September 30, 2020
September 2020 PKD e-News
September 2020
Greetings!
Welcome to the PKD Foundation of Canada's September e-News! We have provided information important to helping you take action in your journey with PKD.
Learn
Attention BC Residents: Save the Date for BC Renal's Upcoming Webinar, 'Kidney Transplant and Finding a Living Donor!'
On October 1st, 3-5pm PST, BC Renal and BC Transplant will be holding one of their Transplant Education Sessions.BC Renal periodically co-hosts province-wide transplant education sessions for BC adults considering receiving a kidney transplant and those considering becoming a living donor. The content of sessions for interested Kidney Care Clinic patients, families, friends and potential living donors includes:
- Transplant as a Treatment Option
- Finding a Living Donor
- Becoming a Kidney Donor
Presenters typically include:
- a registered nurse with the Kidney Recipient Pre-Transplant Program
- a transplant recipient who received a kidney from a living kidney donor
- a registered nurse with the Living Kidney Donor Program
- a transplant social worker
- a living kidney donor
To register click here!
The ARPKD/CHF Virtual Conference will be held on Saturday October 3rd, 2020.
ARPKD/CHF Virtual Conference: Saturday, October 3rd
The ARPKD/CHF Virtual Conference will be held on Saturday October 3rd, 2020.
Presentations will address autosomal recessive polycystic kidney disease, liver transplant, spleen guards, and a NIH research update on the ARPKD/CHF Natural History Study, followed by Q&A.
The original conference was scheduled to be held at The Children’s Hospital of Philadelphia (CHOP), but due to the COVID-19 pandemic, it will be held online.
Speakers will include:
Meral Gunay-Aygun, M.D. - Professor of Pediatrics and Genetic Medicine - Director, Metabolic Genetics Clinic at Johns Hopkins University School of Medicine, and as Primary Investigator for the “ARPKD/CHF Natural History Study” at the National Institutes of Health on “Prospective Evaluation of Kidney and Liver disease in Autosomal Recessive Polycystic Kidney Disease-Congenital Hepatic Fibrosis.”
Erum Hartung, M.D. - Nephrologist, from the Combined Kidney/Liver Program at the Children’s Hospital of Philadelphia, on the “Kidney, Pathology, Clinical Manifestations, and Long Term Outcome.”
Dr. Jessica Wen, M.D. - Hepatologist, from the Combined Kidney/Liver Program at the Children’s Hospital of Philadelphia, Combined Kidney/Liver Program, on “Liver Transplant in ARPKD/CHF.”
Christopher Nelson, Certified Prosthetist Orthotist- Clinical Director at Boston Orthotics & Prosthetics on “The Spleen Guard, Aspects of Clinical Assessment, Measurement, and Fabrication.”
Web conference will begin at 10 am Eastern Standard Time (EST). This is a free event!
Web conference will begin at 10 am Eastern Standard Time (EST). This is a free event!
Register Here!
A case series study: Experience of People with Autosomal-Dominant Polycystic Kidney Disease (ADPKD) with Ketogenic Diets- Feasibility & Effects
When: Thursday Oct. 29th: 7-9pm EST
Upcoming Webinar: Experience of People with ADPKD with Ketogenic Diets- Feasibility & Effects
A case series study: Experience of People with Autosomal-Dominant Polycystic Kidney Disease (ADPKD) with Ketogenic Diets- Feasibility & EffectsWhen: Thursday Oct. 29th: 7-9pm EST
Where: From the comfort of your home!
Recently, the Weimbs laboratory has published the first evidence that induction of ketosis via ketogenic diet or intermittent fasting ameliorates disease progression in animal models of PKD.
Due to their common use for weight control or for other health benefits, ADPKD patients may already have experimented with ketogenic dietary interventions. This case series study was designed to gain first insights about possible effects and the feasibility of ketogenic diets for ADPKD patients.
Sebastian Strubl, a Postdoctoral Researcher at the Department of Molecular, Cellular & Developmental Biology and Neuroscience Research Institute from the University of California Santa Barbara will be presenting his preliminary findings of his study on ADPKD and ketogenic diets, and taking questions afterwards.
This webinar will give PKD patients and their loved ones the opportunity to learn about the latest PKD research as well as ask questions to Dr. Strubl. All are welcome. We hope you can join us!
Recently, the Weimbs laboratory has published the first evidence that induction of ketosis via ketogenic diet or intermittent fasting ameliorates disease progression in animal models of PKD.
Due to their common use for weight control or for other health benefits, ADPKD patients may already have experimented with ketogenic dietary interventions. This case series study was designed to gain first insights about possible effects and the feasibility of ketogenic diets for ADPKD patients.
Sebastian Strubl, a Postdoctoral Researcher at the Department of Molecular, Cellular & Developmental Biology and Neuroscience Research Institute from the University of California Santa Barbara will be presenting his preliminary findings of his study on ADPKD and ketogenic diets, and taking questions afterwards.
This webinar will give PKD patients and their loved ones the opportunity to learn about the latest PKD research as well as ask questions to Dr. Strubl. All are welcome. We hope you can join us!
Watch the Webinar Recording Now: Managing Depression and Anxiety with Polycystic Kidney Disease
Thank you to those who joined us on August 27th for our webinar, 'Managing Depression and Anxiety with Polycystic Kidney Disease.'COVID-19 is a serious health concern and the impact on our lives continues to evolve on a daily basis. In these unprecedented times, we all need to be mindful of the effects these extra stressors have on our mental health.
