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TDP-Annual-Newsletter-2021-for-Printer (2) Flipbook PDF
TDP-Annual-Newsletter-2021-for-Printer (2)
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THANK YOU TO OUR 2021-2022 MAJOR DONORS
A MESSAGE FROM
ALEXANDRA KEY
TDP BOARD PRESIDENT
ANNUAL NEWSLETTER / 2022
Crown Automotive Group/ Hawkins Family
Since our last newsletter arrived in your mailboxes June 2021, TDP has experienced an unparalleled time of growth. As detailed in our cover story, we are embarking on the most groundbreaking work we have yet undertaken. With your support, TDP continues to grow as THE leader in dysautonomia education. Our mini-fellowship coming January 2023 is the first of its kind and expected to exponentially make dysautonomia known among doctors. We are thrilled about this model because we know education is the number one form of treatment. We’ve watched the time of diagnosis in Tampa Bay move from six years to mere months in response to sharing our book and providing education. Now to change that statistic for all of America - then the world! It’s absolutely possible with your support. It’s my privilege to think big as the new president of TDP and it’s easy to do when I see how far we’ve come since 2014. Back then it was YOU, our community partners, rallying to ensure the publishing of our award-winning book, and it’s been YOU all along - helping us provide education across the nation and now the world. Your support of our events like the inspiring Pi Day 5k and the beautiful Under the Umbrella Gala help provide hope for the future. There’s never been a more exciting time to join us in our mission. Please consider making a gift today. Sincerely, Alexandra Key / TDP Board President
The Tampa Bay Trust Company Network People Wendy and John Thomas Straighten Up Orthodontics Karen Crown Joan Kline
Dysautonomia is a general term used to describe any disorder of the autonomic nervous system. It is an invisible illness that may be one of the most misdiagnosed medical conditions of all time.
Focardi-Great Bay Foundation Carlton Ward/TWard Enterprises Matt & Maria Loder / Crabby Bill’s Brands Robert and Judy Cottrell Ellen and Randy Crisorio Greg and Carla Powers
The Dysautonomia Project’s mission is to educate healthcare professionals, patients, and communities about dysautonomia.
ALLPRO Corporation
GET INVOLVED Make a donation today at www.dysproject.org or use the enclosed envelope Take advantage of our FREE BOOK PROMO www.TheDysautonomiaProject.org/book-promo
CONTACT US 4592 Ulmerton Road Suite 104 Clearwater, Florida 33762 [email protected] 727-222-4626
FOLLOW US REGISTRATION # CH42034 . A COPY OF THE OF IC AL REGISTRATION AND FINANCIAL INOFRMATION MAY BE OBTAINED FROM THE DIV SION OF CONSUMER SERVICES BY CALLING TOLL- FREE (800- 4352 7 - ) WITHIN THE STATE. REGISTRATION DOES NOT IMPLY ENDORSEMENT, APPRA VO L O R RECOM ENDATION BY THE STATE. DISCLOSER STATEMENT The Dysauton mia Porject is a 50)(3c 1 ta-xempt, charit ble organizto . ourY gif t is ver y much ap erciatd and mya be fuly de uctible as a charit ble contribu on. A copy of our lates na cil erpo t mya be obtained by sendig your inqur y to: The Dysauton mia Porject 4592 Ulmer ton Road, Suite 104, Clear,wt FLorida 3 672.
TDP TO LAUNCH FIRST EVER DYSAUTONOMIA MINI-FELLOWSHIP The biggest problem today for patients with dysautonomia is difficulty in finding a doctor who can properly diagnose and manage their condition. Approximately 14 million in the United States suffer from autonomic nervous system disorders. Yet, there are only 51 board certified doctors in autonomic medicine and only about 150 providers in the US who diagnose and manage these conditions. The Dysautonomia Project (TDP) is committed to fixing this problem. In just three years, with your vital support, TDP hopes to double the number of doctors able to diagnose and treat dysautonomias through the first-ever formal program of study in autonomic medicine: a Mini-Fellowship for residents in Autonomic Medicine. The course, in partnership with the American Autonomic Society, will be led by an elite faculty including seven of the 51 board certified physicians in autonomic medicine. This includes Dr. Glen Cook, AAS Education Committee Chair and longtime medical advisor for TDP, who is serving as the Course Director. Thirty six medical residents will be selected from across the country to attend this intensive program of study
which will launch January of 2023 in Clearwater, Florida. The ground-breaking course’s unique structure fosters exponential spreading of education as each participant will present course summaries in their respective 36 medical communities across America. “The course is based on a long-standing, proven, minifellowship model for epilepsy and aligns perfectly with TDP’s mission to educate healthcare professionals about dysautonomia, an umbrella term to describe any disorder of the autonomic nervous system,” says TDP Founding Director, Kelly Freeman. Your support is needed more than ever as TDP embarks on this bold, uncharted journey to exponentially increase the number of doctors equipped to diagnose and treat autonomic disorders. For more information or to donate, please visit www.dysproject.org.
