Racing Hearts Day was founded in 2017 by Koreen Koehler with the help of friends, family, and community to raise awareness of the grouping of medical conditions known as Dysautonomia. The most common of these is POTS (Postural Orthostatic Tachycardia Syndrome) which is also very commonly diagnosed along with the sister illnesses of EDS (Ehlers-Danlos Syndrome), Fibromyalgia, and ME/CFS (Myalgic Encephalomyelitis / Chronic Fatigue Syndrome).
There are presently no FDA approved treatments for POTS, and those that are used often have a very limited efficacy in improving quality of life. Patients that were formerly healthy, have to face the outlook of a permanent future that shares a quality of life with Congestive Heart Failure and COPD (Chronic Obstructive Pulmonary Disease). It takes three times the energy for a patient with POTS to stand when compared to a healthy individual. Minor physical movements and activity will increase symptoms, which contributes to significant challenges in basic life tasks. As a result, at least 25% of those diagnosed are too physically ill to work.
Like all patients with these invisible illnesses, Koreen's life was dramatically changed when she fell ill after a surgical procedure. She decided that this would be her way to give back and help other patients in the process. In 2017, over $10,000 was raised at the inaugural Racing Hearts Day in Jackson, WI and this was used to support research at the former Aurora Dysautonomia Center in Grafton, WI. In 2018, Racing Hearts Day raised the bar by donating over $16,000 to the Aurora Foundation.
As is often the case with a worthy cause, other patients and their families soon followed in joining the effort. In 2019, Racing Hearts Day Ltd. was formed by this group in order to further the mission of spreading the word about Dysautonomia and providing local patient support. We ran another successful event and family fun day which yielded another large donation to the Aurora Foundation.
In 2020, with the rise of the COVID-19 Pandemic, Racing Hearts Day went virtual, allowing others to participate in our event and raise funds in spite of the limitations. While our total was understandably lower due to the impact on jobs, individuals, and businesses, we were still able to make a sizable donation. Our patient community has become larger as we unfortunately welcome the COVID-19 "Long Haulers" to the fold, as research is showing that they too are coming down with Dysautonomia as a complication of their infections.
In 2021, we held a virtual race but returned to holding an in-person family fun day as a result of the continued, changing landscape. Due to unexpected changes, including the closure of the Aurora Dysautonomia Center, we will be revamping our efforts for 2022 to continue our mission.
In 2021, we now celebrate our 6th year! We have learned so much and have raised a massive amount of awareness, as well as a substantial amount of funding for research and patient advocacy. We have also built a community of incredible, strong, resilient, and creative patients and volunteers to continue our mission. Due to the fact that COVID-19 may leave as many as 1/3 of all infected individuals with the long-term symptoms of Dysautonomia, the need for donations and research is even more than ever before - your generosity has the potential to make an even larger impact in the growing community of those who suffer from autonomic disorders.
There are presently no FDA approved treatments for POTS, and those that are used often have a very limited efficacy in improving quality of life. Patients that were formerly healthy, have to face the outlook of a permanent future that shares a quality of life with Congestive Heart Failure and COPD (Chronic Obstructive Pulmonary Disease). It takes three times the energy for a patient with POTS to stand when compared to a healthy individual. Minor physical movements and activity will increase symptoms, which contributes to significant challenges in basic life tasks. As a result, at least 25% of those diagnosed are too physically ill to work.
Like all patients with these invisible illnesses, Koreen's life was dramatically changed when she fell ill after a surgical procedure. She decided that this would be her way to give back and help other patients in the process. In 2017, over $10,000 was raised at the inaugural Racing Hearts Day in Jackson, WI and this was used to support research at the former Aurora Dysautonomia Center in Grafton, WI. In 2018, Racing Hearts Day raised the bar by donating over $16,000 to the Aurora Foundation.
As is often the case with a worthy cause, other patients and their families soon followed in joining the effort. In 2019, Racing Hearts Day Ltd. was formed by this group in order to further the mission of spreading the word about Dysautonomia and providing local patient support. We ran another successful event and family fun day which yielded another large donation to the Aurora Foundation.
In 2020, with the rise of the COVID-19 Pandemic, Racing Hearts Day went virtual, allowing others to participate in our event and raise funds in spite of the limitations. While our total was understandably lower due to the impact on jobs, individuals, and businesses, we were still able to make a sizable donation. Our patient community has become larger as we unfortunately welcome the COVID-19 "Long Haulers" to the fold, as research is showing that they too are coming down with Dysautonomia as a complication of their infections.
In 2021, we held a virtual race but returned to holding an in-person family fun day as a result of the continued, changing landscape. Due to unexpected changes, including the closure of the Aurora Dysautonomia Center, we will be revamping our efforts for 2022 to continue our mission.
In 2021, we now celebrate our 6th year! We have learned so much and have raised a massive amount of awareness, as well as a substantial amount of funding for research and patient advocacy. We have also built a community of incredible, strong, resilient, and creative patients and volunteers to continue our mission. Due to the fact that COVID-19 may leave as many as 1/3 of all infected individuals with the long-term symptoms of Dysautonomia, the need for donations and research is even more than ever before - your generosity has the potential to make an even larger impact in the growing community of those who suffer from autonomic disorders.