Sarcoma and PEComa Investigation and Action Leadership is committed to research, education, advocacy, and support for those diagnosed with sarcoma cancer.
In early January of 2008, our Founder, Phyllis Domm, was diagnosed with an extremely rare sarcoma. After a few days of initial shock and awe by the disease and the rare company Phyllis was now keeping, she began to get a perspective on what her and others around the globe were dealing with. By the end of January, although sufficiently daunted by the challenges ahead, Phyllis felt totally committed to figuring out how she could use her talents to help herself and others. Dr. Domm's initial journey is described in a published article in Women & Cancer "Managing a Rare Cancer Diagnosis". You can also read the PDF version on our site.
Phyllis Domm identified these problems and challenges:
- Sarcomas are rare and dangerous cancers in adults
- They are less than one percent of adult cancers
- Less than 10,000 cases of soft tissue sarcomas and bone sarcomas are diagnosed per year (compared to 190,000 of breast cancer)
- Sarcomas encompass 50 different tumor types
- Sarcomas are undiagnosed, complex and dramatically under resourced
- Treatment protocols are unknown because of rarity and diversity
- Most patients who die from Sarcoma have treatment resistant metastatic disease
The sPECial Fund begins to tackle these challenges.
- Research focused at the biology of several rare sarcomas and the molecular pathway links they share with other more common cancers (melanoma, lung and breast seem to be promising connects)
- Support only research which fosters best in class collaborations among major institutions
- Provide new Sarcoma patients and their caregivers support through web resource information access and direct support. The focus is patient personal accountability and advocacy
Working with the best of the best researchers and institutions, we have identified the following potential research solutions:
- Identify the biology of individual sarcomas especially looking at the molecular levels
- Aggregate the rare and more common cancers by common molecular pathways which cause tumor growth or inhibit cell death
- Target existing and known therapeutic drugs at the specific biology and molecular pathways
We also provide patient focus and support. The volunteer effort is already serving patients across the country who are newly diagnosed or seeking new direction for their Sarcoma cancer.
Your Support is needed, and there are several ways to help. Visit our site page How to Help for more information.