NET Cancer Day
Nov 9 2013
In recognition of Worldwide NET Cancer Awareness Day on November 10, NorCal CarciNet is hosting a one-hour, free webinar. Here’s a great opportunity to hear from 3 of the leading specialists in carcinoid/NET cancer treatment on NET CANCER DAY: Professor Dr. Richard P. Baum, Bad Berka, Germany; Dr. Eric Liu, Vanderbilt University, Tennessee; and Dr. Thomas O’Dorisio, University of Iowa. The webinar will be moderated by Josh Mailman, President of NorCal CarciNET and Chair of Patient Advocacy for the Society of Nuclear Medicine, and Bill Claxton, founder of CNETS Singapore.
To reach as wide an audience as possible, the webinar will start at 7 am Pacific Time. Space is limited to 500 viewers/participants with dial in for up to 150 people with local non-toll-free numbers in 23 countries for those who will not be at a computer and would like to listen to the webinar.
To join, please register here: http://norcalcarcinet.org/index.php/netcancer-day-webinar
It is with deep sadness that INCA has learned of the passing of Agneta H-Franzen, Chairperson of Carpa, the Swedish NET patient organization, and a founding member of the International Neuroendocrine Cancer Alliance. Agneta was a passionate advocate for carcinoid/neuroendocrine cancer patients in Sweden and around the world. Her colleagues valued her friendship, professionalism, and dedication to ensuring that NET cancer patients received the best care possible. We will miss her passion and compassion. From all of us at INCA, we extend our deepest sympathies to Agneta’s family, friends, and colleagues, and to all who were part of her Carpa family for so many years. We will miss you, Agneta!
Sep 10 2013
On August 31, 2013, the carcinoid/neuroendocrine tumor (NET) community throughout the world lost one of its most passionate advocates, Maureen Coleman, Founding Past President of CNETS Canada and a founding member of the International Neuroendocrine Cancer Alliance (INCA).
After retiring from teaching, Maureen, a NET cancer patient diagnosed in 2000, dedicated her time to supporting other NET cancer patients. She initiated the first support meeting of Canadian NET patients in Toronto, Ontario in May of 2001. During the next six years, along with this small group of patients, she developed the foundation for the organization that became incorporated as CNETS Canada in 2007. She served as President of CNETS Canada from its incorporation until December 2012.
Maureen had an enormous impact on the NET cancer community – touching the lives of individuals and their loved ones; making huge strides in funding NET cancer research in Canada; and bringing awareness of these rare diseases to Health Canada authorities, other political officials, physicians, and the public. She envisioned a CNETS Without Borders, an international network of patient support groups which act locally, while cooperating globally. Thus was borne CNETS Singapore and her global vision was later realized in the creation of INCA, which initially began as the informal organization, the World NET Community.
We will miss her ever-present smile, her dedication and commitment to the NET cancer community, her desire to help those who are newly diagnosed as well as those living with NETs for many years, her knowledge, her compassion, and her vision. But she will always remain with us because we will each work a little harder to ensure that what she envisioned for the NET cancer community will be her legacy.
We extend our deepest sympathies to Maureen’s family, friends, and colleagues. Please CLICK HERE for information about making donations in Maureen’s memory and to sign the memorial book for her family. We welcome all to express their condolences and memories of Maureen on the NET Cancer Day Facebook page: https://www.facebook.com/netcancerday. And visit the CNETS Canada website to read the organization’s moving tribute to Maureen : http://www.cnetscanada.org/.
Jul 29 2013
The International Neuroendocrine Cancer Alliance (INCA) announced its new name, the official one to be used by the organization, which has committed to being the global advocate for neuroendocrine cancer patients. Envisioning a world where all neuroendocrine cancer patients get a timely diagnosis, the best care and ultimately a cure, INCA (formerly known as the Worldwide NET Cancer Awareness Day Alliance) was established in 2010 in Berlin, Germany. The key focus of the Alliance, whose current members are NET patient groups and advocacy organizations from Asia, Australia, Europe, and North America, is to raise awareness of neuroendocrine cancer in the healthcare community and throughout the general public.
