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Here’s an Open Report from the Children’s Hospital  Colorado about the work they are doing:

Thank you for the Jayden DeLuca Foundation’s generous support of our pulmonary hypertension (PH) program and pediatric cardiac research at Children’s Hospital Colorado’s Heart Institute.

Below is a consolidated list from Dr. Ivy and his team of the projects supported by the generous gift from the Jayden DeLuca Foundation. It has been an exciting and productive two years! We are grateful.

The team has had 14 peer-reviewed papers published over the last two years. Highlights from this work include:

1. Understanding of how the right heart affects the left heart in pulmonary hypertension;
2. Understanding how cardiac MRI (no radiation) can be used to evaluate children with pulmonary hypertension (Drs. Uyen Truong and Schafer);
3. Publishing guidelines for other physicians to use in treating pulmonary hypertension;
4. Being able to evaluate the right heart function using three-dimensional echocardiography in the echo lab by Dr. Pei-Nei Jone. All of these research breakthroughs result in fewer heart catheterizations for our young patients, which makes parents happy.

In addition, the Jayden DeLuca Foundation’s gift has supported the work of Dr. Uyen Truong, who has received an NIH mentored scholar award to support her research in MRI ($170,000 a year for 5 years), which means your investment has a more than ten – fold return for new research in Cardiac MRI!

1. Building an MRI-compatible ergometer device, to allow exercise stress testing in kids with PH;
2. In Summer 2017: starting recruitment for the MATCH-uPP study (MRI and catheterization hemodynamics in pediatric pulmonary hypertension), in which we are replicating the nitric oxide challenge conventionally does in the Cath lab; but now they are doing it in the MRI scanner, which means no radiation, no sedation, and no catheter manipulation. Preliminary data show that there are quantifiable changes in the vascular flow patterns with and without nitric oxide. I have attached an abstract that was accepted for presentation at the Society of Cardiac Magnetic Resonance in Barcelona next near; and
3. Validating their research app and will be working with the FDA to roll it out with PH kids.

Your gift has also supported the work of Dr. Michael Yeager, along with his assistant, Kelley Colvin, and their team, allowing them to do the following:

1. They purchased a -80 Celsius freezer, absolutely vital for storage of patient blood, cells, and tissue samples for cell and molecular analyses;
2. They submitted 5 original manuscripts citing DeLuca Foundation funding, each now in various stages along the publication process; these papers cover heart/lung disease as it relates to lymphatic vessels, white blood cells as biomarkers in kids with and without congenital heart disease, how heart cells are attached to one another differently during right heart disease, and how lung blood vessel fibroblast cells function differently in pulmonary hypertension;
3. They developed two new methods of growing lung vascular cells in 3 dimensions: 1) 3D-printed lithographs in silicone molds, 2) a portable 3D system that incorporates fluid flow through a cell culture. They have made videos of these in action. These tools will allow the team to model the lung blood vessels more like the real thing so that the results they get translate into therapies faster and more effectively;
4. Based on data from #2-3 above, they were awarded a $50,000 grant from the Jerome LeJeune Foundation. They support basic research in genetic diseases– in the case of Dr. Yeager’s team, to study aspects of lung blood vessels in kids with Down syndrome with and without congenital heart disease. They are re-submitting a similar grant to the NIH on Nov. 5 for ~$400,000. It just missed the funding cutoff when they submitted it in February this year, so they are optimistic on the resend.

In addition to these projects, the team is seeking support to help understand pulmonary vein stenosis. We aim to enter the information from 40-50 children with pulmonary vein stenosis into a registry sponsored by the Hospital For Sick Children in Canada. This will require about $30,000 to pay a research coordinator to find and enter the data over the next year to begin to understand how to monitor and treat this challenging problem.

Children’s Hospital Colorado 

“I wanted to thank you again for your gift. The money has already gone to good use. There was a patient from Idaho with PH that needed oxygen on the airplane and we could not get it funded, so we used Jayden’s fund to pay for it so the family could go home sooner. We have recently sent in 4 different pulmonary hypertension papers to medical journals on different aspects of PH in children.”

- Dr Dunbar Ivy,  The Children's Hospital - Denver, Colorado

“Fifty years ago we would have known her heart was the problem but have not been able to repair it. Fifteen years ago the heart/lung bypass machine was not advanced enough and would have destroyed her kidneys during her surgery. It is only today, with all our medical advancements, that my baby could be ok. The words thankful do not even begin to describe how we feel.”

- Gracen’s Mom