SARCOMA COALITION MEMBERSHIP (alphabetical order, revised January 2023)
Angiosarcoma Awareness combines patient advocacy with research funding. The results of their efforts have led to numerous patients receiving care at sarcoma centers of excellence and have translated into rapid progress in understanding this disease on a molecular level with respect to disease research.
The Chondrosarcoma CS Foundation is a non-profit charitable (501c3) organization. Its mission is to create awareness and educate the public about Chondrosarcoma; support and advocate for patients and families that are suffering from this disease, and advocate to improve the treatment and care for patients suffering from this rare bone and soft tissue cancer. We advocate and promote positive changes including a viable treatment protocol, early detection, proper surveillance, more efficient and relevant information dedicated to Chondrosarcoma, and creating networking opportunities for sarcoma experts, patients, and caretakers to specifically address Chondrosarcoma. Most importantly we advocate for more compassionate care, cutting through red-tape and promoting the patient’s right to receive
treatment especially if it is potentially lifesaving.
The Clear Cell Sarcoma Foundation (formerly Sara’s Cure) is a Charleston, SC, based 501(c)(3) with one mission – to make Clear Cell Sarcoma survivable through education and scientific research while ensuring all patients and caregivers impacted have a voice and platform to enact change and strive towards the cure.
The Cynthia Solomon Holmes Foundation advocates on behalf of the Leiomyosarcoma (LMS) Cancer community. In doing so, we strive to increase public awareness about the disease, generate tangible funds to support research efforts and other tangible ways to support our patients and caregivers.
Focus on Rhabdo is a collaborative advocacy group of community members, researchers, and clinicians working together toward a cure of rhabdomyosarcoma.
ICAN® is a 501(c)(3) patient advocacy and research advocacy organization with a small staff of professional advocates assisted by hundreds of volunteers worldwide. With our volunteer leadership representing 17 different time zones, we literally work around the clock, focusing on our Personalized Medicine Cancer Case Navigation Programs, health information technology issues, legislative initiatives, and research projects.
We aim to provide you with the best patient advocates and the most effective cancer patient advocacy possible, with the twin goals of working to extend your life with the highest quality of life.
International EHE Support Group
Our patient-led support group is a collective of more than 2100 members representing 78 countries across the globe stricken with Epithelioid Hemangioendothelioma sarcoma, or EHE for short. Created in 2013 by EHE patient, Dawn R. Scott, we provide a warm welcoming community for EHE patients, family members, and caregivers to share their stories. Additionally, we have doctors, researchers, and clinicians in our group who have an interest in learning from our patients about this one in a million rare disease. We strive to provide nurturing support, helpful resources, and hope to our EHE patient community and to promote patient-driven research!
The Josh Powell Foundation (Synovial/ all Sarcomas Support) was founded in honor of 1LT William Joshua Powell to encourage those battling sarcoma cancer to KEEP GOING and to inspire others to do the same. OUR MISSION: INSPIRING THE WORLD – ONE BATTLE AT A TIME. We fulfill our mission by empowering the minds of newly diagnosed sarcoma patients, providing them with inspiration, encouragement, and motivation to keep going beginning on their first day of treatment.
Kids v Cancer promotes pediatric cancer research by identifying structural impediments at key junctures in the research process and developing strategies to address them. Kids v Cancer won the Peter Drucker Prize for Most Innovative Nonprofit in 2015 and the Fast Company #4 Top 10 Most Innovative Nonprofits in 2016.
Lazarex Cancer Foundation improves the outcome of cancer care, giving hope, dignity, and life to advanced stage cancer patients and the medically underserved by providing assistance with costs for FDA clinical trial participation, identification of clinical trial options, community outreach and engagement.
The mission of the Life Raft Group is to enhance survival and quality of life for people living with GIST – gastronintestinal stromal tumor, a rare soft tissue sarcoma, through patient-powered research, education, and empowerment, and global advocacy efforts.
Little Warrior Foundation (formally S P A D A Pediatric Sarcoma Foundation) Mission: To fund and find a lasting cure for childhood cancer, with a specific focus on Ewing’s Sarcoma. Fund projects and research that have a high potential for savings kids’ lives period; linking arms with similar organizations to maximize the efficiency and impact of our efforts.
Lizzy’s Legacy Lives On – John and Jennifer felt God had given them a wonderful base of supporters while going through Lizzy’s journey, so they were inspired to be that support for other families coping with osteosarcoma. Through this, they created a system of support by forming Lizzy’s Walk of Faith Foundation in honor of their daughter.
