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INCA Monthly Newsletter - May 2018 News Update
INCA Members' News
Medical News
INCA Members' News

AMEND Organizes Trekking Weekend to Raise Funds


The Yorkshire Three Peaks, in the Yorkshire Dales, represents a challenge for the keenest of walkers from 29th June to 1st July, 2018. To scale three mountains in two days is no mean feat and provides an exhilarating and demanding trek in some of the most spectacular countryside England has to offer. This fundraising event is a tough and rewarding weekend in steep, rugged country, offering an unforgettable sense of achievement.
As part of our 15th Anniversary celebrations, AMEND has organised a bespoke (AMEND-only) fundraising weekend, which means that, if you want to take part, all you have to do is pay a small registration fee (£50) and raise sufficient funds to go (minimum £400 but please aim for a minimum of £500 if you can). AMEND then pays the bill from the funds raised and benefits from any extra funds.

More from AMEND

Letting Go and Looking Forward - CCF Anniversary Video Speaks About the Benefit of Yoga


CCF’s 50th anniversary video series continues with “Letting Go and Looking Forward.” Diagnosed with a pancreatic neuroendocrine tumor in 2014, Stacie Chevrier’s first reaction was fear and anxiety. Then she found yoga, where she is strong, present, and in control. “You have to find something to be grateful for every day, because there is always something to be grateful for,” says Stacie. This video is part of a series in celebration of the Carcinoid Cancer Foundation’s 50th anniversary in 2018, made possible by the generous support of Lexicon Pharmaceuticals as part of the Fit-to-Fight series. Watch the video on CCF's Facebook page or Youtube channel.

Team Zebra Ottawa Raises $13,000 for NET Cancer Research


Congratulations to the amazing Team Zebra Ottawa, who participated at the Tamarack Ottawa Race Weekend, raising $13,000 for NET cancer research in Canada!
Thank you to the members of the team: Natalie Mezey (Team Captain), Hunter Fox, Bryde Fresque, Catharine Young, Ken Young, Alisha Bailey, Stephanie Goubau, Claire MacArthur and a very special thank you to Sherry O'Grady Fox.

CNETS Canada's dedicated Team Zebra Ottawa members ran and walked sporting zebra gear, to help raise awareness and much needed funds for NET cancer research.

NET Patient Foundation Hosts First Meeting of Dieticians with Interest in NETs - DING


The NET Patient Foundation was delighted to host the first European dietetic group meeting - DING - Dieticians Interested in NETs Group. Around 25 dieticians came together from across the UK, the Netherlands and Denmark to educate and share issues that are effecting our NET patients. Controlling  symptoms caused by this disease is such an important area to get right so we can improve the quality of life for all suffering.

Guest speakers included Jo Grey from AMEND and Ronny Allan, both of whom shared their personal stories. There were also presentations covering functional tumours, small intestinal bacterial overgrowth, mesenteric fibrosis and side effects of somatostatin analogues.

NETRF Announces Grant Funding for Neuroendocrine Cancer Research
Request for Applications Issued


The Neuroendocrine Tumor Research Foundation (NETRF) has announced its latest Request for Applications (RFA) and invites innovative research applications in neuroendocrine tumors (NETs) that can bring the field closer to more effective therapies. 

“We are looking to fund research capable of having a rapid impact on improving care for NET patients,” said Elyse Gellerman, NETRF chief executive officer. “These are significant grants meant to attract the most talented researchers around the world.”

This uncommon cancer occurring in hormone-producing cells is often overlooked for research funding. NETRF serves as the major private funder of NET cancer research. “There have been many recent discoveries that have changed the way some cancers are diagnosed and treated,” said Daniel Chung, M.D., co-chair, NETRF Board of Scientific Advisors. “But the treatment of NETs lags behind. We need to accelerate our search for effective treatments and are looking for transformative ideas.” 

To ensure that high-quality, meaningful research proposals are selected, NETRF uses a rigorous peer review process, which includes external expert reviewers and a Board of Scientific Advisors. “We are seeking cutting-edge research proposals that apply novel science and new technologies to help advance existing knowledge and accelerate the development of diagnostic and therapeutic interventions for patients,” said Effie Tzameli, Ph.D., NETRF director of research.

The NETRF Board of Directors reinforced its commitment through this offering. “We are committed to projects based on strong science that can both increase our understanding of these tumors, while also offering real potential for extending and improving patients’ quality of life,” said Joseph Li, M.D., chair, NETRF Board of Directors.

More from NETRF

Announcement of $2.5 Million for Research Into Low Survival Cancers in Australia

The Victorian Low Survival Cancers Alliance is a group of 11 organisations that are advocating to increase research funding for cancers with a five-year survival rate of less than or equal to 30%. For some of these cancers, survival is as low as 6%. The Alliance formed in 2016, in which Unicorn Foundation was a founding member, wrote to the Victorian Health Minister and consulted clinicians and researchers working in this space and also made a submission in the Senate Inquiry - Funding for Research into Cancers with Low Survival Rates. 

