BENEFITING: Dysautonomia Project Inc
EVENT: POTS Pi Day 5k
EVENT DATE: Mar 11, 2017
Marisa Coloney wrote -
"I don't want others to have to struggle to find knowledgeable medical help, the way we did." Tava Wilson Tournant
This fun run/walk will benefit The Dysautonomia Project which is a 501.c3 not for profit organization whose goal is to raise awareness of Dysautonomia. Dysautonomia involves disorders of the autonomic nervous system, and usually involve abnormal symptoms in many organ systems, including cardiac, gastrointestinal, neurological, and pulmonary, as well as others. Dysautonomia, an invisible illness, may be one of the most misdiagnosed medical conditions of all time. The biggest problem in autonomic medicine today is the lack of knowledge about dysautonomia in communities and especially community based physicians.
Currently TDP is working in conjunction with Largo Medical Center to open an Autonomic Center of Excellence in Pinellas county where people with autonomic abnormalities may come for medical and emotional support. TDP, together with Largo Medical Center, has the building and lead physician in place. We are working diligently to train other medical personnel. TDP is also now conducting CME courses for medical personnel so they can be trained in disorders of the Autonomic system and how to treat them. Currently this is rarely taught in medical and nursing school programs, meaning there are few medical personnel who are equipped to handle patients who present with autonomic dysfunction.
This effort is personal for me. I am blessed beyond measure to be the mother of Christina Tournant, who voluntarily gave up her fight with POTS/Dysautonomia on March 5th, 2015. Christina loved math, so naturally Pi Day (3/14) was her favorite. Since Pi day falls on a Tuesday, we are holding the event the Saturday before (3/11).
Lake Seminole Park
10015 Park Blvd N
Seminole, FL 33777
Race time is 9:00am for 5k. Everyone should plan to arrive and be ready by then.
One mile walkers will start at 9:30
Exercise trail is located at the NE corner of the park. Enter the park and go straight and then curve to the right and keep going past the boat ramp to the 3 parking lots about 100 yards ahead. The event set-up will be at shelters 12 and 13, which are close to these 3 parking lots and the trail.
This fundraiser is dedicated in honor of my childhood friend, Christina Tournant. For those of you that are unaware, Christina suffered from an autonomic disorder known as Postural Orthostatic Tachycardia Syndrome or POTS for short. POTS is just one of many autonomic disorders that fall under the category of Dysautonomia. However, she was so much more than just her disease. Christina was always one who wanted to be involved in everything. In high school, Christina won numerous awards, both for athletics and academics. Full of passion for knowledge, Christina was valedictorian of her high school and was accepted at her dream university: The Massachusetts Institute of Technology (MIT), in Cambridge, MA. Throughout these years of achievement, Christina suffered from numerous unusual symptoms and spent MANY hours in the offices of a variety of medical specialists. Christina was finally diagnosed with Dysautonomia after a friend suggested this as a possibility. Following her diagnosis, we were given misinformation or no information regarding the many symptoms she suffered from or what to expect. Christina was essentially led to believe that she could control this by "thinking positive thoughts." They told her she would grow out of it and should go ahead and swim for MIT. The Dr's did this because they did not know enough about Dysautonomia to be able to educate us, and unfortunately made it seem like it was not a big deal (which was clearly not the case!!). In December of 2015, her symptoms became unbearable and she was forced to take a medical leave of absence from school and return home. She suffered from an abnormally high heart rate upon standing, exercise intolerance, chronic fatigue, dizziness, fainting, brain fog, diminished concentration, anxiety, numbness, pain in her extremities and gastric colitis coupled with severe bloating. After a couple days of being home, she voluntarily gave up her fight against POTS. She was an incredible person, but an even more incredible friend to everyone she met and everyone who knew her miss the shining light she brought to our lives. POTS is actually a fairly common disease that suffers from a general lack of awareness in both the regular community and the medical community. Average diagnosis time for a patient with this disease is six years. Six years of indecisiveness, frustration, ineffective pain treatment and most importantly, depression. We don’t just want to change that, we NEED to change that and we’re willing to do whatever it takes to get where we need to be in order for that change to happen. For this to happen, the fundraising pages for this event are methods of both increasing funds and increasing awareness; which are key factors in bringing about positive change for patients with Dysautonomia.
The AWARENESS and better understanding of Dysautonomia by medical professionals is KEY, and Christina's story exemplifies why it is SO URGENT.
By spreading awareness about Dysautonomia and helping to fund research and treatment centers, I/we hope to help others who are undiagnosed or misdiagnosed, and are suffering. PLEASE help us do this by getting involved in our event.
No donation amount is too small, and if you are unable to donate, please share it with all of your friends in an effort to get the word out. This truly can make a difference in someone’s life. A difference that could very easily mean life or death. Thank you for taking the time out of your day to read this, you have no idea how much it means to each and every one of us!