NCCS’ mission is to advocate for quality cancer care for all people touched by cancer. Founded by and for cancer survivors, NCCS created the widely accepted definition of survivorship and defines someone as a cancer survivor from the time of diagnosis and for the balance of life. NCCS represents the millions of Americans who share a common experience – the survivorship experience – living with, through and beyond a cancer diagnosis. That experience has value and can be a transforming, positive force. NCCS also knows that cancer survivors and those who care for them face many challenges.
The National Comprehensive Cancer Network® (NCCN®) is a not-for-profit alliance of 32 leading cancer centers devoted to patient care, research, and education. NCCN is dedicated to improving and facilitating quality, effective, equitable, and accessible cancer care so all patients can live better lives. Through the leadership and expertise of clinical professionals at NCCN Member Institutions, NCCN develops resources that present valuable information to the numerous stakeholders in the health care delivery system. By defining and advancing high-quality cancer care, NCCN promotes the importance of continuous quality improvement and recognizes the significance of creating clinical practice guidelines appropriate for use by patients, clinicians, and other health care decision-makers around the world.
Mission and Purpose: To support, advocate, educate patients and families – 3 websites and 3 Facebook groups. Support and fund LMS-specific research. Collaboration with other organizations to strengthen resource assistance support. Home of the International LMS Research Roundtable – 105 researchers strong – to advance precision research, to accelerate treatment options. Annual education programs for patients/families at sarcoma centers of excellence and through virtual meeting platforms throughout the year plus Research Connection Forums for patient access to researchers regarding current research studies/trials for LMS.
The Osteosarcoma Institute’s mission is to dramatically increase treatment options and survival rates in osteosarcoma patients through identifying and funding the most promising and breakthrough clinical trials and science. The Osteosarcoma Institute funds breakthrough clinical trials and science to identify new treatments, and ultimately a cure for osteosarcoma. In addition, OSI Connect is a free resource dedicated to supporting those impacted by osteosarcoma. This unique resource connects patients, families, and caregivers with knowledgeable osteosarcoma expert physicians to answer questions about all aspects of the disease.
Mission: The QuadW Foundation provides financial support to people and organizations pursuing innovative ideas and opportunities in the areas of higher education, sarcoma research, personally transforming mission experiences, and general philanthropy. Our accomplishments will reflect the light-hearted but whole-hearted spirit that Willie embodied.
The Rare Cancer Research Foundation is dedicated to curing rare cancers through strategic investments and innovative collaborations that facilitate effective research and accelerate deployment of promising therapies. Rare Cancer Research Foundation, Pattern.org. Pattern.org is part of the Rare Cancer Research Foundation (RCRF), a nonprofit dedicated to curing rare cancers. Pattern.org helps accelerate progress against cancer by helping patients donate their extra tumor tissue to cancer researchers. The organization does this by pairing patients with research projects and working with their doctors to transfer tissue donations to research labs.
Raven A. Fecunda’s Sunflowers of Destiny Foundation (RAFSOD Foundation) is for sarcoma cancer awareness. We spread love to those that need it the most. Sarcoma is known as the forgotten cancer & it is our goal for no one to feel alone or unloved. Sunflowers are strong beautiful flowers that always face the sun just as our daughter, Raven did. Raven’s dream of establishing a foundation became a reality in April of 2015. The RAFSOD Foundation was launched from Raven’s desire to create awareness about sarcoma cancer while providing financial support for sarcoma patients and their families.
We are the largest and best-known sarcoma foundation in the Midwest. We are a resource for patients and families touched by sarcomas, an uncommon and often misdiagnosed group of bone and soft tissue cancers that strike children and adults alike.
The Rutledge Cancer Foundation works to ease the impact of cancer on the lives of teens and young adults, raise survival rates, and find a cure for sarcomas and other solid tumor cancers. Focus areas: working as a catalyst for increasing awareness and early detection; funding patient programs and addressing unmet emotional and physical needs; supporting research for less toxic personalized cancer therapies.
Sam Day Foundation programs are centered around some of the most difficult cancers impacting young people, which means anyone with a certain sarcoma or brain tumor diagnosis could benefit from our organization’s efforts. For example, the most common age range to be diagnosed with Ewing Sarcoma is between 10 and 20 years old. This is why we reference children, adolescents, and young adults in our language, often using “kids” to group the entire age range.
