EHE Rare Cancer Foundation Australia | Community organisation

EHE Rare Cancer Foundation Australia

Add/Update information

Reviews

Tags

• Non-profit organisation
• Charitable organisation
• Community organisation
• Charity organisation

25.01.2022 EHE-RCFA Director Jane Biddlecombe attended a 3 part seminar run by Patient Voice Initiative Australia. Jane is passionate about connecting with our EHE community and hearing their concerns, needs and lived experiences in order to drive change to better meet the needs of our diverse community. Patients are recognised for their contribution and are referred to as lived experience experts More to come on how to participate...

25.01.2022 Breelyn Wilky MD is a Sarcoma oncologist and researcher who sees a large number of EHE patients in the US. Read her article on COVID19 and continuing cancer care.

23.01.2022 Repeat Stepper Steve is back for his 3rd year in the 10,000 Steps Challenge. He is so eager to start he popped past our office to collect his 10k pack so he can start tomorrow! The EHE Rare Cancer Foundation is so appreciative and grateful to our regular supporters and repeat 10k Stepper who motivate us to keep moving forward because they believe in the work we do.

23.01.2022 Orders for the EHE 2021 Calendar close THURSDAY morning. Consider buying 1 or more. Gift to family, friends, business associates this Christmas knowing that every dollar will go towards rare cancer / sarcoma research. Sarcoma and rare cancer cancers make up 10% of all cancers diagnosed in Australia but account for over 50% of all cancer deaths. Sarcoma unfairly affects mostly younger Australians. The June picture was taken by Claire Ann in Damaraland Namibia during a trip ...in September to work for an elephant conservation charity. A bitter sweet memory, as this trip had originally been planned three years earlier; however her then 17 year old daughter was diagnosed with EHE and sadly lost her battle soon after her 18th birthday. We thank Claire Anne for sharing her story and continuing to support the EHE Foundation We have come so far in 5 years and we hope in another 5 no person will die of EHE but more importantly our research can unravel the mysteries of other common cancers that affect many. 100% of money raised from the sale of the calendar will go to FRONTLINE Research. Email [email protected] to place your order.

22.01.2022 CALLING ALL RUNNERS!!! 40 places available to EHE Supporters in the LONDON LANDMARKS HALF-MARATHON. The event is in March 2020, and every dollar raised for this event will be MATCHED!!! ... 1. Could you run for us? 2. Can you help us raise the funds we need for critical EHE research? 3. Do you have family or friends who would run for us? 4. Do you have work mates who would run for us? 5. Does your employer offer matched funding? If you have answered yes to any of the above questions, please get in touch as we need your help in March!! Either add a comment below, message me or get in touch with EHE UK Director Hugh, [email protected] The last two years have been great occasions. Let’s make 2020 the best yet. Let’s run; let's raise that cash and destroy EHE!!’

22.01.2022 CALLING ALL PHOTOGRAPHERS The EHE-Rare Cancer Charity UK are seeking landscape photographic submissions for the FIRST ANNUAL EHE WALL CALANDER, which will be available in time for Christmas. The calendar will be distributed globally, so this is a great opportunity to share your slice of paradise, with all money raised going directly to frontline research. ... The EHE Community is truly a global volunteer led organisation and this calendar is recognition of the contribution of all our members to our cause; whether you are a patient, carer, family member, friend or donor we encourage you to get involved by submitting your photos. Email your high quality resolution photo (.tiff or .jpg) with a blurb about yourself, where and when the photo was taken to [email protected] and Anna Wydro at [email protected] before the 28th of September 2020. Have fun and the EHE-RCFA looks forward to seeing your photos.

21.01.2022 ***** QUARTERLY RESEARCH UPDATE ***** PROJECT: Identification of TAZ-CAMTA1 Regulators RESEARCHER: A/Prof John Lamar Ph.D, Albany Medical College, New York... 1. Identification of 6 genes that are able to repress the activity of the TAZ-CAMTA1 fusion protein in cells 2. Significant progress towards developing optimized assays to test if any of these 6 genes can repress the tumorigenic function of TAZ-CAMTA1 in mice. 3. Continuing work to develop and optimize an in vivo system to study TAZ-CAMTA1 tumorigenic function. If you would like further information about this research or would like to donate to continue this line of scientific enquiry please email [email protected]

20.01.2022 DOUBLE YOUR IMAPCT - SIGNS UP COST TO BE MATCHED Thank you COOLALINGA SHOPPING CENTRE (Woolworths) for generously matching all new sign ups to the 10K challenge. SIGN UP TODAY: Go to www.ehefoundation.com.au and follow the links.

