Our member organisations are very active in their countries - we are very proud to present a selection of what is happening for sarcoma and GIST patients in the world. We thank all our organisation for their outstanding commitment!
Friends of Max Newsletter with special focus on GIST
Our – Sarcoma Patients EuroNet's – objective is to change the situation for GIST patients. But this is something we need to do together and united – not as a single person, not only as one country, but globally. Especially since GIST is such a rare disease. This is one of the things we learnt from our
collaboration with Frieds of Max: Sarcoma Patients EuroNet (SPAEN) was originally founded as European organization. FOM became one of the first members of our organization the minute we made SPAEN international. We learned that it's not enough to concentrate on Europe, but that we'd need to look after GIST patients in other countries as well.
The collaboration with FOM as our member group is of utmost importance to us: It shows us where obstacles are and how the situation for GIST patients differs from country to country, from healthcare system to healthcare system – and what we can actually do together to change the
situation for all GIST patients. FOM does a wonderful work in India for GIST patients. We are therefore very proud that Dr. Nikhil Guhagarkar has decided to join the SPAEN board of directors in 2016 – to represent India and to drive change in GIST forward, not just nationally, but also internationally. FOM: Thank you for your commitment and all the work you do for GIST patients in India and beyond!
Cancer patient organizations advocate in Chile for a National Cancer Law
“On December 4, 2018 President Sebastián Piñera signed in Chile a National Cancer Plan and a National Cancer Law. This is a huge achievement of the work done by a group of cancer patient advocates among which I was very fortunate to be part of.”
When I received my first cancer diagnosis back in 1995, I never thought what it would mean, and how my life would change 180 degrees! In 2002, after receiving the correct diagnosis of GIST and starting my treatment with Glivec, I decided to do something to help other patients so that they didn´t have to go through all that I had experienced being treated as a leiomyosarcoma patient for 7 years. I started to work with The Life Raft Group and founded Fundación GIST Chile. The word “advocate” wasn´t in my mind, I was just thinking of emotional support, information and education, but things changed quite radically.
I saw the need to do a lot more, therefore advocating became one of the main pillars of my work because I faced a reality that until then, I wasn´t aware of-- in Chile, it is estimated that in 2020, cancer will be the first cause of death, many types of cancer, including GIST, are not covered by the health systems (public or private), which means that many patients do not have access to the treatments they need to live, and most of them do not have the resources to pay out of pocket. Therefore, the need of a law that would protect all cancer patients was imminent.
My participation in this project advocating for a National Cancer Law, started several years ago, at the National Cancer Forum, when I was invited as a representative of the Civil Society, to discuss the need of a Cancer law in our country.
Later the initiative was lead by senator Carolina Goic, a cancer survivor, with whom we presented the Law Project to the past government in 2013. Since then, we have been advocating for a law that will protect all cancer patients assuring them not only timely diagnosis, adequate treatments, and palliative care, but also encourage investigation, prevention and early detection. This meant having to meet for years with representatives and key stakeholders in the health industry: representatives of the Ministry of Health, congressmen, medical societies, oncologists, and health journalists, among others.
A month ago, together with a group of cancer patient organization leaders, Senator Carolina Goic, Dr. Claudio Mora, an oncological surgeon who is a cancer patient himself, and other congressmen, we again presented the project of law to the Executive, at “La Moneda” (our house of government), and after doing so, we decided to organize a march to create awareness of the reality of cancer patients in Chile, asking our President to sign the project of law so that it could enter the Congress and start its approval process there.
I had never participated in a march, and I never thought of myself giving out flyers in the middle of the main avenue in Santiago! It was an amazing experience! The power, passion and strength with which we all worked together organizing the march was inspiring: advocates of different types of cancers fighting together for a common cause.
On November 18, the march took place along all of Chile. I had the privilege to be one of the leaders of the march together with Senator Goic and other patient organization leaders. In Santiago, more the 2000 people participated in it, mostly patients, caregivers and friends, each one of them expressing their needs.
Fundación GIST Chile was represented in Santiago with more than 50 participants, our members marched also in other cities such as: Valparaiso, La Serena, and Concepción. During the march, with hope and strength, one common voice was heard throughout the country: “We need a cancer law NOW!”
