by PKD Foundation Staff | Mar 4, 2019 | Advocacy, Awareness, Education
This past week, 450 rare disease advocates and patients descended on Washington, D.C., for Rare Disease Week, and I was glad to be amongst them. It was a packed agenda with four days of activities and awareness opportunities and I’d like to share the highlights:...
by PKD Foundation Staff | Feb 14, 2019 | Awareness, Transplantation
We’re spreading double the love today for National Donor Day! In the US alone, more than 120,000 people are waiting for a life-saving organ donation. We recently reached out to New England Chapter Co-Coordinator Judy Ehrlich to share how her donor has impacted...
by PKD Foundation Staff | Dec 6, 2018 | Awareness, Positivity
Just last month, on Nov. 13, the PKD Foundation sponsored its second Annual PKD Comedy Night at Carolines on Broadway in New York City and raised a grand total of $121,159.88! Carolines on Broadway, located in the heart of Times Square, is New York City’s premier...
by PKD Foundation Staff | Nov 16, 2018 | Awareness, Education, Research
#GivingTuesday is right around the corner, and this year, we’re asking: what can you give? Can you give a donation? Our goal for #GivingTuedsay is to raise $18,000 — the amount needed to fund ten weeks of PKD research. When you select the PKD Foundation as your...
by PKD Foundation Staff | Jun 17, 2018 | Awareness, Family Life
Hello, and Happy Father’s Day to all the dads! My name is Ed McVey and my daughter Meredith has PKD. When I was asked to tell our story for this blog post, I realized how important it is to talk about the disease and raise awareness. My daughter was diagnosed with PKD...
by PKD Foundation Staff | Apr 3, 2018 | Awareness
Polycystic liver disease (PLD) often goes hand in hand with PKD. We recently reached out to PKD community member and advocate Jenn Tompkins to share her experience as a PLD patient, how she has connected with others, and little-known facts about the disease: PKD...
