far raised $70,519 from the sale of raffle tickets, Barry Sheene pins and patches and the charity auction at Bairnsdale and donations from the wonderful generous bikers and patrons of the event.
Our heartfelt thanks to Honda Australia for donating the Honda CBR500R motorcycle, Freestyle Honda Motorcycles for the Riders Gear, Australian Grand Prix Corporation for the 3 day Stoner Pavilion passes to the 2015 Motorcycle Grand Prix and Kiddomoto for the Marx Marquez child's balance bike. Without your generous support, we couldn't have achieved this outstanding result.
Despite his busy filming schedule, Patron Mat Le Nevez was busy rattling tins and selling raffle tickets. Thanks Matt for your support and passion to help us find a cure. He is pictured with 2012 Ambassador, reigning Australian Superbike Champion Wayne Maxwell.
The Barry Sheene themed Suzuki Motorcycle being auctioned via an on-line auction by Swann Insurance will add to our amazing total and is already at $8,501 with 3 days to go. To bid or check out the action, click here
YAMS Foundation is the Official Charity for the 2014 Tissot Australian Motorcycle Grand Prix
We are thrilled to announce that we have been chosen as the Official Charity for the 2014 Motorcycle Grand Prix which will be held at the Phillip Island Circuit from Friday October 17 – Sunday October 19. Our sincere thanks to the Australian Grand Prix Corporation for giving us the opportunity to raise much needed funds for our research program again this year. Over the past 2 years, we have raised $200,000 from this event and every dollar raised has gone to our research program.
Our major fundraiser will be a raffle. Honda Australia Motorcycles has again donated a fabulous Honda CBR500R motorcycle as first prize, valued at $7990. Second prize is a Leather Jacket, Boots and Gloves valued at $1000, donated by Freestyle Honda Motorcycles, third prize is 2 x 3 day Stoner Pavilion Tickets valued at $780 to the 2015 Australian Motorcycle Grand Prix, donated by the Australian Grand Prix Corporation and fourth prize is a Kiddomoto (Marc Marquez) Childs Balance Bike valued at $210, donated by Kiddomoto Australia. Thank you to all of these companies for their generous donation. Tickets can be purchased at the Australian Motorcycle Grand Prix, Barry Sheene Dinner and Charity Auction in Bairnsdale or you can email us email@example.com for information on how to purchase tickets on-line.
We will also be selling 2014 Barry Sheene pins and patches at the Barry Sheene Dinner on Wednesday October 15 and also the following morning prior to the Barry Sheene Memorial Ride to the circuit on the Thursday. These will also be available at our stand in the GP Expo. Please email us if you are unable to make the event this year as you can purchase your order on-line.
The Australian Grand Prix Corporation announced that Bass Coast Shire residents will get free admission to Day 1 of the 2014 MotoGP by simply making a gold coin donation to the YAMS Foundation. YAMS volunteers will be at the gates in their bright pink vests to collect the gold coin donations.
YAMS Foundation patron Matt Le Nevez will be at the GP Expo on the Saturday and Sunday selling raffle tickets and rattling buckets for donations. Likewise our friendly volunteers will be at the gates as patrons arrive, and will also be busy around the circuit selling raffle tickets and shaking buckets.
Swann Insurance one-off special edition Suzuki GSX-R600 to be auctioned for YAMS Foundation
In 2013, Swann Insurance created a one-off special edition Suzuki GSX-R600, which was emblazoned with illustrations of images, quotes and memories of Barry Sheene from the Swann Insurance Facebook community. The memorial bike is being auctioned off this year, with all proceeds going to the You Are My Sunshine (YAMS) Foundation. To learn how you can bid for this bike, click here.
We are very grateful for the ongoing support of the Swann Insurance Group who has raised $34,442 for our research program over the past 2 years.