We had great media coverage and we were on every news program. We were heard, and finally the first days of December the so long-awaited invitation arrived: the invitation to be at our house of government and participate of the ceremony in which our president would sign a National Cancer Plan and a National Cancer Law.
It was a huge achievement and a huge step that marks a great difference in the history of cancer patients in our country, but my work as an advocate does not end here, in a way is just starting, and the challenge is to continue working until we have a law that will protect all cancer patients in Chile.
The DTRF Patient Annual Meeting
by Christina Baumgarten, sos-desmoid Germany and SPAEN board member
The Desmoid Tumor Research Foundation (DTRF) Patient Annual Meeting and DTRF International Research Workshop took place on the weekend 22nd and 23rd of September.
It was a fantastic meeting with medical experts, patient advocates and patients from all over the world. The patient meeting this year was mainly focused on connecting with other desmoid patients, participating in informative lectures and roundtable discussion followed by a race through Philadelphia on the next day to raise money for further research projects.
The second day was focused on research updates in human genetics, drug development and related fields presented by the international medical expert community.
Prof Peter Hohenberger (Germany) presented our paper “The management of desmoid tumors: A joint global evidence-based consensus approach for adult and pediatric patients” This paper was a global initiative from experts with expertise in adult and pediatric desmoid patients and patients and patient advocates. This initiative was supported by the DTRF, sos-desmoid Germany, and SPAEN.
Thanks to Jeanne Whiting, President and Co- Founder, DTRF and Marlene Portnoy, Executive Director and Co-Founder, DTRF for this great meeting and the fruitful collaboration during the last years!
Finland: Ville cycles for sarcoma
In Finland, 250-400 people are diagnosed with sarcoma every year. There are no official sarcoma centers. Yet, sarcoma patients desperately need specialized care (no matter where they live!). Ville Laakso is one of those patients. The father of two boys was diagnosed 10 years ago with an ultra-rare type of cancer and even sarcoma: Mesenchymal chondrosarcoma. This year, he's living one of his long-term dreams: to cycle a three days stage race through three Finnish cities with university hospitals: Turku to Helsinki to Tampere and back - 600 km from September 7 to 9, 2018.
But not just for his own pleasure, but to raise awareness for sarcoma - especially with doctors. With the long-term aim to optimize, broaden and professionalize sarcoma care in Finland - an aim certainly worth supporting!
Read about Ville's story and plans here.
The German organization “Das Lebenshaus” organizes together with Essen University Hospital a patient day dedicated to soft tissue sarcoma, bone sarcoma and GIST patients. It will take place August 31st in Essen, Germany. Further information and registration details can be found here.
Elfstedentocht - Funding for cancer research projects including osteosarcoma in The Netherlands
The Elfstedentocht (Eleven Cities Tour) is the biggest ice-skating tour in the world. The waterways between eleven Frisian cities form the 200 kilometer track of the Eleven Cities Tour. That’s why this sensational ice-skating event can only take place during severe winters. This summer Maarten van der Weijden will attempt to swim the 200 km tour non-stop in three days (18, 19 and 20 August). Maarten is a survivor of acute leukemia. After he recovered he won the gold medal 10 km open water at the 2008 Olympic Games in Beijing. His aim is to raise funding for caner research. Eleven projects, one for each city, have been selected that will be featured during this event. One of these projects is on sarcoma. This research project is investigating the possibilities to apply immunotherapy to osteosarcoma. It is wonderful that Maarten is making this effort, which will receive a lot of media attention, to raise money for sarcoma research. It is also an excellent opportunity to raise awareness for sarcoma in general and for the need for more research on sarcoma in particular.
Follow the event on:
Life Fest 2018 in the USA
The Life Raft Group was proud to celebrate the 9th anniversary of our biennial Life Fest conference. At this unique event, patients and caregivers have the opportunity to gather for a weekend of camaraderie and access to medical and research leaders in the field of GIST. Each year brings a wealth of new information about the latest advancements, treatments and side effect management that patients eagerly await to learn.
This year’s Life Fest conference was held July 13th – 15th at the Downtown Miami Hilton in Florida. It was a spectacular event filled with inspirational stories, laughter and tears shared by GISTERs, caregivers, medical professionals, pharmaceutical representatives, staff, board members, and many friends. There were over 180 people who participated throughout the weekend.
