January 2024 PKD e-News
SUPPORT
Mind Matters
Come join us on February 21st at 7pm EST for a special get-together, PKD Mind Matters: "Navigating PKD Disclosures." We're here to chat about the ups and downs of talking about polycystic kidney disease (PKD) in our lives.
In this confidential one-hour session, we'll explore how to authentically share your PKD journey with others — whether it's with your family, friends, healthcare pros, or even at work. No need for fancy words or complex theories; we're just having a heart-to-heart.
This is a new format developed especially for PKD Mind Matters; it's a warm and supportive gathering where everyone's voice matters. We're all in this together, creating a safe space where you can feel heard and understood.
Let's build a tight-knit community that understands what it's like to face the challenges of PKD. We'll swap stories, gain some wisdom, and figure out how to talk about PKD in a way that feels right for you. So, mark your calendars, and let's empower each other to face these important chats with heart, strength, and a mutual commitment to well-being. Can't wait to see you there!
Volunteer
We're gearing up for our annual Walk to END PKD, and we need your amazing energy to make it a success! Whether you're a seasoned supporter or a first-timer, your warmth and enthusiasm are exactly what we need.
We're looking for passionate individuals to fill vital roles such as Walk Coordinator, Event Crew Members, and Fundraising Committee Members. Your support fuels our mission, and we welcome new faces to join our close-knit community.
Let's create lasting memories, build meaningful connections, and stride together towards a PKD-free future. Interested in volunteering? Reach out to us by filling out the contact form on our website, and let's make this year's walk unforgettable!
LEARN
SMART goals
The new year is finally here, and it’s the perfect time to set intentions for 2024. In this month’s blog, registered dietician Emily Campbell reviews strategies for success when setting health and nutrition goals to manage PKD.
Webinar
The video from our recent webinar on Itching & CKD is now on YouTube! Dr. Karthik Tennankore talked about chronic kidney disease associated pruritus (itching) (CKD-aP), including how CKD-aP is screened, how to talk to your nephrologist about itching associated with CKD, and treatment options, including new therapies.
Watch the video now on our YouTube channel!
Upcoming
BC Renal, one of our valued partners, is offering some upcoming webinars designed for patients with kidney disease who are not on dialysis. Depending on the topic, patients on dialysis may find the session helpful and are welcome to attend. Family and friends of patients with kidney disease are also encouraged to attend. Click on the links below to see details, or visit BC Renal's patient education web page to learn more and register.
- Getting to Know Your Lab Work – Feb 2, 1:00-2:30pm (PT)
- Kidney Transplant & Finding a Living Donor – Mar 8, 1:00-3:00pm (PT)
- Choosing a Treatment for Kidney Failure – Apr 26, 1:00-3:00pm (PT)
AWARENESS
Voices of PKD
"My name is Monique, and this is my story about being a living kidney donor.
"My husband David and I are both 58. David has PKD, as does one of our children (that we know of). There's a lot of PKD in my husband's family.
"On October 29, 2021, I donated my left kidney to my sister-in-law, Sheena.
"I want everyone to talk about living transplants so that my kids, and my nieces and nephews who are likely going to need a kidney at some point, have a better chance at finding a living donor."
Read Monique's entire story here on our website.
TAP
Whether you're an organ recipient or a living donor, embark on your kidney transplant journey with the warmth of peer support through the Transplant Ambassador Program (TAP). TAP brings kidney patients and living donors together to navigate the road to transplantation.
The Transplant Ambassadors, who are kidney recipients or donors themselves, open their hearts to share personal experiences, offering a caring guide through your unique journey. Join the Canada-wide TAP programs, and let compassionate companionship illuminate your path to renewed hope and well-being. You're not alone; TAP is there for you every step of the way!
Learn more about TAP, and how to become a part of their peer support program, here!
Finding donor
Will you need a kidney transplant in the future? Do you worry that you wouldn't be able to find a living donor? You may be interested in a free video program called "Having Your Living Donor Find YOU!" which educates patients about transplant, and gives them the tools to mount a successful living donor campaign.
Click here to access the full program, or watch this video recording from our 2022 PKD Summit, where founder Harvey Mysel talks about the program he created.
In the news
Of the 2,936 organ transplants performed in Canada in 2022, 20 per cent were from living donors, according to data from the Canadian Institute for Health Information (CIHI). That same year around 273 people died while waiting for an organ donation.
Among transplants from living donors in 2022, just under half were unrelated to the recipient. Read the heartwarming story of how two women made living donations to strangers.