Standing Up to POTS was founded in 2014 and is a 501(c)(3) non-profit organization and works to improve the quality of life for people living with postural orthostatic tachycardia syndrome (POTS) through research, advocacy, and support. Because we are run completely by volunteers, 95.3¢ of every $1 received from all sources is spent on innovative POTS research (86.6¢) that aims to improve the quality of life for people currently living with POTS or advocacy efforts including The POTScast (8.7¢). So far, we have awarded $529,782 for POTS research!
Standing Up to POTS was founded by Dr. Cathy Pederson in 2014 after her daughter was diagnosed with POTS. Standing Up to POTS was created to generate a community who can support each other while pushing forward understanding of POTS. Dr. Pederson earned her Ph.D. in Physiology and Neurobiology from Rutgers in 1996, and has dedicated all of her professional research efforts to POTS, chronic illness, and quality of life since her daughter's illness.
Although postural orthostatic tachycardia syndrome (POTS) is not visible or typically life-threatening, it causes an enormous emotional, physical, and financial burden to POTS patients and their families. The burden to POTS patients is made worse by the lack of understanding and awareness by most people, combined with some of the unique features of POTS, such as inability to be upright, frequent fainting episodes, adrenaline rushes, severe brain fog, pain, and the unpredictable flares of these symptoms. The high degree of physical disability, cognitive impairment, pain, and disruption to schooling/career/life plans leaves these patients with myriad challenges to everyday living. They often struggle with finances, relationships, daily chores, grooming, maintaining proper nutrition and weight, communicating their needs to family and friends, finding supportive social circles, finding social activities that work for them, and maintaining good mental health.