“The best part of the weekend was the support, comradery and new relationships I created with other GISTers.”
We are grateful to our Board of Directors and donors who made possible the Life Fest Scholarship Fund again this year. Scholarships were awarded to families who can’t afford to participate in Life Fest. Almost $20,000 was raised to provide 28 families with support to attend the conference.
The weekend kicked off with a GIST 101 session followed by an informal gathering for all the participants on Friday evening. Our weekend was filled with general sessions designed to inform, educate and provide tools for patients and caregivers alike. Saturday mornings main program consisted of two tracks – one for the adults and another for pediatric patients and their caregivers. The remainder of the weekend’s program involved all of the participants. We are so grateful for our expert speakers and presenters who shared with us not only their knowledge but also their dedication and passion for the GIST community.
“Seeing the enormous efforts on our behalf by so many working on a cure for GIST was the highlight of the weekend.” -“The involvement of so many clinicians have been inspirational!”- “It was wonderful to meet such caring doctors and other GISTers.”
We were very excited to distribute the following awards at Life Fest: GIST Center of Excellence to Sylvester Comprehensive Cancer Center; Jeroen Pit Science to NIH Pediatric & Wildtype GIST Clinic; and Allan Tobes Volunteer of the Year to the MacLea Family and Dillon/Morales Family.
A very special award was given to Ted Wolf during the first GIST Do It Walk on Sunday morning for his courage and philanthropy. The walk took place at Margaret Pace Park. There were over 100 participants at the GIST Do IT Walk to raise awareness and funds towards GIST research. Fifty percent of the proceeds will be donated to Sylvester Comprehensive Cancer Center.
The majority of the participants agreed that they would participate in another Life Fest and felt the overall event was excellent. The weekend concluded with a panel of patient stories and closing remarks made by LRG’s Executive Director, Norman Scherzer, on the Face of Courage.
“It was great being with and hearing from people who “get” my experience.” - “We’ll be back again!” - “Looking forward to Life Fest 2020!”
A grand thank you goes to our corporate sponsors Novartis, Bayer, Blueprint, Decipera and Pfizer. Without their sponsorship this weekend would not have been possible. Much gratitude goes to our volunteer photographer and videographer - Don Edgar and Van Russell. And many, many thanks go to several other volunteers* and staff who gave so much of their time, energy and talent to making this a fantastic weekend for all.
Some of the Participants’ Reported Highlights on the Event Evaluation Form:
- I have hope for a good life
- I have information, better knowledge and understanding of our rare disease
- Case presentations, Clinical panel and GIST support Group session
- GIST Patient Panel Story by Jason DeLorenzo – He has the best attitude and is an inspiration to all
- Learning about new medications that are always on the horizon with research funds
- Meeting Dr. George, Dr. Trent, Dr. Sicklick, Dr. Gonzalez and Dr. Bordanave
- Understanding the need to stay in contact and connected to GIST specialists
- Seeing the enormous efforts on our behalf by so many working on a cure for GIST
- It was great to meet LRG staff
*Volunteers - Anthony Cashin, Michael DeStefano, Julie Durkee, Carolyn DeWalt, Sam Evans, Erin MacBean, Hannah Marcus, Karen Meyers, Marlene Nei, Alyssa Occhiuzzi, Carolina Ponce, and Kay Stolzer
Article by the Life Raft Group
Pediatric & Research Symposium summary
Pediatric & Research Symposium Summary
This year’s event included an expanded Pediatric/SDH-deficient GIST track. Experts covered such topics as Understanding Pediatric & SDH-Deficient GIST, Current Research Findings, the Genetics of Carney-Stratakis Syndrome and Carney Triad, what every patient should know about paraganglioma, and a Q&A with a panel of GIST specialists. Separately, the leading experts in this rare subset of GIST convened for the first-ever research symposium to share their latest findings and individual research. This meeting resulted in the formation of the SDH-deficient Consortium. By pooling resources and sharing data, the Consortium hopes to make significant progress in solving the puzzle of SDH-driven tumors and to develop better treatment strategies.