Yellow Brick Road Fundraiser raises $815
We were thrilled to receive $615 which was the proceeds of the Sausage Sizzle Fundraiser held in Logan Park Altona in August. The team at Yellow Brick Road Altona did a great job and we are very pleased that they chose YAMS Foundation as the recipient of their fundraiser. YBR Dandenong, Camberwell and Ballarat contributed a further $200 bring the total raised to $815. Our sincere thanks to all.
Our Inspiration ….. 18/3/2003 – 25/8/2008
Our little dancer, Kahlilla Blyss Donahoo ….. YAMS Foundation is her legecy and her light continues to shine every day. But today is the anniversary of the day she left us. Whilst she is now free from all the suffering, we miss her every single day. She was only 2 years old when diagnosed, and despite 3 years of treatment, neuroblastoma won. This is why we continue telling stories of our little NB kids, and always trying to raise funds for our research. We don't want other families to go through the hell that is a diagnosis of neuroblastoma. Today there is hope, hope of a cure and this is what we strive for.
May Kahlilla's beautiful memory live on in all that we do, and all that we are. Please consider a donation in her memory today.
International Neuroblastoma Awareness Week June 9 – 15, 2014
Patron Matt catches up with Rafael before our NB superhero heads off to Brazil
Everyone who has followed Rafael Moraes' story will be thrilled to hear that he is heading off to the World Cup in Brazil. Rafa has been going through active treatment for NB of the past 5 years and this has been one of his greatest wishes. We are thrilled that he is living his dream and wish Rafael, Tash, Dom and Gabriella a wonderful, safe and memorable trip. Our Patron Matt managed to catch up with Rafael and Tash in Sydney just before they headed off.
“You don’t hate me do you?”
I was shocked by the question.
“No way! You and the people here saved my life!”Did this gentle man really think that the children he’d operated on had gone through life hating him? I have been very moved by this thought and am grateful that last night I had the opportunity to assure him otherwise.
Last night was surreal, but wonderful. Nearly 200 people attended the retirement dinner for Dr Karin Tiedemann and Dr Keith Waters, who between them have served 77 years as oncologists in the Children’s Cancer Centre / Haem-Onc Department, at The Royal Children’s Hospital (RCH) in Melbourne. It is the end of an era. The speeches told of the days through the 70’s when most children with cancer died. We heard how Dr Waters was instrumental in designing and driving the first clinical protocols at the hospital for treatment of children with acute leukaemia, and the refinement and development of these over the years, both at the national and international level, such that most children diagnosed with leukaemia these days survive. We heard how Dr Tiedemann was sent to the library to learn how to perform a bone marrow transplant and then pioneered and established a bone marrow transplant program at the RCH. She was pivotal in creating a cord blood bank at the RCH and has performed hundreds of bone marrow and cord blood transplants for children with leukaemia and other blood disorders. Between them, Drs Tiedemann and Waters have saved the lives of hundreds, if not thousands, of children. I’m one of them.
At the dinner last night were the three oncologists who together oversaw my treatment for osteosarcoma, a highly malignant form of bone cancer. Diagnosed on the eve of 1980, at the age of 15, the only form of treatment for such an aggressive type of cancer was an amputation followed by 18 months of high-dose chemotherapy. The introduction of chemotherapy several years prior to this had seen the survival rate for this type of cancer jump from 5% to 60%. I underwent an above-knee amputation of my left leg on January 2nd 1980 and a few days later commenced the first of twenty-something cycles of chemotherapy. Dr Waters, Dr Tiedemann and Dr Henry Ekert were my doctors, overseeing all aspects of my treatment. Thirty-four years later, at this beautiful dinner, I was reminded how privileged I am to have been treated by the best.
Also at the dinner were two of my amazing nurses, Mary McGowan and Dave Sutton, both of whom have different roles now within the hospital, but are still there. Throughout the many months on the cancer ward they brightened my days and joked with me and made me feel I was amongst family.
