The Manny Alvarez Foundation, founded in 2014, was created by the Alvarez family upon the diagnosis of Manual Alvarez. Manny was diagnosed with Alveolar Soft Part Sarcoma (ASPS), a rare, slow-growing, but aggressive pediatric cancer. An otherwise healthy 22 year old young adult, Manny discovered lumps on his calf and bicep areas. After significant testing it was discovered that he had ASPS and the disease had metastasized into his lungs and was categorized as stage four.
The foundation’s motto, “Spear Sarcoma,” came about for Manny’s love of spear fishing and boating.
What We're Fighting For
Our mission is to raise funds to support ASPS-specific research and bring awareness to the disease. By building relationships with clinicians and researchers, we will help identify and fund research relevant to ASPS.
Why We're Fighting
Alveolar Soft Part Sarcoma (ASPS) is an atypical sarcoma, because it involves a specific breaking and joining event between two chromosomes, called an “unbalanced translocation.” Highly vascular tumors are formed on soft tissue within the body. Symptoms are often undetected until the disease has metastasized and secondary symptoms are present. In Manny’s case, the secondary symptom appeared as a respiratory issue.
ASPS is among the least common sarcomas representing approximately 15-80 cases nationwide each year – less than 1% of sarcomas. Patients range from adolescents to young adults.
Because of the rarity of this type of sarcoma, treatment options are often extremely limited. Forms of treatment such as chemotherapy, surgery and radiation have not proven fully effective for the long-term treatment of the disease. Very early clinical trials utilizing inhibitor therapies have shown some response, but further research is required. Because the clinical trials are still in early stages, long-term prognosis of patients is unknown.
Sarcoma research received less than 1% of cancer research funds.