In 2015 she was diagnosed with Multiple Sclerosis. While the diagnosis was hard the answers were a source of relief. Ann Marie uses her diagnosis to show others living with an invisible illness that you can celebrate the small stuff while living with a chronic illness.
Stupid Dumb Breast Cancer is Ann Marie Giannino-Otis’ fierce and unconventional initiative to promote awareness, early detection, and advocacy, with a special focus on how the disease impacts younger people. On behalf of her organization, Ann Marie has been featured in area publications, appeared on TV, local radio, and Huff Post Live, and hosts a series of monthly events. Since its inception in 2012, Stupid Dumb Breast Cancer has raised and contributed over $750,000 to a variety of breast cancer organizations, including Stand Up to Cancer, Duke Hospital, Wilmot Cancer Center, the Upstate Cancer Center, CancerConnects, Personal P.Ink and the Maureen’s Hope Foundation.
Ann Marie communicates regularly with a growing network of patients, their loved ones, and supporters via a variety of social media, where she candidly shares her thoughts and experiences and welcomes others to join the conversation, discover their own strengths, and discuss their journeys. The advocacy extends from breast cancer to MS and mental health.
Ann Marie Giannino-Otis
Ardra Shephard is the influential blogger behind the award-winning Tripping On Air, about her life with multiple sclerosis. Ardra has been a contributor to msconnection.org, mighty.com, and xojane.com, and is a script consultant for AMI’s series about dating and disability There’s Something You Should Know. In 2017 she was named one of the Top MS bloggers “in the universe” by feedspot.com, one of the top 25 bloggers by healthlabs.com, and was featured on Sickboy Podcast. Through her social media advocacy, Ardra is on a mission to change minds about what it means to be disabled, to have disability positively reflected as part of a diverse society, and to empower those with chronic illness to stake their place in the world.
In 2002, when Elizabeth was diagnosed with MS she had just been hired by Estée Lauder where her creative vision soon placed her Art Direction on the inside, front-cover pages of top fashion magazines—Vogue, Vanity Fair, Elle and W. Shifting her talents from fashion and beauty to the hospitality industry, Elizabeth was recruited to direct a 6-month global photo shoot capturing a portfolio of Starwood’s premiere properties. Elizabeth was able to hide her chronic illness for more then a dozen years, until MS symptoms began to surface, effecting Elizabeth’s balance and slowing-down her gait. She began to use a walking stick, as she navigated the hallowed, halls and climbed the storied, stairs of the infamous, Knickerbocker Hotel, holding complete oversight, re-launching the storybook branding and premiere advertising.
MS symptoms, may have changed Elizabeth’s ability to do some of the things she loves but her artistic vision and creative curiosity have only transitioned in new directions—a decade and a half after her first MS symptom, she is writing and illustrating a children’s book, learning to horseback ride, tracing her Swedish/ French ancestry, blogging about cooking recipes, collected during her travels and teaming with other creatives, developing marketing for non-profits—pro bono.
Rania was diagnosed with MS at 19 while in her first year of University. In the first years of being diagnosed and navigating her new way of life she did not speak much about her struggles. 2 years ago she decided to blog about her experience and since hasn’t been able to stop spreading awareness for this invisible disease. She started her blog as miss anonyMS, became and MS Ambassador for MS Limited in Australia and runs her own charity events with all proceeds going to finding a cure for MS as well as support services to help people living with MS.
I was diagnosed with relapsing MS in 2008, aged 28. I also live with polycystic ovarian syndrome and chronic urticaria/angiodema. I have experience in a broad caregiver’s capacity for my younger sister who has ulcerative colitis and who has also experienced mental health issues including PTSD, anxiety and depression. I work full time as a Spanish-English translator/analyst for a business intelligence company. In my spare time I work with multiple stakeholders (including pharma, patient associations/charities, clinicians, patients and the healthcare industry) to bring the patient voice into the healthcare journey, addressing issues that affect specific patient communities and cross-patient communities, as well as the healthcare industry.
Kate Milliken is a storyteller and creator. She founded MyCounterpane. storytelling platform that invites people living with chronic illness to tell their story from their own perspective. Rich in emotion and riveting MyCounterpane is a healing hub that embraces, engages and connects those living with chronic illness through the power of the word and self expression. Currently, there are communities in MS and Mental Health. Kate looks forward to expanding this community outside of illness organizations and reminding the healthcare world that it’s not always what is the matter, but what matters.