Between courses at the dinner I overheard someone say, “There’s Bob Dickens”. I looked and sure enough, there was the surgeon who had performed my amputation 34 years ago! I had not seen him for well over 30 years. I chased after him and started to introduce myself and he said “You’re Ngaire! Wow, this is amazing”. He asked after my parents, and especially my mother, who had obviously made quite an impression as he dealt her the blow of removing the leg of her sporty, active teenage daughter. He reminded me of the poem I had written shortly after my amputation describing the phantom pain; a poem which Dr Ekert submitted to the Medical Journal of Australia – my first scientific publication at the age of 15! This incredible surgeon appeared so humble and insisted on a photo and, as we both fumbled around with our smart phones in sub-optimal light, asked me all about myself. He seemed delighted to hear about my three boys and the life I’ve had, and the fact that I work at the RCH as Director of the very cord blood bank that Dr Tiedemann helped to establish during the 90’s. As the main course was served and our animated conversation drew to a close he said, “You don’t hate me do you?” My immediate reply; “No way! You and the people here saved my life!” His question played through my mind on the long moonlit drive home.
How could I feel anything but gratitude for he and the other staff who treated and cared for me those many years ago? They saved my life. Of course it was traumatic, and hard and an experience that no child or adult wants to have, but it is thanks to them that I am still here. I’m having an amazing life. I’ve travelled extensively, I’ve married and have three children, I’m loved and have an enormous network of family and friends whom I love in return, I live in a beautiful part of the world, I’ve studied and worked and have a career that makes a difference and brings personal satisfaction. What more could anyone wish for in life? Ok, so I’ve had a bit of breast cancer recently, but how fortunate am I to have lived long enough to develop a second type of cancer. So, NO, Mr Dickens, I do not hate you or your colleagues who have devoted their lives to curing children of their cancer. My heart is full to bursting with gratitude and love for the surgeons, oncologists, nurses and allied health staff at the RCH who are part of my life story. Thank you.
– Dr Ngaire Elwood
Ngaire is Director of the BMDI Cord Blood Bank and Head of the Cord Blood Stem Cell Research Program, Early Disease and Development.
This piece was originally published on Ngaire’s blog Things I Have Learnt Today
World Cancer Day – February 4, 2014
Imagine a world without cancer.
YAMS Foundation and Neuroblastoma Australia share pics on Neuroblastoma Awareness Day.
Neurblastoma Awareness Day was a time for celebration of life for some families and for others, a day to remember their precious angels who lost the fight. Neuroblastoma Australia's logo is the beautiful frangapani and many friends posted pictures featuring their children and the frangapani. In Melbourne, in the absence of the beautiful frangapani, we all shared the sunshine!! However, as long as we all helped raise awareness, we will have achieved our goal. Too many little children are dying from this insidious disease, that is why we all do what we do.
National Neuroblastoma Awareness Day
Sunday February 4 is National Neuroblastoma Day. This year we are joining Neuroblastoma Australia in remembering this day together and raising awareness. We chose 2nd February because 2 is the average of diagnosis and 2 little is being done for our kids!!
We would love everyone to help create some awareness by wearing a frangapani (the logo of Neuroblastoma Australia) or by just Sharing the Sunshine (YAMS Foundation theme). How about face painting, having a picnic in the sun, making some frangapani cupcakes. Let's hope that one day, it won't exist at all.
Sick children the real winners of the Moto GP at Phillip Island
“This is an amazing result for You Are My Sunshine Foundation. Every dollar raised will go to research because the foundation is wholly run by volunteers. Medical research is expensive, and this will go a long way to pay for our research program which is dedicated to finding a cure for neuroblastoma.:”
“There are so many people we must thank. We couldn’t have done this without our many volunteers at the track, thank you for all your hard work. A huge thank you to Honda Australia Motorcycles and Monza Imports who generously donated the prizes for the raffle; our Patron Matt Le Nevez (Dr Patrick from ‘Offspring’), Spokes/TAC, Swann Insurance, CGU, the many organisations who donated items for our charity auctions, and last but not the least, the Australian Grand Prix Corporation, who appointed You Are My Sunshine Foundation the Official Charity of the Tissot 2013 Australian Motorcycle Grand Prix.”
