BUILDING THE CURE FOUNDATION

Raising awareness to build a cure for Complex Congenital Heart Disease (CHD)

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Our foundation will donate proceeds to research which will someday cure complex heart defects in children.

About

Our Mission


Building the Cure Foundation was created to raise awareness about Congenital Heart Disease (CHD). Our foundation will donate all proceeds to research which will someday cure complex heart defects in children.One out of every 100 children born worldwide have some form of CHD. Most of those children will have a successful palliation and will live healthy and normal lives. However, 25% of those born with CHD are born with a Complex CHD. For the small percentage of children with diagnoses such as Hypoplastic Left Heart Syndrome (HLHS), Double Outlet Right Ventricle, Tricuspid Atresia, Tetralogy of Fallot, Coarctation of the Aorta, Transposition of the Great Arteries, Pulmonary Atresia, and Truncus Arteriosus, a surgical intervention is required very soon after birth.Infants born with Complex CHD's require at least one and sometimes several open heart surgeries and/or heart transplantation to survive. Despite advances in medicine and the life saving surgeries that now allow these children a chance at life, 50% of children born with Complex CHD won't live to see their fifth birthday.In the United States, CHD is 60 times more prevalent than childhood cancer. Twice as many children die from CHD each year than from all forms of childhood cancer combined, yet funding for pediatric cancer research is five times higher than funding for CHD. In fact, of every dollar the government spends on medical funding, only a fraction of a penny is directed to CHD research.Even with this small contribution, CHD deaths have declined over the last decade due to advances made through research. There is currently no cure for any of the 40 different types of CHD, but imagine the possibilities if more funding went to this research. Building the Cure Foundation wants to raise the bar and create a larger awareness around CHD, increase funding for this life saving research and emphasize the importance of finding a CURE!

The Research


There are several groups who are attempting to use stem cells to build completely new hearts! Researchers are on the edge of cracking the code to regenerating the human body. And we find ourselves in the unique position of being able to DIRECTLY fund their research through this foundation.Our introduction to the research of Dr. Doris Taylor was the inspiration behind the creation of this foundation. Her incredibly talented team have worked tirelessly for many years and are currently engaged in research that will change the face of this earth and will save millions of lives! Dr. Doris Taylor

Dr. Doris Taylor

Driven by her vision of what is possible for the future, Dr. Doris Taylor has discovered a way to build a human heart using a patient’s own stem cells. She has devised a complex process of decellularizing, or removing all the living cells, from the “matrix” or “scaffold” of the heart and then re-injecting a person's own stem cells back into the heart. The result is a personalized heart for the recipient! The decellularized heart, or Ghost Heart, is the result of many trials and is the answer to the question of, how do we grow a new heart with stem cells?

Heart Cells

Therefore, for the purposes of this research, the team uses pig hearts to create living beating hearts that will some day be ready for transplant. The fact that these hearts are built using a patient's own stem cells is the key to the lasting effect of such technology. Heart transplants already exist, however, the quality of life after a heart transplant is highly compromised due the necessity for immuno-suppressant drugs to prevent organ rejection. When a heart is built with the patient's own cells the problem of rejection is eliminated.Thus, the transplant recipient can lead a healthy and normal life without the complication of a compromised immune system. Also, a current transplant may have a lifespan of around 10 years because of the constant attack of the immune system on the organ; the stem cell heart has the potential to last many decades just as the person's original heart would.The genius of this technology is that it can be performed on any part of the body that receives a blood supply. For example, this technique can be used to create new livers, lungs, kidneys, intestinal tracts, bones, muscles, literally almost anything in the body. The brilliant minds behind this research will change the landscape of the future and change the lives of millions. This will eventually eliminate the organ transplant list.Currently, thousands of people die every year waiting for an organ transplant, this technology has the potential to save those lives. This will change the way we all think of growing old, ultimately, solving the problem of decay, being able to build human organs, will someday be possible because of this incredible research. It is our intention, as the Building The Cure Foundation, to donate all proceeds to this research and further the development they have already begun.

The Inspiration


My daughter, Katerina, was born July 30, 2018 and we thought she was born a completely healthy baby. At two days old it was discovered that she had not just a minor heart problem, but was missing half her heart. Doctors explained that she never developed the left side of her heart in utero and that she would need to have surgery immediately. After spending a week in the NICU regaining her strength (she was near death when they discovered her condition) she had surgery at 8 days old. She would continue on to have two additional open heart surgeries in her first year of life and spend more than 6 months in the PICU. During this time of total and complete uncertainty, sadness and despair I happened upon the research of Dr. Doris Taylor, who was formerly running a team in the regenerative medicine department of the Texas Heart Institute. For the first time in months, I felt there would be hope for Katerina, a child born with HLHS, a type of CHD for which there is no cure. The brilliant Dr. Taylor, I discovered, was building human hearts using stem cells. Meaning that not only could a heart be custom built for my child, using her own stem cells, but this heart would not be rejected by her body. In traditional heart transplants a patient has to be on immune-suppressant drugs for the rest of their life to prevent the body from attacking the new heart. With a Bio-Identical heart that would no longer be the case. In fact, a person with a heart built using their own stem cells may have a complete new lease on life without the extreme side effects of anti-rejection medication. I had the great pleasure of visiting Dr. Taylor in early 2020 and was amazed by the potential of what is possible because of her revolutionary research. I was honoured to meet such a visionary person who has dedicated much of her life to finding a cure for people needing organ transplants. Dr. Taylor has left Texas to pursue making hearts a reality. She is now working with engineers, process development teams and regulatory consultants to move building hearts into a true manufacturing endeavour. Putting us all one step closer to a CURE! See the link below to hear Dr. Taylor on CNN Life Itself:

