The Pioneers Advocating Together for Congenital Hearts (PATCH) Network is helping to bring the patients and family back into the care continuum. We want our patients to be empowered by all the information available to them not slowed down by it. We work with patients to help maximize the valuable time they spend with their providers.
All of our patient services are provided free of charge and our ability to help as many patients as possible is dependent upon the valued support of our generous donors. For this reason your support and assistance in fundraising and spreading our message is critical to our ability to serve the congenital heart community.
A patient advocate is a professional who provides services to patients and those supporting them who are navigating the complex healthcare continuum. Advocates work directly with clients (or with their legal representatives) to ensure they have a voice in their care and information to promote informed decision making. Advocates may work independently or in medical or other organizational settings. They serve individuals, communities, disease‐specific populations, and family caregivers. Synonyms may include health advocate, healthcare advocate, healthcare advocacy consultant, healthcare consumer advocate, and other phrases that imply this role.
Joe was born with a congenital heart defect called Tetralogy of Fallot and Wolff-Parkinson-White syndrome. He required his first open heart surgery at 54 hours old and suffered a stroke after surgery. He has had four open heart surgeries, the last two days before his 30th birthday. He has struggled with PTSD for most of his life and believes a strong mind and building a team with a roster full of supporters is the key to successfully living with a chronic illness. He is a Board-Certified Patient Advocate for families, children, and adults with congenital heart disease—helping them to navigate the emotions, diagnoses, and challenges they face in finding and understanding appropriate CHD care. He specializes in understanding the unique medical challenges that are faced by patients with CHD and chronic illness and strives to be a valuable resource that can benefit patients and families in need of assistance.
Lindsay’s CHD wasn’t discovered until her mom took her into a six week baby well check up. It was there that the pediatrician heard Lindsay’s heart murmur for the first time. They advised her parents to rush her to San Diego Children’s Hospital for further evaluation. From there, she was diagnosed with: tricuspid atresia, single ventricle, leaky mitral valve and transposition of the greater arteries. Lindsay had her first of three open heart surgeries two weeks after her initial diagnosis. Throughout her 30 years of life, Lindsay has never let CHD define her. She has moved all over the United States, completed her Master of Arts in Educational Counseling and married her husband the summer of 2016. Lindsay joined our team because she has a passion for patient advocacy and using her own life experiences to help CHD patients and their families get the right care.
Not only so, but we also glory in our sufferings, because we know that suffering produces perseverance; perseverance, character; and character, hope.
Tiffany was born with three congenital heart defects (CHD): Coarctation of the Aorta (CoA), bicuspid aortic valve (BAV), and aberrant right subclavian artery (ARSA). However, her defects weren’t discovered until she was a competitive athlete in her teenage years, despite having a loud heart murmur and cold, painful legs her entire childhood. At age 16, she broke her toe playing soccer and when it wouldn’t heal, her parents took her to her primary care physician for an X-ray whereupon it was discovered she had very high blood pressure and absent pulses in her legs. Thanks to a broken toe, this critical defect was found and Tiffany had immediate heart surgery to widen her aorta, as well as numerous follow-up cardiac catheterizations and cardiac MRI’s in the years since.
Tiffany’s outgoing personality and unique CHD experience has ignited a passion to help others. She continuously strives to serve as a valuable resource to those around her. She has achieved career success in the healthcare industry in emergency medical services, sales, data consulting, and patient advocacy. She earned her Master’s in Healthcare Administration and Management while working fulltime for a large health insurance company, and also serves on the Board of Directors for two national healthcare trade organizations. She enjoys sharing her knowledge of CHD and deep understanding of the healthcare system to guide other CHD families through their times of need.
Tiffany has a twin brother, who is heart-healthy, and she resides in the suburbs of Richmond, VA with her police officer husband, Andrew, and one dog and two cats. In her spare time she enjoys boating on the Chesapeake Bay, reading, watching soccer, exercising, and snuggling her fur babies.