Honda Motorcycles has donated a fantastic CBR500R for our 2013 MotoGP Raffle
We absolutely thrilled to announce that Honda has donated a motorcycle for our raffle at the upcoming Australian Motorcycle Grand Prix. This very generous donation is a huge boost to our fundraising for the event. Patrons can visit our stand in the GP Expo to see this sleek black motorcycle and purchase a ticket for $5, or 5 for $20. The winner will be announced on the Sunday of the event.
Special thanks to Archibald Winning Artist Vincent Fantauzzo
Sincere thanks to the very talented Vincent Fantauzzo for donating the Kimbra sketch to help us raise more funds for our research program. The on-line auction, which ran via YAMS Facebook page over the weekend of the MotorGP, raised $2,100. Vincent is pictured handing the work to the very happy purchaser Mark.
You can see more of Vincent’s work by visiting his web page www.vincentfantauzzo.com.
Meet our Patron – Aussie Actor Matt Le Nevez
Matt Le Nevez has accepted our invitation to become our Patron and is committed to raising the profile of our foundation and awareness of neuroblastoma. Welcome to our fight Matt, we are thrilled to have you on board!
Matt met 9 year old neuroblastoma fighter Rafael Moraes recently at Peter Mac Cancer Centre in Melbourne and saw first-hand the devastation this disease can have on our little kids. He has been personally touched by neuroblastoma with children of close friends being diagnosed with neuroblastoma. Matt says “this is only the beginning, we’re not stopping till we find a cure”. That is music to our ears.
Although presently based in LA, Matt’s acting career will see him spending time in Australia with him returning in early October for further filming.
Matt will join us at the MotoGP in October and says “I will be down at the Grand Prix in October doing everything I can to help”. Visitors will be able to drop by the GP Expo to say hi and buy some raffle tickets from Matt.
Gold Coin Table
A few dedicated volunteers spent Easter Saturday raising funds at our Gold Coin Table outside the Cowes Newsagency. Thanks to the generosity of visitors to Phillip Island and locals over the Easter break, we raised $1045.00. Special thanks to our volunteers for the day, Kayleen, Tom, Pat, Hayley, Anna, Leanne & Colin for their hard work. Thank you also to Annette and David from Cowes Newsagency for allowing us to fundraise outside their business.
YAMS Foundation Annual Golf Day reaches $29,300 over 4 years
The Phillip Island Golf Course was bathed in sunshine as golfers teed off for a fun filled game of golf on Friday April 5.
The annual golf day hosted by FKP Property Group has now raised $20,300!! YAMS Foundation was also the recipient of Stockdale & Leggo’s 2010 Golf Day which raised $9000, a total over the 4 years of $29,300. We are very grateful for the ongoing support of FKP Property Group and are pleased to announce that they will be our major sponsor for again for 2014.
Aussie golfing legend Mike Clayton challenged players to beat the pro on the 7th hole. Needless to say, Mike’s drive was hard to beat and YAMS Foundation came out the winner with only a couple of players being able to double their money.
“We are delighted that this day has become an annual event on Phillip Island and look forward to its continued popularity amongst locals and visitors alike” Jude Donahoo, chairperson of the foundation said. “What better way to spend a day than to start with some yummy gourmet sandwiches, 18 rounds of golf with your mates and a sausage sizzle with the best local sausages on the Island.
“Special thanks to Island Primary Produce and Bakers Delight for their ongoing support with our catering together with all the other businesses who donated prizes for our raffle. We couldn’t do it without your support. We could not have achieved this result without the support of the Phillip Island Golf Club and Marcus and his team at the Pro Shop. Our sincere thanks to you all.
You Are My Sunshine Foundation is the legacy of Phillip Island’s Kahlilla Donahoo who died at just 5 years of age from neuroblastoma, a deadly and aggressive childhood cancer. “We are committed to raising funds to support neuroblastoma research with the goal of finding a cure. Our Foundation is run entirely by dedicated volunteers so 100 percent of all funds raised goes to our research program”, Jude said.
