We began fundraising for congenital heart defect (CHD) research the moment Graeme was born in 2012. That was when we first learned about congenital heart defects (CHDs). Nine years later, we started our own non-profit in his name, The Graeme McDaniel Foundation.

Our mission is to fund congenital heart defect research and support heart families.

The Graeme McDaniel Foundation is excited to grow and strengthen relationships with heart centers around the country. We are learning of these centers’ planned research projects and hearing how additional support from the foundation can progress their hard work. We will be able to choose which projects the foundation will support with the money you help us raise, and we are excited to share the progress and outcomes of these projects. Please fill out this grant application to be considered for future grant funding from The Graeme McDaniel Foundation. Please note, to ensure The Graeme McDaniel Foundation grant funds are used to their maximum extent for life-saving CHD research, indirect cost recovery is not allowed.

Congenital Heart Defect Grant Awards

$100,000 to University of texas health science center and the children’s heart institute at children’s memorial hermann hospital

Tissue Engineering of Autologous Umbilical Cord Graft for Congenital Heart Defect Reconstruction - Dr. Damien LaPar

This proposal utilizes novel technology developed in the laboratory to address the limitations of currently available graft and patch materials. The team will utilize a portion of a newborn baby’s own umbilical cord that would normally be discarded as medical waste after delivery to manufacture novel graft material to utilize for future surgical reconstruction of that child’s own congenital heart or vascular defect. Use of the child’s own (autologous) umbilical cord graft (UCG) has unique and inherent advantages over autologous pericardium and/or foreign graft material. Additionally, using innovative and patented technology from the laboratory, they have developed techniques and protocols to quickly process and manufacture a newborn umbilical cord into a tissue patch that their lab has already utilized for repair of cleft palate and spinal cord defects. The team aims to extend the application of this technology to investigate its use in CHD reconstructions.

$50,000 to Texas children’s hospital heart center

Continued support of our 2023 Graeme McDaniel Research Scholar - Dr. Tam Doan

Thanks to ongoing support from The Graeme McDaniel Foundation, Graeme McDaniel Research Scholar Dr. Tam Doan at Texas Children’s Hospital will continue to expand his research on mitral annular disjunction, coronary artery anomalies, and fetal cardiology. Using new software called “TomTec AutoStrain” supported with funds from the Foundation, Dr. Doan and his colleagues are involved in several projects to study heart function in different disease processes. Dr. Doan will present research findings at the upcoming European Society of Cardiology Congress 2024 in London. He also continues to be involved with multi-center collaborations as well as collaborations within the Division of Cardiology and other departments at Texas Children’s with a goal to increase the quality of cardiology research.

You can read more about Mitral Annular Disjunction and Its Progression during Childhood in Marfan Syndrome in Dr. Doan’s paper here.

$100,000 to texas children’s hospital heart center

Using Fetal lung MRI and maternal hyperoxygenation to risk stratify in fetal hypoplastic left heart syndrome (HLHS) and total anomalous pulmonary venous return (TAPVC) - Dr. SHaine Morris

This project supports the work of Dr. Shaine Morris and the fetal cardiology team. Fetuses with hypoplastic left heart syndrome (HLHS) and total anomalous pulmonary venous connection (TAPVC) are at risk for developing obstruction to the normal drainage of blood from the lungs. This obstruction impairs normal lung development and markedly worsens the prognosis for the infants. While the overall structure of the fetal lungs can be assessed with routine fetal ultrasound, both fetal lung MRI and maternal hyperoxygenation testing offer valuable insight into the health of the developing fetal lungs. Both tests provide prognostic information on the postnatal course for infants and have been used in evaluation for candidacy of fetal interventions. However, little is known regarding how these tests change after successful fetal intervention, or how those changes impact fetal prognosis.

"We are so incredibly thankful for this gift that will truly allow us to push the field in fetal cardiology to help families affected by congenital heart disease to truly have the best possible outcomes!" Dr. Shaine Morris

$50,000 to UH Rainbow Babies & Children's Hospital, Case Western Reserve University

Novel Zinc Bioresorbable Stent (ZeBRa Stent) for the treatment of vascular stenoses in pediatric patients with congenital heart disease - Dr. Martin Bocks

This project is proudly cofunded by a 3rd party event hosted in Ohio, Golf FORE CHDs.

Bioresorbable stents offer the potential for treatment of vascular stenoses without the concern for growth restriction as both re-stenting of the vessel with larger stents or vessel growth following vascular remodeling can occur once the stent material resorbs. This zinc alloy stent is very close to being the “holy grail” of stents for the treatment of vascular obstruction in patients with CHD. These stents should be strong, stay around to treat the obstruction for an ideal amount of time, and then resorb and disappear. This project will test a third generation of zinc coating. If successful, these stents could be used to treat any CHD that has associated vascular obstruction.