18.01.2022 EXPRESSION OF INTEREST - ONCE IN A LIFETIME OPPORTUNITY Larapinta Trail Experience April 2021 Do you love an adventure! Do you want to learn about and explore the ancient beauty of central Australia? Do you love to star gaze, bird spot or simply like to camp (glamp) in style whilst tasting bush tucker and eating a delicious variety of food? ... If so, then consider expressing interest in the EHE-RCFA Larapinta Experience 2021. The Larapinta Trail experience is one of the finest walks in the WOLRD. Partake in an adventure to discover new worlds, new landscapes, and new cultures. Perhaps you’ll even discover how far your personal boundaries stretch as you take on a physical challenge. Itinerary at a Glance DAY 1 - Arrive Alice Springs DAY 2 - Telegraph Station to Wallaby Gap (13.5km) and onto Nick's Campsite (8.5km) DAY 3 - Nicks Camp to Simpsons Gap (10km) plus Standley Chasm and Lookout Walk (5km) DAY 4 - Serpentine Gorge to Charlie's Camp (13km) optional walk to Serpentine Chalet Dam (2km) DAY 5 - Charlie's Camp to Ochre Pits (8km) Optional walk Ormiston Gorge to Finke River (10km) DAY 6 - Mount Sonder (16km), early morning sunrise walk. DAY 7 - Return to Alice Springs The cost per person to participate $6000 (100% tax deductible donation) You can fund your trip by hosting a Fundraiser to meet your costs. *What’s Included; airfares, 5 nights exclusive semi permanent campsites 1 night twin share Hotel Alice Springs 6 breakfasts, 5 lunches and 6 dinners Professional wilderness guide and support staff Swags for sleeping (but not sleeping bags) Catering & dining utensils Off road transport from Alice Springs All National Park and camping fees Comprehensive group first aid kit Emergency radio/sat phone For more information email: [email protected]

18.01.2022 Thank you to all EHE patients, volunteers & supporters for being part of the global movement to find a cure for EHE. Thanks to you, we have increased our research from 1 dedicated research project in 2015 to over 12 projects in 2019. The attached article published in Nature (Nov 19) acknowledges the roles that rare cancer groups play in advancing research into their own diseases. This is no different to what is happening in the EHE Group; led by an inspiring group of de...dicated individuals. Thank you https://www.nature.com/articles/s41587-019-0303-z.epdf

17.01.2022 RESEARCH UPDATE In May 2019 the EHE-RCFA helped fund a research project, led by A/Prof John Lamar, entitled identification of TAZ-CAMTA1 regulators. Since then Lamar and his team have already ... Identified 6 genes that are able to repress the activity of TAZ-CAMTA1 fusion protein in cells Developed assays to test these 6 genes to see whether they can suppress the function of TAZ-CAMTA1 in vivo QUOTE A/Prof Lamar "These findings suggest that existing cellular pathways can be harnessed to repress the transcriptional activity of the TAZ-CAMTA1 fusion protein that is essential for EHE disease progression. Thus, if we can use existing therapeutic compounds to activate any of these 6 proteins or the pathways that regulate them, we may be able to treat EHE If you wish to receive the full technical summary, please email the team at [email protected] *YAP, TAZ, and TEAD; are the primary genes affected by the translocation that is responsible for EHE.

