Published on: Nov 30, 2021 11:15:28 AM by SVA Life Sciences
Updated on: January 16, 2024
SVA Life Sciences, a division of SVA Consulting, is pleased to announce that Sara’s Cure (DBA Clear Cell Sarcoma Foundation) has been awarded a $1,000 donation to help pay travel expenses for people with Clear Cell Sarcoma (CCS) who participate in a clinical trial sponsored by Rafael Pharmaceuticals.
At the World Orphan Drug Congress, SVA Life Sciences distributed a survey to learn more about the challenges faced by advocacy groups and biopharma companies in the rare disease space. Survey respondents were eligible to win one of three $1,000 donations.
“Sara’s Cure represents the heart and soul of rare disease advocacy: parents founding an organization and dedicating their lives to seeking a cure for their child and others diagnosed with a rare disease. When a disease is rare, diagnosis is difficult, treatments are few or non-existent, and funding for research is scarce,” according to Andrew DeMarco, SVA Life Sciences Commercialization Strategist and Principal.
“When we began, we didn’t know another patient existed with Clear Cell Sarcoma. We began with a search for a doctor knowledgeable about CCS and open to collaborating. We quickly learned that not only was information scattered and scarce, there was also a serious lack of resources to do the research. We had to start from scratch and bring resources like cell lines, mouse models, and patients together along with clinicians and pharma to get to this point. We now have a trial open for CCS patients that has solid CCS preclinical data behind it. This has all been possible thanks to our CCS family and organizations like SVA and Rafael Pharmaceuticals that believe as we do, that a treatment and cure are possible!” states Lennie Woods, Sara’s Cure Executive Director (and Sara’s mom).
“At Rafael, we stand by our motto: ‘to save a life is to save a universe.’ Every single life matters. And that’s why we are committed to fighting rare cancers. While common cancers often have effective treatments available, many rare cancers have few to none, but these patients and their families deserve a fighting chance too. We have been working with Sara’s Cure since the beginning of the launch of our APOLLO 613 clinical trial for Clear Cell Sarcoma. We are grateful for their endless dedication, and we are honored to fight for their mission of combatting this devastating disease,” says Sanjeev Luther, President and CEO of Rafael Pharmaceuticals.
Sarcomas are rare cancers and CCS (Clear Cell Sarcoma) is a rare type of sarcoma, making up 1% of sarcoma cases. It is most often found in teens and young adults in their 20s. The average age at diagnosis is 25 years old. But CCS is so rare, we don’t know exactly how many people have it . . . Doctors estimate CCS survival rates by how groups of people with CCS have done in the past. Because there are so few CCS patients, these rates may not be very accurate. Studies estimate the 5-year survival rate of CCS is between 30% and 67%. (Source: cancer.gov)
Sara’s Cure was founded by Lennie and Denny Woods after their daughter Sara was diagnosed with Clear Cell Sarcoma in 2016. Sara’s Cure is a grassroots, race-against-time campaign focused on funding critical research to find a cure for Clear Cell Sarcoma. The mission of Sara’s Cure is 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 toward the cure.
To learn more about Sara’s Cure and make a donation, please visit clearcellsarcoma.org.
Rafael Pharmaceuticals is focused on the growing field of cancer metabolism. The company is developing a new, first-in-class category of metabolic oncology therapeutic candidates that are designed to attack hard-to-treat cancers by targeting the metabolic processes that these cancers need to survive, grow, and proliferate. Rafael Pharmaceuticals’ lead compound, CPI-613® (devimistat), is an investigational anti-cancer agent that is being evaluated in ongoing and completed clinical trials. The company's investors include Rafael Holdings, Inc. (NYSE: RFL). On June 21, 2021, they announced they entered into a merger agreement with Rafael Holdings, Inc. to create a publicly-traded late-stage clinical oncology company focused on cancer metabolism-based therapeutics. For more information, please visit www.rafaelpharma.com.
SVA Life Sciences helps biopharmaceutical, biotechnology, and diagnostic leaders navigate a successful commercialization journey: the launch of their product and the company that supports it. Leaning on decades of expertise and learnings from SVA Consulting, we established SVA Life Sciences to partner with clients to tackle the complex technical and professional challenges associated with business growth and transformation. We are inspired by the people in the life sciences industry and share their passion for the product journey and improving the lives of patients.
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