$100,000 to Duke university

Partial Heart Transplantation: Expanding to the Atrioventricular Valves - Dr. Douglas Overbey

Partial heart transplantation represents a promising approach to provide growing heart valve replacements for newborn babies. The team’s previous groundbreaking work has shown partial heart transplants in the semilunar valve position grow with the recipient, providing the first ever clinical solution to the need for growing heart valves. They hypothesize that partial heart transplants can be performed in the atrioventricular (AV) valve position.

"Foundational research support in congenital heart surgery is incredibly important, since it allows us to pursue novel therapies for conditions that are relatively infrequent. These seed funds allow us to investigate new ideas that have enormous potential but not enough perceived impact or preliminary results to be competitive for larger scale funding avenues. Support from foundations tailored toward congenital heart disease is a great way to push forward innovative therapies that could help many future children with congenital heart disease. We are incredibly excited to be a part of these studies and look forward to honoring the foundation." Dr. Douglas Overbey

2024 Update - Dr. Overbey shared this PCICS podcast discussing partial heart transplant and that experiments from the most recent submission are going very well. They have finished the mockup models and are working on live animal experiments - more to come!

https://pcics.org/news-resources/podcast/

Episode 113: Partial Heart Transplantation

• Guests Dr. Douglas Overbey, Dr. Katie Cashen, and Dr. Erin Shea from Duke University discuss partial heart transplantation of pediatric semilunar valves.

• Co-hosts Deanna Todd Tzanetos, MD, MSCI and Misty, Ellis, DNP,APRN, CPNP-AC/PC (Norton Children's Hospital/U of Louisville)

• Editor/Producer: Deanna Todd Tzanetos, MD, MSCI (Norton Children's Hospital/U of Louisville)

$50,000 to University of texas health science center and the children’s heart institute at children’s memorial hermann hospital

Cellular Signaling and Stem Cell Therapy in Congenital Heart Disease - Dr. Damien LaPar

During the first year of support, Dr LaPar's team has successfully developed an in vitro model of endocardial fibroelastosis (EFE). EFE is the scarring in the developing heart that commonly occurs in patients with CHDs. This year, the team will continue their work in an attempt to eventually stop or reverse the formation of EFE through stem cell therapy.

2024 Update

$50,000 to Texas children’s hospital heart center

The Graeme McDaniel Research Scholar (year 2) - Dr. Tam Doan

The Graeme McDaniel Research Scholar will be awarded to one of Texas Children’s Hospital’s faculty over a period of one year to support their work in preparation for future applications for ongoing congenital heart defect research funding. Through this mechanism, the fund will achieve significant financial leverage through its support of bright early-career researchers enhancing their ability to obtain career-defining long-term research funding. The potential to follow these advanced individuals and maintain relations with them as they grow in their career is invaluable. With a 3-year commitment, we look forward to funding three Graeme McDaniel Research Scholars.

We are honored to announce Tam T. Doan, MD, MS, RDCS as our 2nd year Graeme McDaniel Research Scholar!
Dr. Doan’s primary clinical focus lies in fetal cardiology, diagnostic and interventional echocardiography, and cardiac MRI. Additionally, he is dedicated to caring for youth with coronary artery anomalies and has had a research interest in myocardial stress perfusion assessment. He actively engages in research initiatives, exploring new technologies in cardiac imaging and leveraging artificial intelligence and machine learning to analyze cardiovascular images and patient data.

"It has been a wonderful experience learning about the Graeme McDaniel Foundation, the McDaniel family's journey, and Graeme's legacy. I'm sincerely grateful to the foundation for affording me the opportunity to reflect on my personal path and passion in pediatric cardiology. Most importantly, your inspiration and provision of cutting-edge technology have equipped me to study heart function with novel approaches which could potentially enhance the diagnostic toolkit for early detection of clinical decompensation and improve patient outcome. We feel honored to present our work as a moderated poster at the Annual Scientific Sessions of the American Society of Echocardiography in Portland, OR (June 2024). We have submitted another abstract utilizing left atrial strain as a novel marker to predict outcomes in patients with unrepaired congenitally corrected transposition of the great arteries and anticipate feedback in May 2024.