“It is the passion to change things for the betterment of neuroendocrine cancer patients that drives us forward as a deeply committed team, to unite patient advocates from around the globe in this effort,” commented Grace Goldstein, President of INCA and Chief Operating Officer of the Carcinoid Cancer Foundation in New York, USA.
Encouraging early diagnosis by working collaboratively with the healthcare community and the public, the Alliance also recognizes universal access to high-quality multidisciplinary care and the dissemination of accurate and user-friendly information about neuroendocrine cancer as its top priorities.
INCA also serves as a global platform to support existing and new patient-focused neuroendocrine groups and advocacy organizations from around the world. By maximizing the resources of its current members and actively reaching out to new ones, INCA encourages sharing best practices and experience, which is crucial in the context of rare cancers.
Jun 22 2013
Neuroendocrine carcinomas (NEC) outside the lungs.
New video from NET Kanker, the Dutch NET support group, with English subtitles
Poorly differentiated, high grade, neuroendocrine carcinomas (NEC, stage 3) are an aggressive form of cancer. NEC originating outside the lungs are very rare. In this film expert physicians in NET and NEC explain about diagnosis and treatment options for NEC. The specialists from the centers of expertise are:
- Dr. Margot Tesselaar, internist-oncologist, Antoni van Leeuwenhoek Hospital, Amsterdam
- Dr. Loes van Velthuysen, pathologist, Antoni van Leeuwenhoek Hospital, Amsterdam
- Dr. Annemieke Walenkamp, internist-oncologist, UMC Groningen
- Dr. Ferry Eskens, internist-oncologist, Erasmus MC, Rotterdam
See the video on YouTube ……
May 23 2013
Congratulations to Teodora Kolarova, a member of the Board of Directors of the International Neuroendocrine Cancer Alliance (INCA) and Chairperson of INCA’s Communications Committee, upon winning a BAPRA Bright Award 2013in the category “Innovative Campaign.” The award recognized the “Follow the Zebra” public relations campaign which included a flash mob for NET Cancer Day 2012 and the 5-cartoon campaign of Netty the Zebra, created to bring about greater awareness of neuroendocrine cancer. The cartoons were featured in a calendar created especially for physicians and distributed to over 1,000 members of the medical community.
BAPRA Bright Awards, the only public relations (PR) contest in Bulgaria, affords PR professionals the opportunity to be among the leaders of the communications sector in Europe. The honorable Jury Committee of the Bright Awards is comprised of prominent international PR experts, with worldwide expertise in communications. This year’s jury was chaired by Francis Ingham, Executive Director of ICCO, the global organization representing over 1,500 PR agencies in 28 national associations from around the world and the Director General of the UK PR consultancy Association (PRCA).
About Ms. Kolarova’s entry, juror Rohit Bhargava, CEO and founder of Influential Marketing, who gave the maximum score to the project, wrote in his evaluation: “Really loved the innovative approach to try and get this rare disease to stick in people’s minds. I could see how this would break through the clutter. The smart use of flash mobs and more modern methods also made this campaign memorable and effective. Great job!”
Ms. Kolarova has represented the Bulgarian cancer patient organization APOZ and Friends on the INCA Membership Council since March 2011. In her capacity as APOZ Communications Consultant, she has been dedicated to promoting cancer awareness and prevention, especially neuroendocrine cancers. Ms. Kolarova has a background in communications, strategic counseling, media relations consultancy, creative writing, and project management. She is the founder and owner of the public relations firm, PR NET.
Mar 22 2013
An exciting weekend of events (March 22-24) is planned in support of a major fundraising effort by Stichting NET-groep in the Netherlands to establish an international research study on NEC (neuroendocrine carcinoma), grade 3, a fast-growing, aggressive neuroendocrine tumor that frequently begins in the lungs but can occur anywhere in the body. Due to the nature of the tumor, by the time a patient is diagnosed the cancer has generally spread.
There will be a run for children, a hockey tournament, and a walk/run for participants of all ages. A highlight of the weekend will be a sold-out benefit evening on March 22 with performances by Flairck, an acoustic Dutch band; Louise Korthals; Francesca of Raab of Canstein; and Erik Mesie, former singer of Toontje Lager. Guitarist virtuoso Erik Visser will accompany Erik Mesie. Benefit guests are also invited to participate in an auction and enjoy refreshments. The dress code for the evening is festive chic in black & white with red accents, in keeping with the NET zebra symbol and the red carpet.