Mission: The Sarcoma Alliance strives to improve the lives of people affected by sarcoma through access to care, guidance education, and support.
The SCFC was founded in 2010 in memory of Vera Arajs and other Canadians who have lost their lives to Sarcoma cancers. We are a volunteer-run national organization supporting patients and their families, while working with Canada’s leading research institutions in their efforts to eradicate Sarcoma cancers.
Mission: Sarcoma–Oma educates and assists Sarcoma patients in their search for treatment options; helps fund their travel-related expenses when appropriate; and funds Sarcoma research. Sarcoma patients worldwide derive comfort from the support provided by our Foundation.
Sarcoma Strong is an organization founded by, Matthew R. DiCaprio, MD, a practicing Musculoskeletal Oncologist who wanted to do more for his local sarcoma family. Our goals are simple. We want to be able to support our sarcoma families at every step of their journey with sarcoma. When first diagnosed, offering them guidance and sources for information to help them with critical decisions. Advocate for their care and specific, and often unique needs. And to generate funds to sponsor research that may improve the ability to diagnose and treatment sarcoma. We want the sarcoma community to Unite. Together we can have a greater impact and change the course of sarcoma for future patients and families.
Sarcoma UK is a national charity that funds vital research, offers support for anyone affected by sarcoma cancer and campaigns for better treatments. It is the only cancer charity in the UK focusing on all types of sarcoma.
Mission: A “lighthouse” for all rare cancers – advocating on behalf of all rare cancer patients, the scientific research community, treatment development, while educating and empowering patients on molecular diagnostics for a “long-term goal of creating an open access repository of genomic data; Sharing information and resources for the global cancer patient community.
Beloved founder and chairman, Alan B. Slifka, established this foundation in 1965 to support his passions for “a world safe for difference,” Judaism and Israel. In time, his interests expanded to include biomedical research and treatments for sarcoma and other cancers, and autism spectrum disorders. Today, the Alan B. Slifka Foundation board and staff continue to be guided by his passion and generosity. We seek to honor and expand his vision through thoughtful and informed philanthropic strategies.
On Friday, June 24, 2022, the member organisations of SPAEN voted to rename the association from Sarcoma Patients EuroNet (SPAEN) to Sarcoma Patients Advocacy Global Network, SPAGN for short.
SPAGN is the global network of Sarcoma Patient Advocacy Organisations who support one other and provide a common, influential, international patient voice. Our joy and passion in working across borders drive us to achieve necessary change together with our collaborators.
In SPAGN’s work, there remains a clear focus on achieving change for those affected by sarcoma. This is done on the one hand by providing information and assistance for national groups, but also by representing patients’ interests in international committees and interest groups.
SPAGN’s Vision is that one day sarcomas will be preventable or curable. Until then, patients, experts and other stakeholders are working together globally to
- drive sarcoma research
- improve early and correct diagnosis
- secure timely access to interdisciplinary expert-care
- provide patient-oriented information and support
The Summer’s Way Foundation has as its mission to find a cure for rhabdomyosarcoma and other rare childhood cancers, to provide community programs that support families and their children undergoing cancer therapy, and to recognize through a scholarship program for students that have faced adversity and excelled. In an effort to make rhabdomyosarcoma survivable, the Summer’s Way Foundation has established a Young Investigator grant program in conjunction with Friends of TJ, has supported promising rhabdo research at Cold Spring Harbor, and has sponsored several international rhabdomyosarcoma workshops that have brought the leading experts together to promote collaboration and to advance rhabdo research. Summer’s Way has also joined with several other rhabdomyosarcoma foundations and organizations, Maddie’s Promise, Friends of TJ, Sebastian Strong, Shephard’s Foundation and Focus on Rhabdo to create a rhabdo coalition. It is the hope that by coming together as a coalition we can further expedite an ultimate cure for rhabdo.
Friends of TJ Sarcoma Foundation – Located in Northeast Georgia the foundation focuses on helping patients and their families to cope with their financial needs. Our foundation reaches out to you as we fulfill our mission of helping to raise funds for treatment, hospitalization, and other personal needs.
We fund the scientific research of medical professionals from across the globe who are focused on developing innovative treatments for this rare form of cancer. We also have projects from top scientists and doctors waiting to be funded. Each of these projects could save lives. At Wendy Walk, we are also committed to helping patients and their loved ones cope with the unique challenges of a sarcoma diagnosis, so no family has to experience this journey alone.