Robert A. Star, M.D., is the director of the Division of Kidney, Urologic, and Hematologic Diseases at the National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK), part of the National Institutes of Health (NIH). aakpRENALIFE interviewed Dr. Star to learn more about his career and NIDDK’s current kidney-related research projects: As the leader of a major Federal government program at the National Institutes of Health, you serve America and our fellow citizens as a U.S. civil servant. Can you describe why you chose to serve our country as a public servant?Read More
By Deborah Pelaez, AAKP Marketing and Communications Manager In honor of National Kidney Month, AAKP is sharing stories from patients, a caregiver and a healthcare professional on their unique outlook on life and kidney disease awareness. You can help spread the word about kidney disease this month by sharing your personal story and perspective with friends, family and the kidney community – kidney disease is a silent killer – let’s end the silence.Read More
By Denise Steininger, AAKP Ambassador My name is Denise Steininger. I was diagnosed with IGA Neuropathy in Dec of 2017. My creatinine went from 2.0 to 4.0 literally overnight, and I was hospitalized for a week. I couldn’t understand what the big fuss was since I didn’t feel sick but my blood pressure was high, and I was bloated. It was a lot to take in, diet changes and dialysis looming over me. There were so many things to wrap my head around and the emotions I had were overwhelming. I was told I needed to see a nephrologist for the rest of my life.Read More
By Jim Myers, AAKP Board Member, Ambassador Posted: February 5, 2019 I have often been asked why I take such long walks. I was in my transplant doctor’s office a few months back. He gave me that look. You know the look. Like that look your Dad used too give you before the stern lecture was coming. The serious discussion lecture. He told me I was not getting enough exercise, and I should try to get out more. He suggested walking. I’ve never been an athlete. I have avoided exercise in the past. I’ve always been an academic. I hated gym class. But I knew he was right.Read More
Welcome to 2019! As we enter the new year, I want to thank AAKP’s professional staff as well as our loyal patients, caregivers, and professional members for all of their support during a very successful 2018. Also, I want to acknowledge the tremendous support received from our allies and industry partners who embraced the concept of patient engagement and have worked with us to infuse AAKP’s culture further into the renal community. Much of AAKP’s success is built upon the implementation of a National Strategy geared at leveraging our unique position within the renal community.Read More
AAKP Ambassador, Bruce Tippets, a journalist in Utah, shares his excitement in being asked to share his kidney story at AAKP’s Capitol Hill Day in March for National Kidney Awareness Month. Read below. January 28, 2019 –When I checked my email on Jan. 9, I couldn’t believe it, but I was invited to participate March 5-6 at the National Kidney Patient Summit in Washington D.C. by American Association of Kidney Patients (AAKP). This is the second year in a row, I will be able to represent AAKP at the summit.Read More
By Melissa Bensouda, AAKP Ambassador Photo: Representing Missouri at RPA Advocacy Day on Capitol Hill – Dr. Gary Singer, MD; Melissa Bensouda, AAKP Ambassador MO; Kinza Bensouda (daughter) At one point in my childhood I had dreamed of becoming a nurse. That dream quickly changed when I learned about the “behind the scenes” things nurses did to care for sick patients – my stomach wasn’t cut out for it. I would have never imagined that my desire to help sick patients would now be best used to save my own life with home dialysis.Read More
AAKP BOD and Ambassador Dave White Describes his Experience at the 2018 Summer Transplant Games of America
By AAKP BOD and Ambassador, Dave White Dave White at the Transplant Games of America I heard a supporter yell “Go Maryland!” while I was chugging my way around the last turn into the home stretch. I saw three runners ahead of me and said to myself “oh well, no medal today.
By Kent Bressler, AAKP BOD and Ambassador My nephew, Todd Bressler, is a kind, mellow, hardworking father of three. He and his wife Shanna found out that their fourth child, who they would name Grayson, would be born without kidneys and profoundly limited lung function. When Todd called and told me I thought immediately of Representative Jaime Hererra-Beutler, (R-WA) who received news that their child would be born without kidneys in 2013.Read More
The American Association of Kidney Patients (AAKP), the largest independent kidney patient organization in the U.S., believes The Dialysis PATIENTS Demonstration Act (H.R. 4143 / S. 2065) severely restricts patient freedom of choice. CLICK HERE to take action on this important issue. Based on a detailed analysis with our patient and professional allies, we believe this legislation is contrary to the best interests of patients. Instead, it protects the status quo in kidney care at the cost of patient freedom and meaningful innovation.