The Unicorn Foundation was pleased to hear that the work of the alliance has resulted in “an announcement of $2.5 million from the Victorian Government and Cancer Council Victoria to investigate cancers in which less than 50% of patients survive at least five years past diagnosis.”

The Unicorn Foundation looks forward to further working with the Cancer Council on encouraging young researchers in this field.

More from the Unicorn Foundation

Medical  News

First NETs Centre of Excellence Accredited Outside of Europe

The Peter MacCallum Cancer Centre in Melbourne, Australia is the first centre outside of the European Union to receive accreditation as “Neuroendocrine Cancer Centre of Excellence” by the European Neuroendocrine Tumor Society (ENETS).  The centre was given a full 3-year accreditation which is a great honour and testament to the exceptional team who always go above and beyond for their patients.

"We are very proud to be the first centre outside the European Union to be considered for and awarded Centre of Excellence Certification by the European Neuroendocrine Tumour Society (ENETS). Often interim accreditation is only given for one year if there are any perceived issues that require rectification but we have received a full 3-year accreditation", said Prof. Rodney Hicks, Head of Molecular Imaging and Targeted Therapeutic Laboratory.

Simone Leyden, INCA President and CEO of the Unicorn Foundation and Kate Wakelin, NET Patient Support Nurse of the Unicorn Foundation presented to ENETs auditors the role of the foundation, through providing much needed patient resources, education and support, and highlighting the important symbiotic relationship between Centres of Excellence and NET patient organisations in providing optimal patient outcomes.

Read more from the Unicorn Foundation

Melbourne to Host APNETS 2018 on November 9-11, 2018

The APNETS scientific program brings together experts from around the world in all disciplines of NET patient care, presenting the most up-to-date research, clinical trials, guidelines, treatment options and diagnostics. The scientific program will be based on a problem-orientated approach to patient care, reflecting the multidisciplinary nature of this disease.

Registrations are now open for the Unicorn Foundation NET Patient Symposium on November 11. It offers an outstanding opportunity to hear from local and international thought leaders in NETs. Everyone interested in NETs - patients, carers, family, and healthcare professionals.  
Almost half of the global population lives in the Asia-Pacific region where there is a wide range of socio-economic development and varying sophistication in healthcare. This opens the way for regional collaboration in clinical trials and research in NET that both address the challenges of managing a rare disease in countries with limited resources and also the ability to recruit large patient numbers in complex studies using the very techniques that will have international relevance.

Late-breaking abstracts' submission deadline is June 29, 2018.


Open Issues on G3 Neuroendocrine Neoplasms: Back to the Future

A publication in the Society for Endocrinology's journal Endocrine-Related Cancer looks into the open issues around grade 3 (G3) neuroendocrine neoplasms (NENs). The recent recognition that G3 NENs can be divided into two different categories according to the histopathological differentiation, that is G3 neuroendocrine tumors (NETs) and G3 neuroendocrine carcinomas (NECs) has generated a lot of interest concerning not only the diagnosis, but also the differential management of such new group of NENs. However, several issues need to be fully clarified in order to put G3 NETs and G3 NECs in the right place. The aim of this review is to focus on those issues that are still undetermined starting from the current knowledge, evaluating the available evidence and the possible clinical implications.

Full publication

Pressure to Stay Positive May Be a Negative for Cancer Patients

Emphasis on fighting cancer may prevent honest conversations about dying from taking place.
The perceived need to “fight” cancer and remain positive is having a negative effect on people living with the disease, especially those with a terminal diagnosis who are not getting the right support for the end of life. Research by YouGov found that three-quarters (76%) of people with cancer said they had thought about the fact they may die from the disease. But Macmillan 
Cancer Support said its research showed there were a number of barriers preventing honest conversations about dying from taking place, one of the biggest ones being the pressure to stay positive, even when patients received a terminal diagnosis.

Of the people surveyed who had spoken to their healthcare team about dying, only 19% said the conversations were initiated by a health or social care professional. Furthermore, a quarter of people with cancer said they had not shared their thoughts about death and dying with anyone due to the pressure to see themselves as a “fighter”. More than one in four (28%) said they found it difficult to talk honestly about their feelings around the disease, and a similar number (28%) said they felt guilty if they could not remain positive.

Macmillan said this gulf in communication meant many cancer patients were not having vital conversations about end-of-life preferences until it was too late, and thousands of people were unnecessarily dying in hospital against their wishes.
Adrienne Betteley, a specialist adviser on end-of-life care at Macmillan Cancer Support, said: “We know that ‘battling’ against cancer can help some people remain upbeat about their disease, but for others the effort of keeping up a brave face is exhausting and unhelpful in the long-term. We need to let people define their own experiences without using language that might create a barrier to vital conversations about dying.

“For health and social care professionals there is often a fear that the person is not ready to talk about dying. We know, however, that making plans while receiving treatment allows people with cancer to retain a sense of control during an emotionally turbulent time.

Full article

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