2022 PI DAY 5K CONTINUES TO UNITE PATIENTS
PLANNING UNDERWAY FOR THE ANNUAL GALA!
The 2022 POTS Pi Day 5K and 1 Mile Awareness Walk was a tremendous success, raising over $30,000 in support of TDP’s mission. From Florida to Nevada and Wisconsin to Kansas, more than 230 runners and walkers registered to participate both in-person and virtually. We even had an international runner join us all the way from Greece!
The Under the Umbrella Gala is the premier annual fundrasing event for TDP, with our last gala raising almost $600,000 for our mission!
As many of you know, TDP’s Pi Day 5K is hosted each year to honor the life of Christina Tournant, an exceptional young woman from Seminole, Florida who fought a lengthy battle with dysautonomia. Tragically, Christina took her own life on March 5, 2015. She left a note for her family, “Sorry, I couldn’t keep fighting.”
This year’s gala will be held at the exclusive Pelican Golf Club in Belleair, with special guest Dr. Glen Cook. For more information and sponsorship information: Marli Lutz, Director of Development (727) 222-4616 / [email protected]
CO-CHAIRS Kelly & Nate Freeman Ann & Carlton Ward HONORARY CHAIRS Angela & Kevin Hawkins
www.tdp.ejoinme.org/gala22
Tanya Repka & Tava Wilson
Christina’s mom, Tava Wilson, initially came up with the idea for the event because it centers around two of Christina’s favorite things: athletics and math. “I decided I wanted to find a way to honor Christina’s life while spreading awareness about POTS and dysautonomia. The goal for me, and those who love Christina, is to help those who are either undiagnosed, or struggling with the diagnoses and symptoms they are experiencing. The lack of education about dysautonomia in the medical community is still enormous, and The Dysautonomia Project is moving mountains to change this. I am blessed to be healthy, and I choose to use my health, time, and resources to do what I can to help TDP continue to educate and spread hope,” said Tava.
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TDP Board Member and Pi Day 5K chairperson, Tanya Repka, has been involved with this project since its inception. “This event gives TDP a platform to educate its local community about POTS and dysautonomia while also providing an inclusive environment for patients and their families to connect with others who understand their struggles. It has been my privilege to chair this event for the last six years and help honor Christina’s life in such a profound way,” said Tanya.
The lack of education about dysautonomia in the medical community is still enormous, and The Dysautonomia Project is moving mountains to change this. Tava Wilson
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Thank you to our sponsors and community members whose generosity continues to make the Pi Day 5K a success. Together, we are bringing hope and saving lives!
TDP BOARD MEMBER PRESENTS AT NATIONAL NURSING CONFERENCE Ever wonder what a keynote conference of 500 nurse practitioners looks like? The Dysautonomia Project does not have to wonder anymore! With help from Kelly Freeman and Cheryl Faber, TDP Board Member June Bryant presented at the 43rd National Association of Pediatric Nurse Practitioner (NAPNAP) conference in a COVID-19 general session. June’s topic of COVID-19 and dysautonomia was delivered March 23rd in Dallas, Texas to pediatric nurse practitioners from around the country. As a Doctor of Nursing Practice and University of Tampa Assistant Professor, June engaged the audience with information needed to recognize Post- COVID autonomic dysfunction with recent research on its affects on children around the globe. She encouraged The Dysautonomia Project book as an important tool in their practices. The virtual conference made TDP’s session available to an even broader audience of nurse practitioners on April 26th.
Cheryl and Kelly hosted TDP’s booth in a prime location – next to the official NAPNAP booth – attracting many nurse practitioners who shared their elation for TDP ‘s presence as they have patients/ friends/family with an autonomic disorder. Approximately 500 books were distributed. Building on this success, we anticipate the 44th NAPNAP Conference in Orlando, Florida in March 2023 where TDP plans to have a larger presence. The Florida Gulf Coast Chapter of NAPNAP, led by our very own June Bryant, will host.
FREE BOOK FOR YOUR HEALTHCARE PROFESSIONAL PROMOTION! Supporters made this year’s TDP Pi Day 5K a huge celebration of hope and education.
Would you like TDP to send your healthcare professionals a free copy of our book? From 6/15/2022 – 7/15/2022, we’ll be glad to do so and send a note stating the book was sent on your behalf. For complete instructions visit us at www.TheDysautonomiaProject.org/book-promo