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Shining a Light on a Common, Yet Little Understood Group of Disorders

“Pi” Day Give Day & Under the Umbrella Gala

Cindy Stovall

Today is Tuesday, March 14th or “Pi” day (3.14), as it is known to many in mathematics and the sciences and those who celebrate the birth of Albert Einstein.  For the hardworking board, staff, and volunteers at The Dysautonomia Project, it is a very important day for outreach, education, and yes, giving. So, let’s learn – what dysautonomia is, what TDP is doing in Tampa Bay and beyond, how you can help, and how “Pi Day Giving Day” and the big annual “Under the Umbrella Gala” are truly making a difference.

What is Dysautonomia?

So many of the human body’s functions are involuntary. Our hearts beat. We breathe. We digest food. Our blood circulates and maintains blood pressure and temperature. Our pupils dilate. We perspire and digest. These are the functions of the “autonomic” or “automatic” nervous system. But when the “signals” are interrupted, for a variety of reasons, these involuntary or automatic functions can weaken, break down, or stop all together – impacting one or multiple organ systems.

The term “dysautonomia” is an umbrella term covering the approximately 15 distinct disorders, including the better known Parkinson’s Disease, and Guillian-Barre Syndrome. Dysautonomia disorders can have a profound impact on quality of life and the ability to do many of the activities of daily living. Symptoms can range from mild to debilitating, but what’s important to remember, is that faster diagnosis, informed and targeted treatment regimens, and knowledge, knowledge, knowledge, are the keys to a return to a higher quality of life for so many suffering with a dysautonomia disorder. Learn more about the specific disorders of dysautonomia here. 

 

Authored by TDP Co-Founder Kelly Freeman. Purchase here.

 

The Dysautonomia Project was founded in 2014 by Karen Crown and Kelly Freeman to try and fill the void of information related to the “dysautonomias” and to join the effort to improve the health and lives of patients through advocacy and education. Current Executive director, Alexandra Key , prolific in her philanthropic pursuits, carries the TDP mantle forward for the coming year.

 

 

Registry Tampa Bay spoke with The Dysautonomia Project’s Board President, Angela Hawkins, also a long-time community philanthropist, who has a very personal stake in advancing the mission of TDP. Her daughter, suffering from dysautonomic weakness, progressing to almost complete debilitation, was misdiagnosed for several years. Now, with a proper diagnosis and treatment, Hawkins’ daughter has had improvement in her symptoms, and as a result, her life.

“She’s doing so much better since being diagnosed,” says Hawkins. “This is the type of impact an organization like TDP can make. Education and better diagnoses can be the difference between living a life of productivity and independence, and one of debilitation. TDP is such an important organization in advancing that education, and I’m so proud to be a part of it.”

 

What can I do Today? –  Pi Day Give Day 

Today’s the day – a special giving Tuesday for “Pi Day” and the Dysautonomia Project. The day is special and also solemn because it is dedicated to the memory of Christina Tournant, a freshman student at MIT who suffered from POTS for years, but was not properly diagnosed. As her symptoms advanced, and her suffering went unvalidated by the medical community, she gave up hope and ended her battle in 2015 at the age of 17. Had more education in diagnosis and treatment been available, the outcome, undoubtedly, would have been quite different. TDP has partnered with Christina’s family to support their call for more education, faster diagnosis, and targeted treatments. Christina’s Mother, Tava explained that Pi Day was Christina’s favorite day of the year because “She loved math.”
And so, you understand why it is so important to support the dissemination of actionable education – it literally can save lives.

GIVE TODAY and your donations will be matched up to $14,000.

 

What Can I Do Moving Forward? – Under the Umbrella Gala

The Gala, created and chaired by Angela Hawkins in 2019, has continued to be the key annual fundraising event each October. Funds raised at that first gala were transformational in advancing TDP’s mission and increasing its visibility in the non-profit world and the medical community. The most recent Gala, held in October at the Pelican Golf Club was a sold out, smashing success, leading to a key initiative to educate resident physicians in the diagnosis and treatment of dysautonomia conditions. (See below). See the flip book of last year’s gala here.

The Crisorio Group: Ellen Crisorio; Jeff Crisorio; Randy Crisorio; Dr. Will Greenberg; Nancy Greenberg; Emily Harkins; Dr. David Rothberg and Deborah Rothberg
Under the Umbrella Gala 2022
Patient, Alexis Dunn & Her Mom, Lisa

For 2023, the Crown Cadillac dealership in Pinellas Park will be transformed into a stunning event space under a sky full of hanging umbrellas and lighting. Attendees will enjoy delicious culinary offerings, a fantastic jewelry raffle where the sparkling, high-end donated pieces will be awarded with a spin of the wheel, an opportunity for fantastic experience packages, and a paddle raise to ignite the fundraising effort. The Hawkins Family Foundation and Crown Automotive Charities are this year’s presenting sponsors. If you’d like to attend, become a sponsor, or get more information, click here.

 

Educating New Generations of Providers

To date, the disorders under the DTP umbrella present a broad array of signs and symptoms that can be difficult to recognize and diagnose for even the most experienced diagnosticians. It is considered one of the most misdiagnosed conditions of all time.  The average time elapsed from emergence of symptoms to diagnosis is six years. TDP is leading the way to significantly lessen that six year average.

Dr. Glen Cook, Director Autonomic Disorders Clinic – Walter Reed Natl. Military Medical Center

One of the most consequential impacts of fundraising from the 2022 Under the Umbrella Gala, was the funding of The Residents Course, and intensive training program developed by TDP advisor Dr. Glen Cook and a faculty of seven of the world’s top experts in the diagnosis and treatment of Dysautonomia conditions. Conducted in January, the faculty and 36 medical residents from across the US came to Tampa Bay to participate in the curriculum which focused on the recognition, diagnosis, and treatment of the disorders under the dysautonomia umbrella. No doubt, this type of targeted instruction will significantly improve the early detection, treatment and patient outcomes.

“These are the types of high impact, results-oriented programs we at TDP all work so hard to see come to fruition,” says Hawkins. “We want to make a difference in the quality of people’s lives that are affected by Dysautonomia.”

No Doubt, The Dysautonomia Project has transformed in a very short time, “from a Tampa Bay grassroots initiative into a global leader in dysautonomia education.” We all have an opportunity to be a part of that progress. www.thedysautonomiaproject.org

 

 

Of Note:

Just last month, the Washington Post did do a feature article on a specific dysautonomia disorder called postural orthostatic tachycardia syndrome – or POTS. Hallmark symptoms include racing or rapid heart rate with accompanying weakness, brain fog, dizziness, and fainting. The gist of the article wasn’t just about the difficulty in diagnosing the source of the arrhythmia, but it’s newly unearthed relationship to COVID, and most importantly, how difficult it can be to find treatment.

Read the full article here. https://www.washingtonpost.com/wellness/2023/02/27/pots-heart-fainting-long-covid/

 

 

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