“50 years ago, children diagnosed with the most common leukaemia, Acute Lymphoblastic Leukaemia (ALL) were given little chance of survival. Through targeted research, these children now have a 90 – 95% chance at survival. We want this same chance at life for our neuroblastoma kids, and this will only be achieved through research.
We have a tentative booking for YAMS Foundation’s 2014 golf day for Friday February 14, 2014 and are awaiting confirmation in the next week or so, so stay tuned. In the meantime, we are seeking sponsors for the 18 holes. Sponsorship is $500 and includes registration for a team of 4. “Please consider sponsoring a hole in 2014. The only way that we will find a cure for these beautiful little kids is through research, and research is very expensive” Jude said. For further information please email us at firstname.lastname@example.org.
Phillip Island is the home of You Are My Sunshine Foundation and we are very proud of our achievements. Please help us find a cure!
Offical Charity of the AirAsia Australian Motorcycle Grand Prix
As the official charity of the 2012 AirAsia Australian Motorcycle Grand Prix, we raised in excess of $110,000, thanks to the generosity of the patrons of this fabulous event. What is even better is that every cent raised will go towards funding up to 12 months of crucial research into finding a cure for neuroblastoma.
We are absolutely overwhelmed by the support and kindness of everyone involved with this year’s event. The generosity of the 2012 AirAsia Australian Motorcycle event-goers was just amazing; their support has been very touching. Not only did the estimated record crowd of 122,470 patrons enjoy all the on and off track action, but they also gave generously and donated the largest amount of money ever raised by an official charity during the event.
Special mention must go to our Ambassador, Australian Superbike rider Wayne Maxwell who worked so hard to help us raise awareness of neuroblastoma, and raise so much money. Congratulations to Wayne on his achievement of being 1st overall in the Superbike/Superstock1000 class. What an exciting rider to watch, you had us all on the edge of our seats. All class is all we can say Wayne and well done!
We could not have achieved this outcome without the assistance of Freestyle Honda in Seaford who generously sponsored the Honda CBR 250R for our raffle! Thanks so much to Jason Newton and his team at Freestyle Honda and congratulations to Phillip Island’s James Patton, winner of this great little bike!
To all our wonderful volunteers who worked tirelessly rattling buckets, selling raffle tickets and Barry Sheene pins and badges, our heartfelt thanks!! This was such a huge task and we thank each and every one of our volunteers for their hard work. You can be very proud of your achievements.
There are so many people who contributed in many ways over the 5 days of the event and we thank them all. These include Swann Insurance, Ray Pobjoy and the Norton Owners Club who ran the Classics Cowes 2012, Jarrod Hauser who cut his dreadlocks on stage, and all who attended the Barry Sheene 10th Anniversary dinner and auction at Bairnsdale.
Last but not least. The wonderful team at the Australian Grand Prix Corporation led by Andrew Westacott. What a machine you are!! Thanks so much for the opportunity to be the official charity for this year’s biggest event ever! We are so proud to have been part of this, and the winners are the beautiful little neuroblastoma kids we are desperately trying to save.
You Are My Sunshine to rise at Phillip Island
We are extremely grateful to the Australian Grand Prix Corporation for appointing us as the official charity for the 2012 AirAsia Australian Motorcycle Grand Prix this October. It presents us with an unprecedented opportunity to raise awareness and funds for Neuroblastoma research and we look forward to being a part of what could be the biggest Australian Motorcycle Grand Prix ever.
CEO of the Australian Grand Prix Corporation, Andrew Westacott, is pleased to be able to partner with such a worthy charity at the 2012 AirAsia Australian Motorcycle Grand Prix. "We are extremely proud to be able to support this Phillip Island based charity You Are My Sunshine Foundation,” he said today. “We encourage fans to get behind this worthy cause and donate what they can,” he added.
With just over two months to go until the Australian round of the World Championship, Aussie hero Casey Stoner’s retirement announcement in May has generated unprecedented ticket sales this the year.