International Sarcoma Day in Spain
It is a pleasure to announce the celebration, for the first time in Spain, of the International Sarcoma Day, under the title "Beyond the disease: people, projects and words with soul". It will take place in Barcelona on July 9th. The sponsors of the event are AEAS (Spanish Association of Affected by Sarcomas), CSIC-IMF (Spanish Upper Council of Scientific Research) and Residència d'Investigadors (Researchers Residence).
This act will be dedicated to patients' reflections, to their projects "with soul" - memoirs, portraits, blogs, books...- with which they go beyond the disease and allow us making such a special travel with them.
We also invited a panel of prestigious experts on oncological pediatrics who will explain their experiences with those singular and vulnerable patients: kids.
See more here
The VCare Foundation, India, celebrates Cancer Survivors’ Day (CSD) in honour of those who have conquered cancer. On this day, VCare salutes their fighting spirit and the courage shown by them and their care givers in facing the disease and its treatment. Incepted in 1995 by V Care Foundation, CSD has now expanded to a full week program and this annual event is celebrated throughout India by other cancer support groups as well. Read more about the activities of this year’s CSD on VCare Foundation’s facebook page.
October 2017 / January 2018
NEW HORIZONS GIST 2017
New Horizons GIST is a conference that traditionally focuses on a large annual conference gathering over 50 representatives from 30 countries to discuss critical information about GIST that impacts the global GIST patient and medical communities.
The NEW HORIZONS GIST 2017 conference was held in Wayne, New Jersey, USA from October 1-3, 2017. The Conference Report as well as presentations and pictures are available on the website of the Life Raft Group, organizer of the conference in 2017.
More information about NEW HORIZONS can be found here.
Dr. Nikhil Guhagarkar, GIST patient from Mumbai, India, speaks about the holistic approach he took when diagnosed with GIST, with a special focus on nutrition and healthy living with GIST. The webcast was produced in cooperation with the Life Raft Group and can be accessed here: https://cc.readytalk.com/cc/playback/Playback.do?id=6z5bb5 (no password necessary, just type in your name).
“Harvesting Patient-generated information from internet discussion forums”, CTOS 2017
During the CTOS (Connective Tissue Oncology Society) 2017 conference in Maui, Hawaii, SPAEN Board member and Chairman of the Dutch sarcoma patient platform Gerard van Oortmerssen gave a presentation on a project aiming at harvesting information from patient discussions on the Internet. Read more.
Bone Cancer Awareness Week 2017
On Sunday 8 October 2017, the Bone Cancer Research Trust will be launching Bone Cancer Awareness Week to raise Bone Cancer Awareness of all nine forms of primary bone cancer and non-cancerous tumours that arise in the bone throughout the week. Awareness of primary bone cancer saves lives. During Bone Cancer Awareness Week Bone Cancer Research Trust wants to reach as many people as possible to raise the profile of this rare and brutal disease.
For more information and to see how you can get involved please see www.bcrt.org.uk/bcaw
"Sarcoma patients. Between health policies and innovation in rare cancers."
This is the theme of the meeting held on October 6th in Udine, Italy, committed and organized by the “Associazione Paola”, under both the patronage of the President of the Italian Republic and the auspicies of the Italian Society of Medical Oncology.
“Reducing inequalities in the access to available treatments for sarcoma patients, who are reported to have the poorest experiences of any cancer type, is a challenge and a responsibility of all the stakeholders involved. None of these patients should ever feel invisible or neglected", says Ornella Gonzato, president of Associazione Paola.
From “neglected diseases” to “a sea of opportunity”, searching for innovative solutions in order to reduce, as much as possible, the 5-year overall survival rate gap between rare cancers and common ones. This is what emerged at the end of the meeting, entitled “Sarcoma patients. Between health policies and innovation in rare cancers”, held in Udine (Italy) on October 6th, committed and organized by Associazione Paola per i tumori muscolo-scheletrici.Onlus.
“The main topic was innovation at all levels in order to find new and appropriate solutions to assure the quality of care, avoiding any risk of discrimination for patients, due to the rarity of these diseases. At the same time, innovation requires both attention and support by health policies to better integrate it into national cancer plans.“ said Ornella Gonzato, founder and president of Associazione Paola.