16.01.2022 Many patients actively sequence and analyse tumour DNA. What if analysis of germline DNA (blood and hair) could contribute to an improved understanding of the genetic determinants of EHE? Could it enable earlier, more effective cancer detection and treatment? Read the interview with Prof David Thomas for his thoughts on this unique, free to participate, clinical resource. The EHE-RCFA is actively recruiting EHE patients into ISKS. Sign up today by emailing: [email protected] to ask for an ISKS pack. https://www.illumina.com//exploring-the-forgotten-genome-o

16.01.2022 JOIN THE CHALLENGE or DONATE TODAY 10K Challenge starts this THURSDAY 1st APRIL 2021 Go to: https://www.ehefoundation.com.au... **100% of entry donations will be matched by Coolalinga Shopping Centre **100% of money raised from the event goes directly to frontline research

16.01.2022 It’s a big deal when ASCO (American Society of Clinical Oncology) Posts an article on the EHE Foundation $1 Million Dollar Grant. There is a further $1 million in matched dollars; a great opportunity to partner with us! It’s not often there is an opportunity to directly influence cancer research and outcomes for patients. https://www.ascopost.com//1-million-gift-for-epithelioid-/

13.01.2022 Calling all EHE patients (Australia and Globally) The International Sarcoma Study (ISKS) is still open to patients to join. It is easy to participate; you will be required to fill in a short survey and send in a blood or hair follicle sample to allow us to study genomic risks for EHE. Your participation will allow us to create a one of a kind resource that will be available to researchers across the globe. The EHE-RCFA is partnering with Garvan to identify ... Common distinctive genetic characteristics shared by the EHE patients Correlation of genetic characteristics with EHE behaviour/natural history. Compare and contrast EHE with other known sarcomas and diseases Identify potential therapeutic targets/avenues It is easy to get involved: email [email protected] Copy and paste the wording below Dear Mandy, I am writing to you today to express interest in participating in the International Sarcoma Kindred Study. I am a patient with Epithelioid Hemangioendothelioma (EHE). My contact details and address is ********* Thank you *name* If you have any questions please comment below or email [email protected] Thank you EHE Team Australia

13.01.2022 We are excited to announce that The EHE US Foundation will receive $US450,000 Award from the Chan Zuckerberg Initiative (CZI) to drive progress towards treatments and a cure for Epithelioid Hemangioendothelioma (EHE). CZI will be providing The EHE Foundation with * funding * training... * community mentorship * capacity-building services to assist in establishing a network of researchers and clinicians, convening their community, and developing a research agenda. JENNI KOVICH, US EHE FOUNDATION PRESIDENT We are incredibly grateful to CZI for their support and funding. The opportunity to be a part of the CZI Rare As One Project is game-changing in the rare disease world...the knowledge of patients suffering from a rare disease is key to driving breakthroughs in research. PRISCILLA CHAN, CO-FOUNDER & CO-CEO of CZI No one is more committed to finding cures for rare diseases than the patients and families of those affected by these disorders.

12.01.2022 A unique opportunity to experience the sites of London, up close and traffic free, all while raising money for a good cause. The EHE-RCC is seeking 3-4 runners to compete in the London Landmarks Half Marathon next year on 29th March 2020. Runners are welcome from across the globe! Please share with friends or family who might be interested in running (or powerwalking) in this event. ... For more information email [email protected], send a PM or ask a question below.

11.01.2022 Rare Cancers Australia’s offical podcast Radio Rare is a must listen to podcast which covers a number of key issues relevant to rare disease communities. The podcast delves into the many aspects of rare disease issues experienced by patients, carers and researcher alike. Radio Rare podcasts shares stories as diverse as patient experiences, carers support, patient advocacy, understanding research / clinical trials, psychology, pharmaceutical perspectives and more. ... Patient empowerment is key to creating change in rare cancer communities. Rare Radio is an important tool to inspire. educate and connect rare cancer communities like the EHE-RCFA Jane Biddlecombe Founding Director EHE-RCFA Episodes are released every Tuesday at 9.30am and available on Apple Podcasts, Spotify and Google Podcasts. Follow and listen for free. Www.rarecancers.org.au/page/133/radio-rare

11.01.2022 CALLING ALL PHOTOGRAPHERS 6 days until submissions close... The EHE-Rare Cancer Charity UK want to celebrate our global EHE community with a photographic wall calendar showcasing where we live. The calendar will be distributed globally, so this is a great opportunity to share your slice of paradise, with all money raised going directly to frontline research. ... Email your high quality resolution photo (.tiff or .jpg) with a blurb about yourself, where and when the photo was taken to [email protected] and Anna Wydro at [email protected] before the 28th of September 2020. Have fun and the EHE-RCFA looks forward to seeing your photos.