In June, a 113 km (70 mile) pilgrimage from Saria (Spain) to Santiago de Compostela in western Spain will be undertaken by Mark Schweitzer (42, diagnosed with a NEC in October 2012 with metastases to his liver and pancreas) and his good friend Don Scheers, who works for the ecumenical order of St. Lazarus of Jerusalem, to raise funds for the Neuroendocrine Carcinoma Research Fund. (Pictured is the Cathedral of Santiago de Compostela)
Imagine rowing between London and Sweden – that was the goal of a team of rowers in support of their friend Matt who was diagnosed with a NET. Not only did they meet their goal of 1,000,000 meters (621 miles) they exceeded it by rowing 1,200,000 meters or 735 miles and raised an amazing £ 11,100 or $16,843!!! This is one of the many challenges the group will undertake this year to raise awareness of NET cancer and to support the NET Patient Foundation in the UK and the iCancer campaign in support of the anti-cancer virus research at Uppsala University in Sweden. Read more about the challenges the team is planning: http://www.thislifematters.co.uk/rowing-to-sweden. Visit the NET Patient Foundation’s website, http://www.netpatientfoundation.org/, to learn more about their organization.
Dec 16 2012
A new film and website page dedicated to lung NETs (grade 1 carcinoid and grade 2 atypical carcinoid) has just been released by Stichting NET-groep, the NET patient organization in the Netherlands. Dr. Wieneke Buikhuisen, a NET specialist from the Netherlands Cancer Institute, Antoni van Leeuwenhoek Ziekenhuis in Amsterdam, has been working with lung NET patients for eight years. She is the featured presenter in the film which was created on NET Cancer Day 2012. Early in 2013, the film will be subtitled in English.
The new website page, http://www.youtube.com/watch?feature=player_embedded&v=aPCeAaxapjY, which includes the film, provides extensive information about lung NETs including:
How do doctors determine the grade and type of lung NET?
There are also a dozen links to films about NETs, brochures about lung NETs and NEC, scientific articles, and more. This is an excellent resource for lung carcinoid and neuroendocrine carcinoma patients. In January 2013, Stichting NET-groep, in conjunction with a lung cancer patient organization in Holland, will be creating a film for neuroendocrine carcinoma patients, stage 3.
Thank you to Stichting NET-groep for all you do for carcinoid and NET cancer patients and their loved ones!
Nov 15 2012
The inaugural meeting of the Irish Neuroendocrine Neoplasm Group was held this month at Trinity College Dublin. Irish and international experts in carcinoid/NETs gathered to discuss advances in the field, diagnostic and therapeutic practices currently available in Ireland, as well as areas where Ireland is falling behind, especially in specialized nuclear medicine diagnostic and therapy tools.
Dr. Dermot O’Toole, Consultant Gastroenterologist/Pancreatologist and Associate Professor at St. James’s Hospital and Trinity College Dublin, who organized and served as Co-Chair of the Scientific Committee for the meeting, commented that the meeting “formed the backbone in paving the way for developing a recognized Irish Network to provide care for patients with this disease.”
An open patients’ forum on NETs was held in Trinity Biomedical Sciences Institute in conjunction with Worldwide NET Cancer Awareness Day on November 10. Dr. Susan O’Reilly, Director of the National Cancer Control Programme (NCCP), opened the forum and patients and Irish and Swedish NET cancer experts participated in a question and answer session. The creation of a formal Irish Neuroendocrine Patients Group was also an outcome of the day. Read more
Pictured above, left to right: Dr Dermot O’Toole, Consultant Gastroenterologist/Pancreatologist & Associate Professor St James’s Hospital & Trinity College Dublin; Dr Derek Power, Consultant Medical Oncologist, Mercy University Hospital, Cork; Ms Barbro Eriksson, Medical Oncologist, University Hospital, Uppsala, Sweden; Dr Susan O’Reilly, Director of National Cancer Control Programme; Mr Dan Granberg, Lead Uppsala NET Centre of Excellence, University Hospital, Uppsala and Justin Groghegan, Consultant Hepato-Bilairy Pancreatic
Fennell Photography Copyright 2012.