Your Chance to Win a Honda CBR250R
We are thrilled to announce that Freestyle Honda in Seaford, Victoria, has very generously donated a Honda CBR250R motorcycle valued at $6490 as the major prize for our raffle. Visit us in the bikesales.com.au GP Expo, buy a raffle ticket for $5 and this bike could be yours!! Second prize is Two (2) Three (3) day Gardener Grandstand Tickets valued at $770 to the 2013 Australian Motorcycle Grand Prix, October 2013. Our sincere thanks to both Freestyle Honda and the Australian Grand Prix Corporation for their generosity.
Visit us in the bikesales.com.auGP Expo and meet Wayne Maxwell, Australian Superbike Rider.
10th Anniversary Barry Sheene Pins and Badges – Don’t miss out ……. Visit us at the GP Expo to secure this special edition badge and pin.
FKP Annual Charity Golf Day raises $9,300 for research
Our annual FKP Charity Golf Day was held on Friday March 23 at the Phillip Island Golf Course. Despite the weather forecast which predicted rain, hail, lightning and gale force winds, 110 very brave participants arrived for a light lunch and briefing before facing the elements.
There were gale force winds and a few rain squalls during the afternoon, but the sun also shone brightly. Everyone totally enjoyed their day of golf and just as the last golfers returned to the clubhouse, the heavens opened with rain, thunder and lightning. A sausage sizzle at the end of the day capped off an excellent event.
Aussie legend Mike Clayton braved the 7th hole and had a hit with those who dared to test their skills against his. Special thanks must go to Mike for his contribution to the success of our day. We raised $550 on the 7th hole!!!
We would like to thank all our sponsors for the day. FKP Property Group was our major sponsor and we are grateful for their ongoing support. Thank you to Colin Greaves and FKP for sponsoring this special day for the second year in a row, and we look forward to your continued support.
Thanks to the hole sponsors and those that donated prizes: Ringwood Mazda, Undergound Pump Supplies, Auto-Fab, Lincoln Specialty Chemicals, Mattioli Bros, Xylem Water Solutions, Melbourne Brick Co, PR 4 PR, Ensign Laboratories, Le Tan, Cedal, Priminent Fluid, Cost Less Bolts, Hot & Healthy Personal Training, Yarra Bend Golf, Island Primary Produce, Bakers Delight and Creative Visuals. Thank you also to Westernport Water for the drink bottles and water cart.
Fun & Laughter at The Comic’s Lounge
The Comic’s Lounge in North Melbourne hosted a fundraiser for us on April 28, and what it night it was! There was never a dull moment as the stand-up comedians Marty Fields, Lehmo and Jacques Barrett rattled off their lines much to the delight of the audience.
We all had a great night and raised $2,300 with ticket sales and a raffle. To all at The Comics Lounge, THANKS GUYS!!!
Team Bodie’s fundraising reaches over $20,000
The amazing fundraisers that are Team Bodie have now raised $20,237 for our Foundation. Special thanks to Michelle Doherty and her team of dedicated workers for their tireless efforts in raising funds for research. Together we will make a difference.
Bodie was diagnosed with neuroblastoma in 2011 and has undergone intensive treatment over the past 3 months. We are so pleased to hear that our little warrior is doing so well and our thoughts and prayers are with Bodie and his family. You can follow Bodie’s journey with neuroblastoma on Facebook Little Warrior’s Journey.
Geoff & Juli Ogilvy Charity Golf Day raises over $106,000!!!
The Victoria Golf Club was the perfect venue for the Ogilvy Charity Golf Day on Monday November 21.
The sun shone down as golfers arrived for a pre golf lunch, golf, pre-dinner drinks and a scrumptious dinner provided by the Victoria Golf Club. The MC for the evening was the very talented and funny Marty Fields who kept us on our toes with his quick wit. The event was supported by very generous sponsors who donated some great auction items that raised an amazing $43,450. We are very grateful for their generosity and support.