Firstly, innovation in the organization of care through the newly set up of “Rete Nazionale Tumori Rari (RNTR)”. “The first question posed by rare cancer patients is where to be treated instead of how to be treated. The Rete Nazionale Tumori Rari can give the correct answer, both referring patients to an appropriate centre of expertise and avoiding migrations, if not strictly necessary ”, affirmed Paolo Casali, the founder of the RNTR. Innovation in the organization of care is also related to the identification of the referral centres, already included in the EURACAN, which will then be part of the RNTR.
Innovation regarding surgical treatments by using even more suitable new materials and new technologies for bone segment reconstruction, results in shortening surgical time and improving functional results and quality of life.
Innovation meant as patient empowerment in order to make them more aware and involved in their own disease pathway; this is valuable especially in rare cancer patients because they address a higher degree of uncertainty than those affected by common cancers.
Innovation in research, as pointed out by a member of the European Parliament (MEP) Isabella De Monte “a field in which both the scientific and the political world must commit to and invest, especially when it comes to rarer diseases".
“Both basic and translational research, that is the research required to bring new scientific findings to clinical trials (from the bench to the bed-side), crossing the so-called valley of depth, need greater incentives, together with new development models, involving profit and no-profit partnerships, as it happens through venture-philanthropy models", underlined Ornella Gonzato.
Moreover, innovation concerning both clinical research methodology and regulatory pathways, in order to be more flexible and appropriate for rare cancer patients.
And furthermore, innovation in new drugs in development, such as iNPG-pDox, for the treatment of pulmonary metastasis from sarcoma. Its “mechanism of action is completely innovative and not comparable to any other existing drug at the moment”, as referred by professor Mauro Ferrari, President and CEO of the Methodist Research Institute, disclosing new possible and hopeful scenarios for patients.
“All these efforts foster rare cancer patients’ hope even if several challenges still exist, which require us to keep high our commitment and attention”, stated Ornella Gonzato
On Sunday, September 3, 2017, the 10th Jubilee Oncorun Together for Health was held which, like every year, was dedicated to cancer prevention and all people struggling with cancer and their families. There were nearly 2000 participants who covered the lap 750 times (16 447 km) around the Center of Oncology in Warsaw - which resulted in the amount of about 70 000 PLN, which will be allocated to support the neediest patients – charges of Oncorun and also for preventive activities.
- Please read more here: http://www.onkobieg.pl/ and in the pdf Oncorun Report (260 KB)
- See a video about the Oncorun
On Saturday the 8th July 2017, The Max Foundation arranged a grand celebration of GIST Awareness Day (GAD) for its Support Group Arm Friends of Max at the TATA Memorial Hospital, Mumbai, India.
Do you want to learn more about primary bone cancer? Then have a look at the new magazine of the Bone Cancer Research Trust that was just released end of July for the first time: https://issuu.com/bonecancerresearchtrust/docs/united
The BCRT is a non-profit organization in the UK providing information on all kinds of bone cancers and a full member of SPAEN.
Side effects are practically inevitable, but can affect a patient’s quality of life and ability to maintain their drug regimen immensely. Therefore, the Life Raft Group, a patient group with a focus on GIST, set up a free tool to help patients gain valuable insights into symptoms and side effects management: SideEQ.
Only this year, the National Leiomyosarcoma Foundation announced a collaboration with the Life Raft Group on this specific project, allowing also LMS patient to profit from this tool. For more information, please check out the website: https://www.mysideeq.org/
Both organisations are non-profit organizations based in the USA and full members of Sarcoma Patients EuroNet (SPAEN).
New patient organization in The Netherlands
One picture says it all: The Max Foundation and Friends of Max, India
The Max Foundation together with The Friends of Max held the Mumbai City Chapter Meet at the Tata Memorial Hospital on Sunday 14th May with over 230 participants, the physicians Dr Manju Sengar and Dr Suresh Advani and the Volunteers and the Max Foundation team, that made it all possible.
Find Friends of Max here.
On May 20, 2017, the first ever EEA (English East Africa) International PAG (Patient Advocacy Group) Summit was held in Nairobi, Kenya. It was attended by over 160 CML, GIST and sarcoma patients from Kenya, Sudan and Ethiopia.
The aim of the summit was to bring together patient leaders from Eastern Africa to share and learn from each other, but also to address the challenges the group and the region is facing. A working group was formed responsible for spearheading communication and activities across the region.
Please find more information about Henzo Kenya here.