The Big Heart Foundation
Lyric Maro
Born out of tragedy and fueled to find answers, effect change and prevent unnecessary deaths due to heart disease, The Heart Foundation has transformed the devastating death of Steven S. Cohen into a passionate and positive movement which does justice to the memory of the wonderful man who inspired its creation.
We are a non-profit organization focusing on the prevention of heart disease. For over 30 years Iowa Heart Center Foundation has contributed to clinical and community outreach by providing access to emerging information on cardiac health, supporting the training of healthcare professionals through continuing professional education and student scholarships, providing access to automated external defibrillators (AED), and facilitating community outreach on living a heart healthy life through prevention and education.
The mission of the Family Heart Foundation is to save generations of families from heart disease through timely identification and improved care of familial hypercholesterolemia and elevated lipoprotein(a). Through research, advocacy, and education we play a critical role in driving change and empowering families to navigate their own health.
Right now, all over the world, 1 in 250 adults and children have familial hypercholesterolemia (FH) and 1 in 5 have elevated Lipoprotein(a), also known as Lp(a). Those who are diagnosed with either FH or high Lp(a) need help and hope, but far too many have no idea of these genetic risks.
The Family Heart Foundation is pioneering research, advocacy, and education to help prevent heart attacks and strokes caused by elevated lipoprotein(a) and familial hypercholesterolemia, two inherited disorders that have an impact across generations.
We are committed to looking through a collective lens to serve our community equitably by centering your voice. Our Take Heart Collective Impact empowers individuals and their families to shift the focus from reactive problem-solving to co-creating the future of pediatric heart care in partnership with healthcare providers and systems, government and advocacy organizations, the mental health therapy community, and educational leaders.
Heart Warriors are individuals affected by childhood onset heart disease that dare to drop the armor that protects them from feeling vulnerable, embracing their heart condition to bring purpose, and meaning to their lives.
Riley was born with tetralogy of Fallot with pulmonary stenosis and complete heart block. He underwent his first open heart surgery at just two months old to repair his heart and a few weeks later had a cardiac pacemaker placed. Since then he has had his pacemaker replaced twice, once after coding in the hospital, and will need additional replacements as he grows.
Evie was born at twenty weeks with hypoplastic right heart syndrome. Her surgeons had planned a series of three surgeries to repair her heart, but unfortunately at birth they discovered her coronaries were missing or abnormal. At one week old, Evie was listed for a heart transplant. While waiting for her hero heart, she was placed on ECMO. At eight weeks old she was blessed with a second chance at life and received a heart transplant!
Emmalyn is a year and a half old and was born with Transposition of the Great Arteries (TGA). She had her first surgery at four days old and then again at nine days old. She has since had two angioplasties.
Calvin was diagnosed with a congenital heart defect at fifteen months after the pediatrician noticed a heart murmur, along with other chronic respiratory issues. Calvin has undergone two open heart surgeies in order to re-establish correct blood flow and repair his CHD.
Allyson is a preschooler and is so excited to go to kindergarten next year! She has three older siblings who mean the world to her. Allyson is extremely adventurous and her favorite thing to do is go to Target.
Diego is an active teen who loves flag football, video games, dad jokes, and walking his dog. His laugh is infectious and always brings an energy and joy that lights up any room. He is the oldest of two brothers, and despite the typical sibling rivalry, he enjoys hanging out with his younger brother and playing video games.
Diya was born in 2007 with double outlet right ventricle with hypoplastic left ventricle and has a twin brother. She underwent three open heart surgeries early in life. She lives a healthy life with the support of her cardiac team.
Tommy was, without fail, the funniest and kindest person in the room. Whether it be a party, a classroom, or a family gathering, Tommy was the light shining on others to bring them Joy. Tommy was a Freshman at Mound Westonka High School where he enjoyed being part of the boys volleyball team. Tommy's supreme uniqueness was evident in everything he did from aspiration to be an Olympic Speed Walker to his enthusiasm for finding the perfect outfit at Goodwill. He loved Harry Styles and Christmas Trees. He adored his friends, family, and especially his dog Finnegan. Soon after his death, a #BeLikeTommy movement began to encourage people to be kind, accepting, and to bring joy to each other, like Tommy did every day of his life.
