Standing Up to POTS Initiatives
Initiated Standing Up to POTS Research Fund
Standing Up to POTS is dedicated to funding research that will help to improve the quality of life for people with postural orthostatic tachycardia (POTS) now. The Standing Up to POTS Research Fund supports and encourages research that can lead to improved diagnosis and treatment for POTS patients. The fund provides monies for research leading to publication or public presentation by people in the medical or research communities. For more information, click here.
Publishing Original Research and Awareness Articles
Standing Up to POTS is actively writing and submitting manuscripts to broaden the awareness about postural orthostatic tachycardia syndrome in both the medical community and general public. We are proud to run our own independent research projects that result in publication in scientific journals. We are also thrilled to be wirting articles in other venues to help increase awareness in the general public. Please click here to see a full listing of our publications.
Partnering With The Mighty
Postural Orthostatic Tachycardia Syndrome | The Mighty Partnership | Standing Up to POTS
We're thrilled to announce a new partnership that will bring our resources in front of The Mighty's wide-reaching readership. We will now have a growing home page on The Mighty and appear on many stories on the site.
The Mighty is a story-based health community focused on improving the lives of people facing disease, disorder, mental illness and disability. More than half of Americans are facing serious health conditions or medical issues. They want more than information. They want to be inspired. The Mighty publishes real stories about real people facing real challenges.
Raising Awareness in Thrivent Magazine, a Fortune 500 Company
Lily and Kate Pederson's book, My Life with POTS, was spotlighted in the Meet the Member Section of Thrivent Magazine in December, 2015. The book chronicles Lily's two year struggle with postural orthostatic tachycardia syndrome from her own perspective. The success of this book in fundraising for POTS research and the support of Thrivent was the cornerstone for the creation of our non-profit organization. We were honored that Thrivent gave Lily the cover of the magazine as well. Delivered to 1.2 million homes across the United States, we are thrilled to have POTS spotlighted in this way. To read or print a .pdf version of the article, please click here.
Creation of a Suicide Prevention Board
At Standing Up to POTS, we recognize the burdens that come with chronic illness and seek to address those concerns in order to improve quality of life. Several people within the POTS community have died by suicide, and others have made attempts at death by suicide. Every life matters! We feel that the key to suicide prevention lies in addressing the underlying issues:
- Lack of quality medical care to treat complex, chronic medical illnesses like POTS, myalgic encephalomyletis/chronic fatigue syndrome, fibromyalgia, Ehlers Danlos Syndrome, gastroparesis and mast cell activation disorder
- Physical issues that lead to decreased mobility, poor memory, confusion and overall poor quality of life
- Many people, including physicians, blaming the chronic illness on psychological conditions
- Judgmental and emotionally abusive family and friends
- Withdrawal of love and/or support due to lack of understanding of the true impact of chronic illness on the ability to participate in life
- Feelings of isolation and loneliness
- Patients' perception that they are a burden to family and friends
- Loss of hope for recovery or improvement in quality of life
- Financial pressures from medical bills, medication, and the inability to work
This Board is committed to working toward improving the quality of medical care and quality of life for those with chronic illnesses. The Suicide Prevention Board Members are:
- Jill Brook, M.A. in Health Psychology, PatientCounts.org
- Laurie LeLacheur, The Face of Dysautonomia
- Greta Hochstetler Mayer holds an Ed. D. in Counselor Education and is a licensed professional counselor. She is Director of Prevention and Community Engagement for the Suicide Prevention Coalition
- Cathy Pederson, Ph.D. in Physiology and Neurobiology, Standing Up to POTS
Support groups for people with POTS
This closed Facebook group is for adults with POTS or parents experiencing POTS through their children. This intimate group shares provides support to its members on their bad days, and cheers for the small accomplishments that mark progress. Links to the latest press releases and POTS research are also shared in this group. Click Standing Up to POTS - we would love to have you join our community!
Standing Up to POTS: Teen Support on Facebook
This closed Facebook group is only for teens and college students who are battling POTS. Adolescents with POTS have unique issues related to school, peer pressure, and dealing with family that adults don’t have. We started this group to allow teens to talk with each other about these issues to decrease isolation and increase a sense of community. We are eager to add more teens to this group! Teens and college students, click Standing Up to POTS: Teen Support to join our online community.
3rd Annual Standing Up to POTS 5K September 2016
Partnered with Wittenberg University's Pre-Health Club, Standing Up to POTS had its biggest and best 5K to date by all measures. Almost 300 people gathered on Saturday, September 24 to get some exercise and make a strong statement of support for the POTS community. We had 12 POTS families represented at this event who had a chance to mingle and exchange stories with others who understand the trials of living with chronic illness. This fall we raised almost $14,000 to benefit Standing Up to POTS as we work to improve the quality of life for people with POTS. Thank you to all who supported us, including our corporate sponsors: Thrivent Financial, Wittenberg University, Kohl's, Merchants National Bank, Comfort Living, Kroger, Ohio Solar Electric, Kreider and Krogg DDS, and Coldwell Banker Heritage Roediger.
Standing Up to POTS 5K Walk/Run April 2016
Standing up to POTS was thrilled to be the beneficiary of a 5K Walk/Run that was coordinated by the Pre-Health Club of Wittenberg University. Nearly 100 people joined together on a snowy, blustery Saturday morning on April 9, 2016. While the weather was cold, our hearts were warm. Families living with POTS joined together for the event and to meet others who understand life with chronic illness. Some ran, others walked, and a few rolled their way toward the finish line in their wheelchairs. We raised over $12,000 at the event. Thanks to all who supported us, including our corporate sponsors: Wittenberg University, Thrivent Financial, Comfort Living, Dr. Keith Boor MD, Dr. Gary Thomas DDS, Meijer, Dhingra Orthodontics, Law Office of John M. Spencer, Springfield Fire and Rescue, Wells Fargo Home Mortgage, Kreider and Krogg, DDS, and State Farm - Larry Hines.
The Standing Up to POTS 5K walk/run was coordinated by the HEART and Pre-Health Clubs at Wittenberg University in Springfield, Ohio. On May 2, 2015, approximately 100 people joined together to raise money for POTS research and awareness about POTS. We were thrilled that six people with POTS were present, with a variety of physical abilities. It was a great opportunity to bond together and share our mutual struggle. It was an inspiring day!
More than $4200 were raised that will be spent raising awareness in the medical community and for POTS research. We hope to continue to look for opportunities to raise awareness as we financially launch this organization.