In 2010 Marianne Vennitti was diagnosed with cryoglobulinemia and she felt alone with limited access to information and support. She promised herself that she would became an advocate for her rare disease. In her typical ‘AAA’ battery style she set out to learn everything she could and meet other people living with cryo, in order to find out how to be the best advocate and leader for her community. On this journey she met wonderful friends, mentors, and supporters via Social Media. Social Media was a great equalizing and networking tool.
In 2012 Marianne met Eileen Propp via Social Media. Eileen Propp also was diagnosed with cryoglobulinemia in 1997. Eileen and Marianne became good friends and recognized the potential for collaboration. They were both advocates at heart but together they could do more. Marianne and Eileen launched Alliance for Cryoglobulinemia in 2012, as a clearinghouse for people living with cryo, caregivers and healthcare professionals. In September 2012, Marianne and Eileen met in person! They were lucky to meet because Marianne travelled to California to attend the Stanford Medicine X Conference as an EPatient scholar!. The meeting inspired and solidified their commitment to the Alliance for Cryo.
With the gift of Marianne’s vision and networking, Eileen’s writing and research skills the two are establishing a strong foundation for the Alliance to grow. They launched the Alliance for Cryoglobulinemia website with the hope that it would be a place where people with cryo could volunteer their unique skills, as a collective community, to create a clearinghouse for cryo resources. The Alliance strives to make cryoglobulinemia information accessible for others living with this rare disease. The Alliance for Cryo welcomes volunteers as the entire project is sponsored on personal time and funds.
Marianne lived with chronic undiagnosed illness for 13 plus years and was finally diagnosed with cryoglobulinemia in 2010. The experience of chronic illness has not hindered her thirst for knowledge but rather empowered her to venture out via social media and face to face conferences to advocate for herself and her rare disease community! Marianne Vennitti was a professional Fitness Trainer, Nutritional coach, and always in peak physical form. Her work was guiding and teaching people of all ages how to enrich their lives by maintain a well balance healthy lifestyle though exercise, healthy eating and meditation. When Marianne became ill, she viewed the void of information as a challenge and dove into the web and social media in an attempt to understand her rare illness. The drive to learn and her inquisitive nature drove Marianne to volunteer and assist in the Rare Disease Education and Awareness Day February 29, 2012. In September 2012, Marianne Vennitti was honored as an ePatient Scholarship Recipient at the prestigious Medicine X Conference at Stanford University; for work in supporting the rare disease community via social media and innovative technology. She was fortunate to participate in the beautiful artistic project started by Regina Holiday called The Walking Gallery. Marianne also encountered an amazing organization called The Global Genes Project. Global Genes is one of the leading rare/genetic disease patient advocacy organizations that promotes the needs of the rare and genetic disease community under a unifying symbol of hope: Blue Denim Genes Ribbon™ . Marianne is now a member of the Global Genes Leadership Team and a contributor to the “toolkit” project – giving tools to others who want to learn to advocate, She was named on the Top 10 Rare Disease Advocate list and a Patient/Partner working with the Vasculitis Patient Powered Research Network. In 2014 Marianne was honored with the Vasculitis Foundation’s first ever, Online Patient Advocate Award for Cryoglobulinemia and other Vasculitic diseases.
Eileen Propp was diagnosed with Essential Mixed Cryoglobulinemia (EMC) in 1997. Eileen’s life up until that moment had been characterized by mysterious ailments, unexplained sickness, injuries and misdiagnosis. She was an athlete and a sign language interpreter despite her physical ails. Since her diagnosis of EMC, she has gained an understanding of the disease and how to manage it. Eileen has endured some 30 plus surgeries, surgical procedures, numerous broken bones, blood clots, internal injuries, heart failure and various misdiagnoses. She has also obtained an M.A. and a Ph.D. in Organizational Psychology specializing in disability, healthcare access and organizations. She has worked as an American Sign Language interpreter, Deaf-Blind interpreter and an advocate for people with disabilities. She currently runs a boutique consulting practice.