by Sydney Johnston | Dec 1, 2022 | ARPKD, Caregivers
Published on December 1, 2022 | How do you know when it’s time to skip waiting for a doctor’s appointment and going straight to the ER? That’s a decision many parents face as caregivers to children with ARPKD. There are a few things that can help you...
by Sydney Johnston | Nov 14, 2022 | Awareness, Caregivers
Published on November 14, 2022 | In November, we celebrate National Family Caregivers Month. Family caregivers are a crucial pillar of our healthcare system, proving necessary care to their loved ones. Jennifer Visda knows firsthand what life is like as a family...
by Sydney Johnston | Oct 15, 2022 | ARPKD, Caregivers, Family Life
Published on October 15, 2022 | Today is Pregnancy and Infant Loss Remembrance Day. Every October 15, we honor we honor lost pregnancies and infant deaths which includes miscarriages, still births, and of course, ARPKD. A rare genetic disorder, autosomal recessive...
by Sydney Johnston | Nov 9, 2021 | Awareness, Caregivers
Published on November 9, 2021 | November is National Family Caregivers Month. During this month, we recognize the important role of family caregivers. It offers an opportunity to raise awareness of caregiving issues, educate communities, and increase support for...
by Sydney Johnston | Sep 22, 2020 | Caregivers, Education
Published September 22, 2020 | When your loved one has PKD but lives hundreds of miles away or more, staying involved as a PKD caregiver can be trying. Mary Perry, of Antioch, Illinois, learned that firsthand when her son Michael was living in South Carolina and was...
by Sydney Johnston | Jun 2, 2020 | Advocacy, Caregivers, Education
Published June 2, 2020 When a loved one is diagnosed with PKD, it’s important to learn how to be a PKD advocate. Glenna Frey knows exactly what that’s like. Living in Whitehouse, Ohio, Glenna and her husband, Bob, often drive two hours from their home to...