The PKD Foundation of Canada was proud to present this complimentary webinar, 'Managing Depression and Anxiety with Polycystic Kidney Disease.' This webinar gave our community the opportunity to ask questions to Carla Williams, a Kidney Care Clinic and Transplant social worker.
This presentation focused on managing depression and anxiety while also living with a chronic health condition, such as polycystic kidney disease. Additional talking points included:
- Living with a chronic health condition and its affect on mental health
- How social workers can support those living with chronic illness who are experiencing depression and anxiety
- Mental health assessment and support resources that are available online
- Impacts of COVID-19 on mental health and wellness
Children With Chronic Kidney Disease: Tips for Parents
"If your child has been diagnosed with chronic kidney disease, you are no doubt feeling distressed and bewildered. These feelings are normal. And once you realize that your child's illness is a reality the family must accept, you can develop some practical ways to cope with the day-to-day aspects of it." The National Kidney Foundation provides a list of helpful tips for parents of children who have been diagnosed with chronic kidney disease here.
Colleen Murray, From Qualicum, Finds Her Perfect Match
"Colleen Murray knew she’d found someone special when Phil Henderson came into her life four years ago.“When we first started dating I was just like whoa where have you been? He treats me so well,” said the Qualicum woman.
And in 2020, they found their perfect match was also a lifesaving one."
Read more about Colleen finding her perfect match, in more ways than one, here.
Awareness
Walk to END PKD on Sept. 27th a Family Cause for Yarmouth-Saint John Team
Adam Graham and his family participated in the Walk to END PKD on Sunday September 27th in solidarity with families like themselves, who are affected by PKD.
When talking about family planning and the possibility of passing PKD to his children, Adam said, "It’s definitely scary, like so many things about parenting, but we’re also really hopeful that research will continue, and a treatment may be found. That’s why I’m so thankful for the PKD Foundation and for everyone who supports the Walk to End PKD.”
Adam’s family planned to walk a four km loop in Hebron. Their team is called the Saint John-Yarmouth Express. Family members visit back and forth from Yarmouth to Saint John regularly and it’s become a familiar route. “Like an express bus or train route. We’re in different places but connected,” says Adam.
Secondly, the team name goes along with the movement idea of the Walk to End PKD, signifying a united group, moving towards treatment, and a cure for PKD, one of the most common life-threatening genetic diseases affecting thousands in Canada.
To read the full article, click here!
When talking about family planning and the possibility of passing PKD to his children, Adam said, "It’s definitely scary, like so many things about parenting, but we’re also really hopeful that research will continue, and a treatment may be found. That’s why I’m so thankful for the PKD Foundation and for everyone who supports the Walk to End PKD.”
Adam’s family planned to walk a four km loop in Hebron. Their team is called the Saint John-Yarmouth Express. Family members visit back and forth from Yarmouth to Saint John regularly and it’s become a familiar route. “Like an express bus or train route. We’re in different places but connected,” says Adam.
Secondly, the team name goes along with the movement idea of the Walk to End PKD, signifying a united group, moving towards treatment, and a cure for PKD, one of the most common life-threatening genetic diseases affecting thousands in Canada.
To read the full article, click here!
September 4th was National Polycystic Kidney Disease Awareness Day!
Once again, Health Canada recognized September 4th as National Polycystic Kidney Disease (PKD) Awareness Day - a special day devoted to raising awareness of this life-threatening, genetic disease.Though PKD affects thousands in Canada and millions worldwide, many people have never heard of it. We are thrilled to announce the 2020 #PKDAwarenessDay campaign secured a record-setting number of local proclamations, on top of the dozens of flag raising ceremonies and monument lightings! We are extremely grateful to the 33 town and cities who have joined Health Canada in proclaiming PKD awareness day. This is HUGE support for the Canadian PKD community and we couldn't be more appreciative of all the volunteers, Chapter Coordinators, Mayors + Councillors that helped to make this happen. Together, we will #EndPKD!
Check out all of the amazing photos from PKD Awareness Day here!
Voices of PKD- Shealeen Boyce
"I was diagnosed with polycystic kidney disease (PKD) in 1996 at the age of 35. There is no history of PKD on either side of my family, so I have what is called a mutation. Both my children have tested negative for PKD, so that is a huge relief as the disease will stop with me."To read more about Shealeen's story and share your PKD story with us, visit endpkd.ca/voices_of_PKD
Shealeen's story is also available in French here!
SUPPORT
We Want To Hear From You!
Your opinion matters to us and we'd like to know more about your journey with PKD to help serve you better! If you are living with PKD, or a care-giver, friend or family member of someone who has PKD, this survey is for you!You can complete our survey in English here!
You can complete our survey in French here!
Help People SEE ADPKD: Share Your Story Today!
Polycystic kidney disease (PKD) is one of the world’s most common, life-threatening genetic diseases. Your stories can help people paint a more powerful picture of PKD and the lives it affects.
Help give a voice to a widely unknown disease by sharing your story here.
You can read some of our Voices of PKD here!
Help give a voice to a widely unknown disease by sharing your story here.
You can read some of our Voices of PKD here!
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