TDP Patient Survey

We invite you to participate in the 2020 Dysautonomia Project Patient Survey. The information gathered will help us spread hope to others through updated and improved research and education.

By completing this survey you agree to share your personal medical information with The Dysautonomia Project.

A handful of responses will be summarized and featured in an a 2020 educational blog post of patient stories. All information will be kept anonymous.

Thank you for your participation and support

Difficulty standing for long periods of time
Nausea
Palpitations
Fainting
Difficulty maintaining body temperature
Abdominal pain
Diarrhea or constipation
Flushing (Face or other turns red/warm to touch)
Shortness of breath or difficulty breathing
Anxiety or depression
Weight gain/loss
Fatigue
Brain fog or mental clouding
Exercise intolerance
Abnormal sweat
Migraine headaches
Intermittent gastroparesis
Circulation issues
Difficulty urinating
Difficulty sleeping
Panic attacks
Lightheadedness
Parasthesias (Tingling, numbness)
Heat intolerance
Abnormal tears
Vomiting
Reflux
Chest discomfort
Difficulties with lights, sounds, touch or motion
Tinnitus (Ringing in the ears)
Other
Education (Efforts to educate myself and/or others about dysautonomia)
Exercise
Fluids (Increase of oral fluid intake)
Salt
Counter maneuvers
Diet
Compression garments
Healthy sleep habits
Dietary supplements
Acupuncture
Other
Fludrocortisone (Brand name: Florinef)
Midodrine (Brand name: Promatine)
Beta-Blockers (Brand names: Propranolol, Metoprolol, etc.)
Pyridostigmine (Brand name: Mestinon)
IV Saline
Clonidine or Methyldopa (Brand name: Catapres or Aldomet)
Amphetamine or Methylphenidate (Brand name: Adderall, Ritalin or Concerta)
Ibuprofen (Brand name: Motrin, Advil, etc.)
Clonazepam (Brand name: Klonopin)
Alprazolam (Brand name: Xanax)
Droxidopa aka L-DOPS (Brand name: Northera)
Tricyclic Antidepressants (Brand name: Doxepin)
Selective Serotonin Reuptake Inhibitor (SSRIs)
Erythropoietin (Brand name: Procrit)
Yohimbine
Ivabradine (Brand name: Corlanor)
Somatostatin (Brand name: Octreotide)
Desmopressin (Brand name: DDAVP)
Bethanechol (Brand name: Urecholine)
H1 and/or H2 Antihistamines (Brand names: Zyrtec Zanntac, Claritin, etc.)
Other
Improved a lot
Improved some
Not changed
Worsened some
Worsened a lot

NEW! Check out our new patient survey. You'll be helping others.

Al Ruechel

Al Ruechel, a graduate of Iowa State University, is a retired Television News Anchor from Bay News 9 serving the greater Tampa Bay area. He has been reporting and anchoring for more than 50 years, 34 of those years in the Tampa Bay area, interviewing literally thousands of newsmakers, politicians, subject matter experts, and even 6 presidents, and numerous presidential candidates

He has won dozens of anchoring and reporting awards working in Ames, Iowa, St. Louis, Missouri, Fort Myers, Florida, Albany, New York, and Tampa. He’s been awarded the Florida Medical Communicators Award two years in a row as well as 4 Emmy Awards for investigative and live on-air anchoring. He also volunteers at many of the Bay Area social service agencies as well as being on the Worship Team at his local church. He also hosts a bi-weekly interview segment on WPDS with Pinellas County School officials.

Al became involved with TDP through his friendship with Kelly and Nate Freeman. His background in short and long form interviewing made him a natural choice for leading the video discussions on our website.

He’s been married to the love of his life, Jennifer, since 1976. They have four children and 12 grandchildren, so far.

Tanya Baird Repka

Tanya Baird Repka has been active for many years in various community organizations and non-profit groups with a focus on fitness and youth advocacy. Tanya was director and head coach for 9 years of Tampa Bay Fit marathon training program and coached middle school track & field. She Co-Founded the St. Petersburg Road Runners Club in 2006, served as advisor on youth programs for Motion Sports Management, and has experience organizing and directing community, athletic and fundraising events. She is past President of the Osceola High School Athletic Boosters, where she oversaw the Christina Tournant Memorial Scholarship. Tanya has served on the race committee for the POTS Pi Day 5K as a committee member and Chair since 2017. She is the mother of three daughters, one of whom has POTS. She became involved in dysautonomia awareness efforts as a result of her struggle to find a diagnosis and treatment for her daughter. Tanya is a lifelong resident of St. Petersburg and an associate broker and sales consultant at Baird Realty Group, a family-owned full service real estate firm. Tanya studied Marketing and Business Administration at the University of Florida.

Susan Jinks

Susie watched a good friend and her family struggle to find a diagnosis for her illness. The more she learned about Dysautonomia, the more people she realized were struggling with some form of it, and did not know where to turn. Susie would like to do her part in raising awareness and continuing to find answers for coping and triumphing over dysautonomia someday.

Jason Jensen

Jason Jensen, AIA, LEED AP, joined Wannemacher Jensen Architectural Firm in 2002. After gaining experience in New York City, he returned to St. Petersburg with a goal to innovate architecture for this generation in the Tampa Bay area.

Terence M. Igo

Terry Igo joined The Sanibel Captiva Trust Company at its inception in 2001 on Sanibel Island. He was instrumental in growing the initial client asset base, (now more than $2 billion), followed by a successful expansion into Naples and then to the Tampa Bay region in 2010. Since assuming the CEO position in 2013, Terry has grown the Florida footprint to also include Belleair/Clearwater and Tarpon Springs. In addition to directing company-wide operations, Terry serves as a member of the Asset Management Committee, the Risk Management Committee, Strategic Planning, and the Board of Directors.

