Sarcoma Advocacy Organizations

Across America, non-profit organizations such as Rein in Sarcoma, have been created to meet the needs of sarcoma patients/survivors and to fund research to find cures for sarcoma cancers.  Some of these serve a national focus some a local or regional focus and others have been developed to advocate for patients of a particular type of sarcoma. Here is a brief description of those  we are aware of along with links to learn more.

National Sarcoma Advocacy Organizations

Sarcoma Alliance

Mill Valley, California

The Sarcoma Alliance strives to improve the lives of people affected by sarcoma through accurate diagnosis, improved access to care, guidance, education and support. Offers Extensive website and a Peer-to-Peer Program. Sarcoma Alliance refers patients to sarcoma centers throughout the United States and through their Assistance Fund provide financial support to those seeking second opinions from sarcoma specialists.

Sarcoma Foundation of America (SFA)
The mission of the Sarcoma Foundation of America (SFA), based in Maryland, is to advocate for sarcoma patients by funding research and increasing awareness about the disease. The organization raises money to privately fund grants for sarcoma researchers and conducts education and advocacy efforts on behalf of sarcoma patients. Its website has significant information on patient resources and research funding, along with a sarcoma patient registry.

SARC
SARC (Sarcoma Alliance for Research through Collaboration) is a non-profit organization, based in Michigan, dedicated to the development and support of research for the prevention, treatment, and cure of sarcomas. Clinical trials are available at their website.

 

Regional and Local Sarcoma Organizations

Amschwand Sarcoma Cancer Foundation
Houston, TX
ASCF mission is educating the public about sarcoma, supporting those with the disease, and encouraging sarcoma-specific research. It was his dream that the foundation might be able to provide real hope and support to other sarcoma patients and their families. Since our inception in February of 2001, ASCF has enjoyed many successes. We have helped establish a physician scientist program, which provides seed money to sarcoma researchers. We have offered temporary housing to numerous patients traveling to Houston for medical treatment through our Shared Families and Corporate Apartment Housing Programs. Even more, we have raised awareness of this deadly disease and the needs of those affected by it among members of both the general and scientific communities. The RIS New Patient Sarcoma Notebook was initially developed and patterned after a similar notebook of ASCF.

Kristen Ann Carr Fund

New York City

Its  mission is to raise funds and make grants to find treatments and cures for sarcoma. Also, to improve the living conditions of patients with sarcoma or other teenage and young adult cancers. Particularly noted for their Surgical fellowship at Memorial Sloan Kettering Cancer Center; Sarcoma Laboratory at MSKCC; Sarcoma Update newsletter; small grants to several other groups including Musicians on Call, Planet Cancer, SARC and NY Lifelab

Northwest Sarcoma Foundation

Seattle, Washington and Portland, Oregon

Works to provide hope, education, and support to sarcoma patients and their families in the Pacific Northwest, while investing in research to improve cure rates for sarcomas.

 

Specific Sarcoma Advocacy Organizations

Chordoma

Chordoma Foundation

Chordoma is a challenging and difficult to treat bone cancer that occurs in the head and spine in people of all ages. The Chordoma Foundation is a nonprofit organization working to improve the lives of chordoma patients by accelerating research to develop effective treatments for chordoma, and by helping patients to get the best care possible.

Desmoid Tumor

Desmoid Tumor Research Foundation

Founded in 2005, The Desmoid Tumor Research Foundation (DTRF) is dedicated to funding research for a cure for desmoid tumors. DTRF is the only foundation in the world dedicated to funding desmoid tumor research and finding a cure for this rare disease. We fund research projects at the world’s top sarcoma cancer research centers in both basic science and clinical trials

Ewings Sarcoma

1 Million 4 Anna Foundation

Addison, Texas

Their mission is to eradicate Ewing’s Sarcoma. To remain vigilant to the needs of suffering adolescents and their families.  Provide university scholarships for students who have battled, or continue to battle, the disease.  Fund promising Ewing’s research. Empower young cancer survivors and warriors in varying stages of their journeys through inspiration, education, and eradication.

 Brian Morden Foundation

Altona, PA
Founded in 2003 its missions is to fund Ewing’s Sarcoma and childhood cancer research, support patients, family, and staff of pediatric oncology units*, and provide funding for “Brian Morden Memorial” higher education scholarships

Go4theGoalFounation

Their mission is to improve the lives of children battling cancer (especially Ewings Sarcoma) by providing financial support, developing and implementing unique hospital programs, funding innovative research, and granting personal wishes. Through our first hand experience with pediatric cancer and our medical background, Go4theGoal provides the best practices to patients, their families, and the hospitals and staff that care for them.

GIST (Gastrointestinal stromal tumors)

GIST Cancer Research Fund
New York City
Purpose: To create funding to support research which is vital to the long-term survival of those coping with GIST; To provide patients and practitioners with more data on GIST;To provide information about GIST to the international community.

The Life Raft Group (LRG)

The mission of the Life Raft Group (LRG) is to ensure the survival of GIST patients while maintaining the quality of their lives. To accomplish this mission, the Life Raft Group devotes its efforts to five major program areas: Research, Treatment Surveillance, Information & Support, Patient Outreach & Assistance, and Advocacy.

Leiomyosarcoma

National Leiomyosarcoma Foundation
Purpose: Provide annual  patient education symposium series programs throughout the United States, partnering with cancer treatment research centers and research oncology;Promote patient advocacy on issues that affect research efforts, treatment advancements, clinical  trials, and drug development; Provide vigorous LMS research funding for promising LMS research projects that have the potential to accelerate treatment options for extending survival.

Tulsa, OK

LMSarcoma Direct Research Foundation (LMSdr) was created to bridge the gap between Leiomyosarcoma researchers and Leiomyosarcoma patients.

Osteosarcoma

The Foster Foundation

Garden City, New York

The primary goal of the Foster Foundation is to fund Osteo Sarcoma research that will eventually lead to a cure for this disease. The foundation has established a trust that assists in funding much needed basic research. These funds are awarded annually as grants to promising research groups.

The BOOST Registry and Biobank

University of Minnesota Masonic Cancer Center

The Biology of Osteosarcoma (BOOST) Registry and Biobank offers a single location where every patient with osteosarcoma and their relatives can participate in research. The hope is that by gathering information on a very large number of osteosarcoma patients and their families from all over the world, researchers can gain a better understanding of osteosarcoma incidence and survival which may lead to the ability to predict who is susceptible, detect tumors when they are small and eventually a cure. See related post.

Rhabdomyosarcoma

Focus on Rhabdo

A community focused on finding a cure for Rhabdomyosarcoma