Many in the audience shed a tear as Juli Ogilvy emotionally shared her experience with their little friend Ava Holder who has neuroblastoma. Ava has now relapsed for the third time and her prognosis is very poor. Juli aptly described the emotional burden that this disease places on these children and their families.
We are very happy to announce that Geoff Ogilvy has accepted our invitation to become an Ambassador for YAMS Foundation. Geoff and Juli share our determination to fund research to find a cure for this horrible disease. Thanks so much to Geoff & Juli for choosing YAMS Foundation as the beneficiary of this star studded event and our heartfelt thanks for your generous donation. Together we will make a difference.
Share the Sunshine Day – A HUGE THANKYOU to everyone
The wonderful team that is Inverloch & District Lions promoted “Share the Sunshine Week” culminating in a BBQ at Inverloch on Saturday August 20. The beautiful weather added to the colour of the day.
Lions were supported by many local businesses that displayed our banner, sold colourful wrist bands and accepted donations.
We were delighted with the fantastic support from Karen Lees and all involved from the Victorian Desalination Plant. Thiess Degremont who donated $5,000, the O & M Team of individual desal workers who donated $4,338.80 and the Plumbers Union for their generous donation of $2,000.
On behalf of all these little kids who are suffering from neuroblastoma ……. THANKYOU for your hard work and generosity.
Ribbons for Ruby’s total continues to grow!
A huge thank you to Ribbons for Ruby who donated a further $2000 last month. This brings the total raised by Griffin and his team, including Sophie’s Shave Day to honour Ruby, to the amazing amount of $30,431.
WELL DONE EVERYONE and a HUGE THANKYOU.
Special thanks to Inverloch & District Lions
We were invited as guests to the Lions Club of Inverloch & District’s 10th Anniversary Changeover Dinner on June 3rd. We were thrilled to walk into the venue and see it decorated with YAMS Foundation banners all over the walls. This wonderful club has been so supportive of our Foundation and we are truly thankful for their commitment to help us find a cure.
We were delighted that our researcher, Dr Paul Wood was able to join us. Paul spoke about his research and the importance of funding to enable him to continue his research.
Representatives from other clubs in District 201V3 also attended and we appreciated the opportunity to meet them and share our vision of finding a cure for neuroblastoma.
Lion’s motto is “We Serve”. You are an inspiration, each and every one of you. We are so grateful for your ongoing support for YAMS Foundation.
Wow $15,000!!! CONGRATULATIONS Sophie, you reached your goal
Family and close friends gathered to watch Sophie shave her beautiful auburn hair. Her friends plaited small lengths of hair and cut them as a keepsake before her brother Sam shaved it to a number 1. Sophie looked as beautiful as ever with no hair. To all who supported Sophie, our heartfelt thanks for your generosity.
To Sophie, your love of Ruby is obvious and commitment to help us find a cure is truly appreciated.
Powderfinger signed Maton guitar auction raises $12,000!!!!!!
A HUGE thankyou to Powder Finger, Triple M, Maton Guitars and the lucky winner!!!
What an amazing effort. Thankyou for caring.
Melbourne Marathon Sunday October 1
With the support of Westernport Water, six friends of YAMS Foundation took part in the Melbourne Marathon. The team of five local athletes is Abigail Adams of Westernport Water, Elaine Ferteis from Island Healing, Jenny Hibble from the Phillip Island Vets, Bill Playne a year 9 teacher from Newhaven College and Gary Ferteis from the Clontarf Foundation, ran this year’s St George Melbourne Marathon with a distance of 42.195Km. Final figures are not known at this stage but an amazing amount of about $5000 was raised. Thank you to the wonderful people who took part in the Marathon and to all those who sponsored their effort
$$ Gold Coin Table – MotoGP Weekend – October 15 and 16
Despite the rain, hail and fierce wind, the visitors and locals generously donated to our Gold Coin Table. By 4.45pm on the Saturday, our mission was complete and our table full of $1 and $2 coins.
We raised $2917.
Thanks once again to all who contributed to such a successful fundraiser.