I am sincerely motivated by the opportunities to make meaningful impacts on the lives of young patients and their families by implementing best clinical practices and advancing our understanding and treatment of pediatric cardiac conditions through clinical research and education." -Dr. Doan

$50,000 to Texas children’s hospital heart center

continued support of our first Graeme McDaniel Research Scholar - Dr. Diwakar Turaga

Dr. Turaga was our 2022 Graeme McDaniel Research Scholar. After learning more about his findings and touring his lab, we were excited to continue supporting his groundbreaking research. "Complex congenital heart disease (CHD) patients invariably require complicated surgical repairs. Despite the best possible surgical repair, some of the patients develop heart failure. My research is focused on applying cutting edge genomic tools to understand why the heart muscle fails in these patients. The CHD heart muscle faces abnormally high amounts of stress and works tirelessly, and our recent results show that the CHD heart muscle ages faster than expected. Now that we have an insight into why these CHD hearts fail, we can start working on making the heart muscle stronger [by using precision medicine]." Dr. Turaga

In certain serious conditions like congenital heart disease, the RV may pump blood into the body instead of just to the lungs. In very rare cases, some people have what's called a 'super RV', where these stressed RVs continue to function well even into later stages of life. In this study, we looked at the genetic activity of ‘super RV’ from a 60-year-old person who had a specific type of congenital heart defect called congenitally corrected transposition of the great arteries (ccTGA). We found that in this person's RV, there were two important pathways that were more active than usual, a pathway related to insulin-like growth factor (IGF1) was more active and increased activity in pathways related to the growth of new blood vessels (angiogenesis). These findings suggest that in rare cases, the RV might last much longer by adapting to the extra strain by becoming more responsive to growth signals and by growing new blood vessels. Understanding how the RV adapts to increased stress is important for developing better treatments for congenital heart disease. Now that we know 'WHAT' genes to target, next steps will be 'HOW' to target the genes in the heart.  We can potentially repurpose existing drugs which target these pathways (used for cancer, endocrine diseases) to treat RV failure or use gene therapies to specifically treat heart cells. Both approaches are promising, now that we know 'WHAT' to target. The detailed paper can be found here.

Congratulations, Dr. Turaga, on receiving the 2025 Catalyst to Independence Award!

$ 50,000 to boston children’s hospital

3D MODELING AND FLOW SIMULATION FOR COMPLEX CONGENITAL HEART DISEASE - Drs. David Hoganson and Peter Hammer

The team at Boston Children's Hospital has created a program that uses imaging to create computational fluid dynamics (CFD) models of patients’ hearts. With these models, the team can offer much greater care to children that require surgical interventions. The models enable surgeons to simulate surgical repairs. In addition to having a much better idea of the patient’s specific anatomy before conducting the surgery, the team can use these modeled repairs to see how flowrates and pressures in the heart will react to the planned surgery. Another important use for these models is to give a much more detailed measurement for cutting 2D patches that surgeons will install into a 3D heart. Without the model, the surgeon is often making corrections to the patch during the actual surgery. The model can also be used to simulate how any surgical repair will react as the child continues to grow. With the money from The Graeme McDaniel Foundation, the team at Boston Children's Hospital will be able to hire additional engineers to expand the program and service more children. The ultimate goal is to roll this process out to major heart hospitals all across the country. This video focuses on the collaboration between engineers and surgeons, and the tremendous impact their work has had on so many families.

2023 Update “Support from the Graeme McDaniel Foundation has been critically important as we extend our clinical 3D modeling program into computationally planning patches for repairs inside the heart and can take those plans into the operating room for the surgeon to use as a guide to determine the shape and size of the patch.  This is a very exciting advancement to improve the geometric and clinical outcomes of some of our most complex repairs.” Dr. Hoganson

2024 Update Dr. Hoganson and his team were able to use the grant from The Graeme McDaniel Foundation to further their work using computational fluid modeling to treat CHDs. The team has been able to begin modeling complex mitral and tricuspid valves in CHD patients. The team was also able to hire an engineer to focus on using computational 3D modeling to design complex patches. Finally, they have also used the 3D modeling to show that many Fontan patients would benefit from upsizing the Fontan conduit as single-ventricle patients grow. By defining who would be a candidate for this procedure, many patients could have less long-term liver damage.

Final Update As we near the close of 2024, BCH will have modeled 1,500 pediatric hearts—300 more than we reported in June. In early 2025, the team will focus on a critical need for newborns with coarctation, a condition where a narrowing of the aortic arch impedes blood flow. Through the use of 3D modeling, surgeons will be able to precisely measure and create the necessary patch to repair the aortic arch, using cutting-edge laser guiding technology to ensure the patch is placed with pinpoint accuracy. In collaboration with industry partners, the team has developed a patch made from adult pulmonary arteries, allowing it to stretch as the child grows, effectively eliminating the need for future surgeries and significantly improving the long-term health and life expectancy of these children. While the progress at BCH has been incredibly promising, Dr. Hoganson and his team are committed to ensuring that this life-saving work extends far beyond our hospital. Their vision is to bring these benefits to institutions across the nation and around the world. Just this fall, they succeeded in getting billing codes approved for 3D modeling, virtual surgery planning, and flow simulations, a vital step toward ensuring that this work can be sustained long-term. For our patients with congenital heart disease, every millimeter matters. This groundbreaking technology is helping us achieve the best possible outcomes, ensuring that our young patients not only survive but thrive. Learn more here: BCH Blog Article and NY Times Podcast - Episode 4.