11.01.2022 The EHE RARE CANCER FOUNDATION AUSTRALIA GRANTS $28,000 TO SUPPORT GROUNDBREAKING EHE RESEARCH AT THE CLEVELAND CLINIC Thanks to your donations in 2018, the EHE-RCFA has fulfilled a grant commitment of $28,153.15 to Dr Brian Rubin’s EHE Research Program. The UK and USA have also committed $60,222 each to the program. This latest grant will be invested in testing therapeutic compounds that target TAZ-CAMTA1, which is the genetic mutation found in 90% of EHE samples. ... We hypothesise that if we can inhibit TAZ-CAMTA1 we may be able to control EHE. Rubin’s team have already produced assays and this funding will allow Dr Rubin to screen a 50,000-molecule library to test for the ability to inhibit the interaction between TAZ-CAMTA1 and TEAD4, which could be EHE’s Achilles heel. As a result of this project / Assay Screening, Dr Rubin’s team hope to have identified at least 1 chemical series which will lead to drug development.

10.01.2022 The US, UK and Australian EHE Foundations work closely together to raise awareness, advocate for improved care and drive research. Our quarterly newsletter showcases the work we do. This month takes a look at Australia’s contribution to the cause. Enjoy.

06.01.2022 A message from David Thomas encouraging EHE Patients to get involved in the EHE-RCFA project as part of the International Sarcoma Kindred Study. My name is David Thomas, and I’m Director of the Kinghorn Cancer Centre and head of the Cancer Theme of the Garvan Institute of Medical Research, and an advisor to the Australian Rare Cancer Foundation. I’m writing to make you aware of the International Sarcoma Kindred Study (ISKS), which aims to create a genetic database for all sa...rcomas, including EHE. All patients with sarcomas are welcome to participate in ISKS, and participation is free. I encourage you to sign up to the ISKS, so we can create a unique EHE genetic database for answering questions about why EHE happens to some people and not others, and to open up new ways to better manage EHE. Research of this kind is essential to improving the lives of those affected by EHE. Contributing to the study is easy. The EHE Foundations worldwide are committed to signing up as many EHE patients to the ISKS as possible, and your participation and support is key. Please join the study if you can, and be part of the search for answers to EHE. David Thomas | Director and Division Head Genomic Cancer Medicine Cancer Division Garvan Institute of Medical Research

06.01.2022 The Virtual 10,000 Steps Challenge is Back! April 1st - 30th 2021. Everyone (especially our fur babies) benefits from your commitment to reaching your daily step goal. ... Sign up now https://www.ehefoundation.com.au register for $50 to receive your pedometer, cap and join our online Facebook group to share your 10K Step adventures and be in the draw to win great prizes. Whether you sit at your desk all day at work, or are so busy with kids at home, we are all guilty of putting our physical and emotional needs last on our "to do" list. Remember how good it felt to incorporate regular physical activity into your day. The benefits you felt from increased energy and improved fitness. Didn't your concentration, productivity, self esteem, and sleep improve? Then there are the benefits you can't see such as strengthening your bones, boosting your immune system all whilst sweating out toxins which boosts oxygen and blood flow which made your skin fresh and vibrant! Plus who doesn't enjoy the excuse to get out everyday and catchup with friends, family and even work colleagues. Don't forget the amazing warm and fuzzy feeling you get when you know you are raising money that drives frontline research. To sign up go to https://www.ehefoundation.com.au If you want to know more about the work we do and the research we have funded email Jane at [email protected] Or if you would like to donate, just follow the links on our website.