Upcoming events

The CURE Gala ™

The CURE Gala ™

The Denver Museum of Nature and Science

October 28, 2023 @ 6:00pm

$175/plate; $1,500/table

Learn more

Heroes

Katerina, HLHS


Katerina, HLHS

Katerina was born with a condition called Hypoplastic Left Heart Syndrome (HLHS), the most severe heart defect a person can have. The left side of her heart never developed in utero and she was born with only half a functioning heart. She has undergone over 6 surgeries, 4 of them open heart surgeries! She is a hero in every sense of the word. They say a honeybee shouldn't be able to fly because it's body size and wing dimensions are aerodynamically incapable of flight - Katerina, too, has soared to incredible heights despite having only half a heart.

Katerina, HLHS

She says she wants to "fix" hearts when she grows up and pretends to be a doctor every day - we can't wait to watch her change the world. She inspires everyone around her with her bravery, strength, indomitable spirit and very special heart.

Andrew, TOF


Andrew, TOF

Andrew was diagnosed 24 hours after birth with Tetralogy of Fallot (TOF), a four part complex congenital heart defect. Andrew would need multiple surgical procedures to correct various holes and a stenos pulmonary valve and at 6 months old, Andrew underwent open heart surgery. Andrew's condition typically requires a new pulmonary valve every 3-5 years, however 16 years later, Andrew still has his first valve! This young man leads a very healthy, restriction free lifestyle and is blessed to have avoided further surgeries up to this point. Andrew knows that his heart is a muscle and he exercises that muscle every day. While he will eventually need a new valve, Andrew keeps his heart strong by competing in high school athletics, Olympic weight lifting and Basketball.

Andrew, TOF

Andrew's story is one that defies all odds, a story of complex CHD that pushes a young man to be the healthiest version of himself, but does not define him.

Allanah, AVCD


Allanah, AVCD

Allanah was born a seemingly healthy baby girl weighing 7lbs 8oz. After going home, her mom noticed that her lips and fingernails looked a little blue and she seemed to be working very hard during feedings. At the 2 week check-up her mom reported what she had noticed and the paediatrician noticed that she had not gained weight, but had actually lost weight during her first 2 weeks of life. The paediatrician recommended she see a cardiologist and it was during this visit that Allanah was diagnosed with Atrioventricular Canal Defect.

Allanah, AVCD

At four months old Allanah had open heart surgery, after 9 hours the surgeon came out and said everything looked great. Allanah is now 23 years old. She is pursuing her dreams and living a healthy life.

Team

Desiree Vrionedes Freris


Desiree Vrionedes Freris
Founder, President of the Board of Directors

Desiree is the founder and president of Building the Cure Foundation, which she formed to raise awareness about complex heart disease in children as well as fund research toward finding a cure. In 2018 Desiree’s daughter was born with a rare heart condition called Hypoplastic Left Heart Syndrome (HLHS), meaning she was born with just half a heart. She has had 4 open heart surgeries to redirect her blood flow, a temporary solution to a much bigger problem. Upon meeting Dr. Doris Taylor and learning about her life saving research, Desiree was inspired to create this foundation to be able to directly contribute to the cure she knew would one day provide her daughter the opportunity for a full and long life. Prior to 2018, Desiree worked in business and professional services, starting her career on Wall Street as a fixed income trader for two German banks. Following a move to Colorado, she went into a sales and professional development role for a Fortune 500 company. Desiree is thrilled to be focusing her attention now on the altruistic goal of raising funds and awareness toward curing heart disease, the number one killer in the world and a disease that affects so many innocent children.

Theresa Kraser


Theresa Kraser
Secretary and Treasurer of the Board of Directors

Terry is a Board Member and the current Secretary/Treasurer of Building the Cure Foundation. She is passionate about the mission of the Foundation to fund regenerative medical research and to assist families in need of organ transplants. Terry’s story is personal, as her beautiful 4-year-old granddaughter, born with HLHS and having just half a heart, has undergone multiple open heart surgeries in order to temporarily allow her to lead a normal life. She will need a new heart in the years to come and Terry believes that the “cure” will come through the miraculous work being performed by Dr. Doris Taylor in building hearts and other organs using the recipients’ own DNA. Terry aspires to the bravery and determination she has seen in her granddaughter and is excited to be a part of the BTC team. Terry ‘s background is in Finance and Investments, where she has worked for over 35 years as an institutional investment advisor for municipal clients across the country. Terry’s heart lies with children and families whose lives are affected by complex CHD.