Homemade YAMS Yummies Stall – October 9
Several ladies from the senior citizens group of Phillip Island spent many hours making a variety of handmade knitted and crocheted garments and donated them to YAMS. They also spent a day baking some yummy yo-yo’s and rum balls and bagged them ready for sale. It didn’t take long until we had sold all our fresh produce and much of the other items and we thank all who supported YAMS Foundation. We raised $525 on the day. Sincere thanks to all who donated goods and participated on the day.
Newhaven College Trivia Night
The senior students of Newhaven College arranged and ran a fantastic Trivia Night on Saturday August 28. Approximately 150 participants thoroughly enjoyed the evening which included various categories of questions which left many of us scratching our heads and digging deep into the past for answers. For those who could afford it, teams could even purchase the answers to questions for $5! John Ward presided over an auction of some great items which were generously donated by people and businesses from our community.
The Newhaven College Student Cabinet adopted YAMS Foundation as their major charity for 2010 and last week presented us with a cheque for $7545. Our sincere thanks to all the students and staff at the College for their dedication to helping us find a cure for neuroblastoma, the childhood cancer that took the life of their much loved prep student Kahlilla.
$6,400 raised from the Charity Golf Day on March 25
YAMS Foundation’s Charity Golf Day was an outstanding success again this year with $6,400 raised and going directly into research.
Our sincere thanks to FKP for sponsoring this year’s popular Ambrose event. Despite overnight rain and winds, the weather was very kind to us as 18 teams hit off for a fun filled day after a light lunch.
At the completion of 18 holes, weary golfers enjoyed a sausage sizzle, which was followed by an auction ably conducted by Russ & Brian from Alex Scott & Staff. Congratulations to Duncan Tester’s team for winning the Ambrose event.
NEWS RELEASE: August 25, 2009
One year after her death, little Kahlilla Donahoo continues to inspire … her latest legacy is a new charity aiming to beat the disease that claimed her.
Next month sees the launch in Cowes of the You Are My Sunshine (YAMS) Foundation.
The charity aims to raise $150,000 to fund two years ground-breaking Australian research into the childhood cancer neuroblastoma.
Kahlilla was only five when the disease claimed her. Her commemorative service at the Adventure Resort last August drew hundreds of mourners and her website has attracted more than 400,000 visits.
Her grandparents Judi and Kevin Donahoo of Cowes believe the You Are My Sunshine Foundation will put some reason into her three-year battle with the disease.
“I’m doing this because I don’t want any other children, parents, grandparents and families to go through what we’ve been through,” said Judi.
She approached Murray Jackson, managing director of Westernport Water to support her efforts. Mr Jackson, who established an oncology trust in New Zealand when he worked there, readily agreed.
He now chairs the YAMS Foundation board which also includes Cowes accountant Simon Manning, Helen Foote from Stockdale and Leggo, Judi and her daughter Jess Donahoo. The committee is launching the foundation at an invitation-only function on September 20. Special guest at that event will be Dr Paul Wood, paediatric oncologist at the Royal Childrens’ Hospital.
“Childhood neurobalstoma is unique,” he said. “If you can catch it early enough it can be cured. But if it’s caught later, it’s more difficult to cure and has devastating effects.
“It’s associated with a certain type of cancer-causing gene which is also responsible for a wide range of malignancies – including adult malignancies. It is responsible for more than a million cancers worldwide a year, so any beneficial findings we get from this research can apply to a broad range of malignancies, including cancers in adults.”
The new charity will operate under the umbrella of the Royal Childrens’ Hospital Foundation. It is named after Kahlilla’s favourite song.
Dr Wood recalled: “Despite all that she faced, Kahlilla was always bubbly and positive. She always embraced that raw enthusiasm that is childhood.
“That is so typical of all our patients facing such adversities – they do it with such enthusiasm and dignity. It never ceases to amaze me.”
A website is being developed and a range of other fund-raising events are planned.
Donations of $2 or more to the foundation are tax-deductible. The foundation is now seeking donations of goods and services and volunteer helpers are also sought.