$100,000 to polyvascular

A large percentage of CHD patients require valve replacements. The good news is that valve repairs have improved greatly over the years. The bad news is that there isn’t a good source of artificial valves for doctors to use on young children. Typically, the goal is to give the child enough time to grow large enough that the smallest available adult valve can be used. The problem is that these valves are still typically too large, and they can cause issues that require additional intervention. PolyVascular is a company founded by doctors with the goal of developing artificial valves that are sized specifically for small children. Because the market for adult valves is so much larger than valves for young children, these children’s valves have never been able to attract enough funding to get a product from design all the way to market. By raising money from The Graeme McDaniel foundation and others, PolyVascular will develop a valve that is specifically designed for small children. They will pair the valve with a delivery system that will allow the valve to be placed by catheter instead of open-heart surgery. Hospital time will be greatly reduced and future complications from a poorly sized valve will be eliminated.

2023 Update In the six months since receiving funding from The Graeme McDaniel Foundation and other supporters, PolyVascular has made significant strides in advancing their mission to develop artificial pulmonary valves tailored for small children with congenital heart defects. The Graeme McDaniel investment has helped fuel extensive valve testing and the beginning of a robust pre-clinical study. 

Valve testing includes ensuring the deliverability, performance, and durability of the valve design. Valve testing is a rigorous process starting with the careful manufacturing and inspection of the valve. These benchmark tests help PolyVascular to ensure the highest quality standards are met for their valves. Testing over this time showed favorable results, exciting the team as they moved into the pre-clinical study. 

The 90-day pre-clinical study began at the end of 2023 and is ongoing. Initial results from the study yielded remarkable achievements in performance and durability.

The valve testing and pre-clinical study mark two very significant achievements for the team. These two milestones were met due to the amazing support of our investors including the Graeme McDaniel Foundation. PolyVascular is excited to continue their work in 2024 and report further success!

$100,000 to University of texas health science center and the children’s heart institute at children’s memorial hermann hospital

Cellular Signaling and Stem Cell Therapy in Congenital Heart Disease - Dr. Damien LaPar

The proposed research plan will provide critical data related to the underlying inflammatory signaling mechanisms and downstream cellular effects that promote the deleterious development of endocardial fibroelastosis (EFE) and scarring in the developing heart. A new in vitro model of EFE will serve as a novel experimental platform to support the development of future treatment and therapeutic options for affected babies. The primary goal is to investigate cellular mechanisms to identify progenitor cell (stem cell) - based therapies to combat scarring of the inner surface of the heart that leads to abnormal functioning and development of the heart in congenital heart disease.

As lead scientist, Dr. Damien J. LaPar MD, MSc states, “We believe that by understanding the underlying mechanisms, we are going to be able to develop cellular and regenerative therapies either through stem cells or pure cellular-level signaling cascades that could arrest that process, [then] reprogram those scar-forming cells so they can form [healthy heart] muscle.”

2023 Update

$50,000 to Texas children’s hospital heart center

The Graeme McDaniel Research Scholar (year 1) - Dr. Diwakar Turaga

The Graeme McDaniel Research Scholar will be awarded to one of Texas Children’s Hospital’s faculty over a period of one year to support their work in preparation for future applications for ongoing congenital heart defect research funding. Through this mechanism, the fund will achieve significant financial leverage through its support of bright early-career researchers enhancing their ability to obtain career-defining long-term research funding. The potential to follow these advanced individuals and maintain relations with them as they grow in their career is invaluable. With a 3-year commitment, we look forward to funding three Graeme McDaniel Research Scholars.

"Complex congenital heart disease (CHD) patients invariably require complicated surgical repairs. Despite the best possible surgical repair, some of the patients develop heart failure. My research is focused on applying cutting edge genomic tools to understand why the heart muscle fails in these patients. The CHD heart muscle faces abnormally high amounts of stress and works tirelessly, and our recent results show that the CHD heart muscle ages faster than expected. Now that we have an insight into why these CHD hearts fail, we can start working on making the heart muscle stronger [by using precision medicine]." Dr. Turaga

You can read more about Dr. Turaga’s work in his Nature paper and in this interview.