He has served as advisor to many Florida non-profit organizations, assisting with capital and planned giving campaigns; increasing awareness of philanthropic giving. Terry currently serves on the Straz Center for the Performing Arts Board of Trustees and is a member of the CEO Council of Tampa Bay. He is also past chairman and founder of the Go Red for Men of Tampa Bay – American Heart Association, and a past trustee of Hodges University. He and his family resided on Sanibel-Captiva Islands and Fort Myers for 20 years before relocating to Tampa Bay in 2013.

Molly duPont Schaffer

Molly’s lifelong friendship with TDP founder Kelly Freeman brought her to our Board. Molly is on staff at both Church of the Ascension and duPont REGISTRY TAMPA BAY. Her love for those she has grown up with in our community creates a large network of supporters. Molly’s passions include anything fun with her husband and children, needlepoint, and travel. Molly is on the Board of Saint Paul’s School, and is involved with the Arc Tampa Bay Foundation, Morton Plant Mease Healthcare Foundation, and Clearwater Marine Aquarium.

Bob Cottrell

Bob has owned and operated his own manufacturing business in Largo since 1974. For 20 years, he built fiberglass shells for Island Packet, Com-Pac, Spindrift, Nimble Boats and others. In 1994, Bob began making putties for the marine market. This business was sold in 2016 and he is currently retired.

Bob and his wife have been supporters of The Dysautonomia Project since its inception. They have known Kelly Freeman for over 40 years, and Nate for well over 20. Bob was honored when Nate reached out for information and advice when he was considering going into business for himself - in what was to become the very successful Network People. Bob is the past treasurer for The Dysautonomia Project, and is very excited to continue the mission of TDP!

June Bryant, DNP, APRN, CPNP-PC

June Bryant was introduced to The Dysautonomia Project in after hearing the education team speak to the Hillsborough County School District school nurses. She is a dedicated pediatric nurse practitioner in the community and nursing professor at University of Tampa.

Hunt Brand

Hunt met the Freeman family many years ago at Church where he was part of the praise team with Kelly. Over the years he also worked with Nate on various technical projects. Hunt served his local community as Commissioner and Mayor of The City of Belleair Bluffs where he repaired relationships, improved partnerships and was known as the voice of reason. With over twenty years of experience as a senior technology leader he was honored to join the TDP team to help with online messaging and support systems to support our mission to educate healthcare professionals, patients and communities about dysautonomia.

Karen Crown

Past President

Karen Crown is Kelly Freeman’s mother. Watching her daughter suffer by being un-diagnosed, only to follow with a misdiagnosis was extremely difficult as a parent. When the initial doctor told Kelly that she was just anxious and panicky, to go home, take Xanax and see a counselor, Karen knew that she had to get involved. Karen knew there was something terribly medically wrong with her daughter.

Kelly’s quest for answers led the Crown - Freeman family to establish The Dysautonomia Project, a not for profit 501(c)(3) organization.

Beth Pike

Secretary

Beth Pike became involved with The Dysautonomia Project when her daughter, at age 25, became acutely ill. Her daughter spent more than 60 days in hospitals trying to figure out what was wrong with her, and why she was so desperately ailing. Beth met Kelly Freeman at a National Convention and found out that she lived nearby. Beth wants to help raise awareness and educate the medical field, along with our community, about Dysautonomia so medical providers will quickly be able to recognize the heterogenous symptoms of this disorder. Beth is involved in TDP in order to help create hope for dysautonomia patients, and their families, so they won't have to go through the despair and isolation that her family has.

Nate Freeman

Interim Treasurer, Past-President

Nate Freeman is a co-founder of both The Dysautonomia Project and his company Network People. He holds a bachelor of science from Willamette University, and enjoys learning about new organizations and their success stories. Nate holds a strong desire for educating the medical community about dysautonomia because his wife, Kelly Freeman, is a dysautonomia patient. After watching his wife, and his family struggle for so long to find an answer, Nate knew he had to create something to raise awareness and education in his own community. With the help of his wife, The Dysautonomia Project was born.

Nate enjoys teaching, whether it is leading a class on how to do better IT or teaching children at Sunday school. Because of his love for teaching, The Dysautonomia Project is the perfect avenue for Nate to provide his vision and leadership to medical professionals on the community level.

Alexandra Key

Vice President

Alexandra is a founding board member of TDP. She witnessed first hand the dismantling of TDP founder Kelly Freeman’s life as her dysautonomia diagnosis unfolded. Through this gained understanding, she has helped several friends navigate to a diagnosis with TDP resources. Alexandra is pleased to contribute to this worthy cause by using her past experience in non-profit work and is greatly encouraged by the strides made since TDP’s inception.

Carlton Ward

President

Mr. Ward received a B.S.A. in 1970 and a J.D. in 1973 from the University of Florida. A native of Tampa, Florida, Mr. Ward has been involved in many professional and community activities since moving to Clearwater, having served on organizations, including the Clearwater Bar Association, the American Bar Association Real Property, Probate and Trust Law Division, American Bar and Florida Bar Young Lawyers Divisions. Mr. Ward is a former President of the Pinellas Real Estate Law Council and Past Chairman of the Greater Clearwater Chamber of Commerce, the Pinellas County United Way and the United Way of Tampa Bay. Mr. Ward has lectured frequently regarding real property and condominium law. His practice includes real estate, corporate, condominium, commercial, banking, wills and trusts and general law.