Taylor StearnsADPKD, Living with PKD PKD has caused my family so much hardship. Growing up, I watched my mother suffer as her health declined. She was always in so much pain, never wanting to leave the house because she was so uncomfortable. Finally, at age 41 she was put on dialysis, and she was beginning to manage her symptoms better. About a month or so later, a massive aneurysm we didn’t know about ruptured in her brain, and after nine long days in the Neuro ICU, we decided to put her on comfort care, knowing her wishes.
Oligohydramnios. It’s an unfamiliar word to most. As a diagnosis to a pregnant mother, it’s terrifying. For Florence, a routine visit to her obstetrician in Guatemala City for an ultrasound at 31 weeks brought a diagnosis that changed everything. It is a condition that affects development of the baby and can cause preterm birth. Florence’s son, Fernando, was born at 32 weeks in April of 2016 in Guatemala. Decisions needed to be made quickly. Fernando was taken by air ambulance to the Neonatal Intensive Care Unit (NICU) at Johns Hopkins All Children’s.
I remember the day my 14-month-old son Orion was diagnosed with Angelman syndrome – devastating, crushing, hopeless. I heard words that no parent ever imagines hearing about their child.
This is a point/counterpoint one year after diagnosis that I hope will give you hope for a future – not at all as you expected – but richer than you could ever imagine.
“Your son has Angelman syndrome.” I had never heard of that before diagnosis day.
Five years ago, Mike Schuster’s life changed forever.
That’s when the Norman, Oklahoma, resident was diagnosed with glioblastoma, a form of brain cancer and the same disease took the lives of Sen. Edward Kennedy and Sen. John McCain.
As Schuster nears the five-year anniversary of his diagnosis with the deadly cancer, he’s almost tripled the average life expectancy for patients with glioblastoma.
As an athlete for most of my life, I have been in tune with my body and able to notice differences due to a change in my training or injuries resulting from a game. When I was diagnosed with ALS in August of 2018, I knew how important it would be to keep in tune with the changes in my body as my disease progressed.
Neeta Thakur, MD, MPH, an assistant professor at the University of California, San Francisco School of Medicine, is driven to understand the social determinants of health and compelled to make a difference in communities of those affected. In 2014, Dr. Thakur received an ATS Foundation Recognition Award for Outstanding Early Career Investigators, and today her research on the stress biomarkers of asthma comorbidity, as they relate to poverty, has expanded.
My IBD journey began when I was 15. I remember being doubled over in pain as I ate a celebratory chocolate chip cookie after a successful track meet. I went from having boundless energy, to dragging myself out of bed over the course of just a few weeks due to an unshakable fatigue. That pain and fatigue became the reason for months of missed school and social occasions, dropping out of cross country races before they even began, and quitting dance altogether.
Year Funded: 2020-2022
“Cancer thrives when it’s able to hide in the dark corners of the human body, unseen by the natural immune system,” says Sidi Chen, PhD, assistant professor in the Yale University School of Medicine Department of Genetics, Systems Biology Institute and Cancer Center (West Haven, CT). “Metaphorically, I’m shining a bank of lights on cancer cells to enable the immune system’s defenses to find them and destroy them.”
Turning on a Dime: Applying amfAR’s Research Expertise to COVID-19
Kevin Robert Frost, Chief Executive Officer, amfAR
Sarah Byrd says she owes her life to Dr. Curt Civin, a renowned leader and innovator in laboratory research and pediatric oncologist specializing in leukemia research at the University of Maryland whose work is funded by the National Foundation for Cancer Research.