Teddy, a 2018 East Ridge High School graduate was born with a congenital heart defect, bicuspid aortic valve. At the age of 16, he had a successful surgery to replace his aortic valve and as a result, he was cleared to play basketball. On May 4th, 2022 Teddy collapsed suffering sudden cardiac arrest while playing a pickup game of basketball with his brother and friends. CPR was administered but there was no immediate access to an AED. It has become the family's mission to push for widespread access and availability of AED's.
Teddy's legacy will live on through the Teddy's Heart Foundation, which raises funds to place AED's in public athletic parks and places.
Patrick was a fun-loving teenager who is loved and respected by all. He brought laughter and life to all who knew him. Patrick and his Eastview teammates were playing in the Blue OX Hockey Bantam AA Tournament in Brainerd, MN. Patrick scored the game's 1'st goal and collapsed moments later on the ice. First Responders were unable to revive him. His heart condition was never detected during routine physicals. It was later determined that he had numerous heart defects that caused his early death.
16-year-old Kyli Penner was discovered to have a condition would affect her lungs and could have lead to a full heart transplant. Thankfully, the problem was found before any of those things could have happened. She underwent successfully surgery to repair the problem shortly after it was discovered. Kyli was soon back on her feet dancing with the Rosemount High School Dance Team.
16 year-old Kaylyn Rosewell is a competitive dancer who has been dancing since age 7. She collapsed during a costume change near the end of a studio recital. An EMT, nurses, and doctors who were in attendance at the performance administered CPR and used an AED twice while an ambulance was in route. Kaylyn had a PFO and displaced artery corrected with open chest surgery and an ICD was placed in her chest to protect her from any future arrests, pending confirmation of an ARVC diagnosis.
Joey was supposed to get up for morning captains practice for soccer. The emergency doctors and responders were unable to revive him. He was active in Lakeville North High School soccer, REV boys soccer team, Marching Band, Jazz Band, Math League team, and Boy Scouts. Joey's heart condition was never detected by a physician during routine physicals.
Joe was a healthy, active 24 year old who had just recently "lived his dream" of becoming a police officer in his hometown city of St. Paul, Minnesota. He had completed several distance running events, including severall marathons, as well as passed through the physically tasking police academy. Joe had a significant family history of heart complications, including a father who passed away at the age of 33 from a cardiac arrhythmia leading to sudden cardiac arrest. Joe never had a chance to meet his father.
Jack Pogatchnik collapsed while running during a workout at the Waconia Community Center. Heroic efforts by a friend, early responders and doctors kept him alive for the next 3 days. Jack was taken off life support when it was determined he could not survive. He was a senior at Woconia High School. He was an AP Scholar and was also taking college classes while attending high school. He payed soccer, ran cross-country and was on the trap shooting team.
Curtis, a 2018 graduate of Prior Lake High School, was a talented wrestler and went to Northern State University in Aberdeen, SD on a wrestling scholarship. Curtis had a passion for life and a smile that could light up any room. He was an avid hunter and fisherman and was passionate about his family and friends.
Eight weeks after he moved to NSU to begin his college career, Curtis went to wrestling practice and back to his dorm for homework and dinner. He passed in his sleep from an arrhythmia due to idiopathic left ventricular hypertrophy. HIs heart was twice the size it should have been.
Active in hockey and baseball, 14-year-old Colin Tollefson was discovered to have WPW syndrome, an extra electrical pathway between his heart's upper and lower chambers that can cause a rapid heartbeat. Thankfully, it was identified by P4P volunteers and ablated by Colin's cardiologist, successfully eliminating the risk of sudden cardiac death (SCD).
Colin has resumed his activities, playing both baseball & hockey. Colin & Patrick were friends, classmates and teammates and Colin was at the game when Patrick collapsed. This wonderful story is about how Colin's life was saved by the organization that exists because of Patrick.
Beth was proud to be in the Moundsview High School theater as well as the Youth in Government program through the YMCA. AS a result of her passion for molding the lives of children and adolescents, Beth became a Girl Scouts Counselor. Her sweet smile, unconditional love for everyone, as well as her contagious sense of humor, will be remembered by all the lives she touched.
c80f0f1006