projects
Benjamin mark Banks jr. Memorial research fund
This fund has supported the Benjamin M. Banks Jr. Memorial Medical Trial at Children’s Hospital of Philadelphia (CHOP) This is research related to ARPKD, intracranial aneurysms, vascular abnormalities, and better care for children and young adults. So that no child has to face what Ben did.
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Research Feature
Children’s Hospital of Philadelphia
Pediatric Nephrology
Project Profile / Research Feature
Children’s Hospital
of Philadelphia
Project Summary
Intracranial Aneurysms and
Vascular Abnormalities in ARPKD
Institution
Children’s Hospital of Philadelphia
Research Area
Pediatric Nephrology
Study Focus
ARPKD / Vascular Abnormalities
Publication
Research Feature
The Research
Intracranial aneurysms and vascular abnormalities in ARPKD
Unlike the dominant form of polycystic kidney disease (ADPKD), autosomal recessive polycystic kidney disease (ARPKD) has historically not been thought to cause an increased risk of intracranial aneurysms (ICA; outpouchings of arteries in the brain) or other problems with blood vessels (vascular abnormalities). However, there have now been six reported cases of ICA in children and young adults with ARPKD, and another two individuals reported with aneurysms in other parts of the body. In some cases, these aneurysms caused significant complications such as bleeding in the brain or even death.
Despite the potentially devastating effects of ICAs and other blood vessel problems, we do not know how commonly they occur in individuals with ARPKD and whether they can be prevented, because to our knowledge there have been no prior systematic studies to investigate this issue.
Our overall objective is to determine how common ICA and blood vessel abnormalities are in individuals with ARPKD, and to study potential risk factors for these problems, such as high blood pressure, abnormal function of the cells lining the blood vessels (endothelial dysfunction), and increased stiffness of the blood vessels. This study will yield important information to guide the care of individuals with ARPKD by helping to inform whether screening for ICA and other blood vessel problems is indicated, and by identifying potentially treatable risk factors to prevent vascular complications.
Biography
Dr. Erum Hartung, MD, MTR
Dr. Erum Hartung, MD, MTR is a pediatric nephrologist at Children’s Hospital of Philadelphia and an Assistant Professor of Pediatrics at the University of Pennsylvania. Her clinical and research focus is in polycystic kidney disease, particularly autosomal recessive polycystic kidney disease (ARPKD). She co-directs the Combined Kidney/Liver Program at CHOP, which specializes in the care of children with ARPKD and other genetic kidney/liver diseases and ciliopathies. Her research aims to accelerate the development of new treatments for ARPKD through observational and database studies to better define the natural history and complications of ARPKD, and through imaging studies to develop new biomarkers of kidney and liver disease progression.Make it stand out.
ARPKD OUTSIDE THE KIDNEYS: ANEURYSMS AND LIVER DISEASE
Goal
One huge goal of ours was to have research done to study the risk factors of brain aneurysms in children with ARPKD. Playing a part in getting this study off the ground is truly one of the most gratifying & proud moments of our families lives.
Please take time to watch this webinar put on by the PKD Foundation & Dr. Hartung. She eloquently explains this complicated issue and the goals of the medical study funded by the Ben Banks Foundation & PKD Foundation.
If you want to skip to the parts that specifically address Ben and our foundation they are at 2:30 & about 12 mins into the video.
We hope this research eventually leads to nobody having to go through what Ben did.
Help Ben’s Legacy
Keep the Journey
Moving Forward
Every donation, volunteer hour, and shared story keeps Ben’s legacy alive and puts more families on the road to hope.
