Board of Directors
Our organization is governed by a Board of Directors elected by our membership. Our Board of Directors uses policy governance to envision the future and to ensure operations are aligned with our mission statement and meet the evolving needs of our constituency. Our board currently meets once a month. For more information please contact us at info@TheDysautonomiaProject.org.
Karen Crown, President
Karen Crown is Kelly Freeman’s mother. Watching her daughter suffer by being undiagnosed, 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.
Nate Freeman, Treasurer
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.
Kelly Freeman, Founding Director
Kelly Freeman, the Founding Director of The Dysautonomia Project and co-author of The Dysautonomia Project Book, holds an objective in line with TDP’s. Kelly, a dysautonomia patient herself, aims to transform the care of patients with dysautonomia through the education of physicians, patients, and community leaders with the mission of speeding time to diagnosis, proper assessment, and treatment of patients in community based clinics and hospital settings around the world.
After realizing that medical professionals in her own community were lacking knowledge about dysautonomia, Kelly set out to create awareness and education on the community level. This is when The Dysautonomia Project was born. What started as a small vision in May of 2014, has now grown into a large mission to educate our community-based medical professionals and reduce diagnosis time from 6 years to just 15 minutes. Through the distribution of The Dysautonomia Project Book and participation in various community educational events, Kelly Freeman is changing how doctors approach autonomic disorders each and every day.
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.
Beth Pike became involved with The Dysautonomia Project when her daughter, at age 25, became acutely ill. Her daughter spent greater 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 Dysautonomia patients, and their families, so they won't have to go through the despair and isolation that her family has.
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.
Kirk has known the Freeman family for several years, both personally and professionally. They have spent many years enjoying life together, yet, Kirk has seen how Kelly’s quality of life has been crushed by suffering from Dysautonomia. Kirk was visiting a friend at the hospital the very day that Kelly was admitted with “unusual symptoms”. Kirk saw firsthand what a lack of knowledge can do for the patient and the patient’s family.
Kirk wants to help raise the awareness of Dysautonomia by educating the medical community, patients, and their families so others, like Kelly, would not have to suffer through misdiagnosis, outrageous medical bills, and the exhaustion that comes from feeling like there is no hope. Kelly is Kirk’s hero and he says Nate is the finest man he has ever known.
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 do 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.
It is no accident that Tony now calls himself a Board Member for The Dysautonomia Project. In the Fall of 2014, Tony thought he was simply supporting a friend’s inaugural fundraising efforts for a grassroots organization. Tony had been asked to attend the gala as a guest of Nate Freeman.
It was during the program that Tony realized that what his own daughter had been experiencing were symptoms associated with Dysautonomia. His daughter had been searching for answers for 4 years. Because of Tony’s job and vast experience in the health field, he had her in front of anyone he thought could help, to no avail. After the event, Nate and Kelly provided Tony with the people who could correctly diagnose his beautiful girl. Tony was now charged with the responsibility to get these answers to other searching parents and patients.
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 served on the race committee for the POTS Pi Day 5K in 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.
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.
Lisa is a vehement patient advocate linking countless patients and families to life-changing information every day. Eleven years ago, she navigated the lonely road to diagnosis for her own ailing daughter when dysautonomia was completely unheard of in Florida. Today, she shares her vast knowledge of specialists, treatments and protocol saving desperate families years of searching. Lisa began with TDP as a valued volunteer and became a board member in 2016. She is also a member of the 100 Women Who Care.
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 incoming treasurer for The Dysautonomia Project, and is very excited to continue the mission of TDP!
B.J.’s love and admiration for the Freeman family initially sparked her interest in The Dysautonomia Project. Because of her own impaired immune system, she has always been extremely interested in healing and medical research. B.J. holds many successes and is a licensed psychologist, a licensed chaplain, an ordained minister, and has been a teacher and guidance counselor! Prior to 1990, B.J. has served on several boards, and has also served as a president, each for a yearly rotation, on 3 of them! B.J. is excited to continue TDP's mission to educate medical professionals and the community about dysautonomia.
Cheryl Faber, Liason to the Board
Cheryl became involved with The Dysautonomia Project in 2015 while a part-time employee at Network People, Nate and Kelly's Information Technology company. As Kelly's health continued to decline and The Dysautonomia Project continued to gain momentum, the board realized the nonprofit needed administrative support to manage the growing organization. To this day, Cheryl continues to work for Network People and also provides administrative and bookkeeping oversite for TDP. Over the years, she has gained an awareness of how life-altering dysautonomia symptoms can be, how much patients struggle and feel helpless, and why education is so critical. Cheryl is deeply passionate about helping fulfill TDP's mission to educate physicians, patients and the community about dysautonomia, and is personally involved in taking this education into local school districts. She has witnessed first-hand the impact that dysautonomia has had on her precious friend Kelly, and on many other patients she has been blessed to meet. As a result, Cheryl is deeply committed to TDP and helping the organization do whatever it takes to provide hope to those who suffer from autonomic nervous system disorders.