06.01.2022 MAJOR RESEARCH ANNOUNCEMENT WOLRD FIRST EHE GEM MODEL DEVELOPED YOUR SUPPORT MADE IT HAPPEN Thank you to all our supporters who have donated, fundraised or volunteered for the EHE-RCFA since 2015. Your donation of time and money has been utilised to develop the worlds first EHE Mouse Model.... Your belief in the EHE research program has helped significantly towards this important breakthrough which will Change how EHE can be studied Increase the rate in which we can learn about EHE Is a major steps towards developing a cure for EHE This work started in 2011 when the CRAVAT Foundation led by Guy Weinbery and Cynthia Pollack made the first donation to support research into EHE with Brian Rubin and 8 years later the goal has been achieved, thanks to all our supporters. There is still more to be done, but today is a day to celebrate!!! PHOTO CREDIT: Guy Weinberg Guy (Cravat Foundation pictured right) granting Brian Rubin the first dedicated donation from an EHE Foundation in 2011 with the goal of developing a GEM Model to study EHE.

06.01.2022 Rare Cancers Australia along with the National Oncology Alliance are hosting a virtual launch of the VISION 2020 - 2030: BUILDING AN AUSTRALIAN CANCER FUTURES FRAMEWORK. Monday 9th November 2020 9,30 -12.45 AEDT... Rare Cancers Australia lead the way in advocating for rare cancers to ensure patients needs will be met equally and optimally over the coming decade. To register your attendance go to: https://kastio.com/canforum-2020

05.01.2022 The team at the EHE Rare Cancer Foundation would like to wish Kate, founder of Rare Cancers Australia; Australia’s lead advocacy group for rare cancers all the best as she starts on a clinical trial. The team at EHE-RCFA are made of patient volunteers and are proud supporters of Kate and the RCA.

05.01.2022 The 2021 EHE Wall Calendar is now available to order comprising of beautiful images captured by our worldwide EHE Family. The EHE Group motto is "JUST LIVE" and many of the images represent this. The photos in the calendar , each tell a story that reminds us to "Just Live" To order just click on the link below or ... send an email to: [email protected] with your name, postal address and the number of copies you would like. http://ehecalendar2021.info/

04.01.2022 BREAKING NEWS BREAKING NEWS BREAKING NEWS The EHE Foundation International Board of Directors are pleased to announce that the EHE Foundation US has secured a $1 MILLION dollar grant from the Peterson Foundation to advance the research of Dr Brian Rubin. The grant also includes as additional $1 MILLION dollars in matched funds; since April 2019 the Australian Foundation has raised over $9900 which will be 100% matched. ... This is a game changer in the fight to find a cure for EHE! The Margie and Robert E. Petersen Foundation’s is part of the Automobile publishing giant Robert E. Petersen owned magazines such as Motor Trend and Hot Rod Magazine and founded the Petersen Automotive Museum in Los Angeles. https://fightehe.org/the-ehe-foundation-and-cleveland-cli/

04.01.2022 EHE PATIENT LED RESEARCH PUBLISHED!!! In 2017 and 2018 our EHE Group engaged with a research team at the The Radboud University Medical Centre in the Netherlands to investigate 'Health-Related Quality of Life' for EHE patients. As a rare cancer community, it is vital we engage with researchers to drive research that positively impacts our patient community. ... We are pleased to share with you the findings of this study below. https://www.annalsofoncology.org//S0923-7534(19)6/abstract

03.01.2022 EHE RESEARCH COMMMUNITY

02.01.2022 The latest edition of the "Pledge" a quarterly newsletter dedicated to highlighting the work of all members of the worldwide EHE community is now available just click the link below. http://www.ehefoundation.com.au//The_Pledge%20%23018%20Q3_ This edition is a great read, take some time and see what your continued support has enabled us to achieve.... Thanks also to all our EHE Foundation volunteers for making it happen! Pledge Credit: Hugh Leonard EHE-RCC UK

02.01.2022 Calling all interstate (and of course Darwin) supporters of the 10,000 Steps Challenge; SIGN UP TODAY to ensure your 10K pack is in the post Monday in time to start April 1 2021. Click here and follow the links: https://www.ehefoundation.com.au Organise a team of 5 and you receive a free pedometer. ... Sign up today and know that 100% of funds from this event will be going to front line research

02.01.2022 International Sarcoma Kindred Study Engagment Update: Our goal is to enrol 100 EHE Patients in order to create meaningful data. Join today by emailing [email protected] or [email protected]