Reflecting on 2021, Planning for 2022

Published on December 14, 2021 Much like 2020, this year had its ups and downs. Challenges and celebrations. At the PKD Foundation, we worked to bring the PKD community the right resources, the right way, and the right time. From continuing our virtual events to expanding our education initiatives, we found ways to stay connected. Let’s take a look back at 2021. 

2021 Highlights 

2021 Education  

  • We established the Education Advisory Panel (EAP). This group of experts, including patients and caregivers, helps create education for health care providers to help them understand how patients experience the disease and teach them best practices in PKD treatment. 
  • For the first time, we hosted the PKD Connect Conference (PKDCON) virtually and for free. This free educational conference brought together members of the PKD community from around the world. Stay tuned for details about next year’s conference. 

 

2021 Advocacy & Awareness 

  • Over 230 supporters on Giving Tuesday helped raise over $40,000! Your generosity was truly overwhelming. 
  • Raising nearly $800,000 for PKD research, over 1,900 participants and 300 teams joined us during our second virtual Walk for PKD. 
  • In order to protect organ donors, we helped 18 states pass the Living Donor Protections Act. Next, we’ll focus on making this federal law. 

 

2021 Research 

  • In 2021, the Foundation funded 22 researchers through $2.988 million in grants. 
  • In May 2021, PKDOC hosted an international Regulatory Summit. This brought together the pharmaceutical industry and academic settings, foundations, patient advocacy groups, individuals living with PKD, and regulatory agencies from around the world. 
  • The ADPKD Registry shared its first annual report using 2020 data. Data from the Registry was used at two international nephrology conferences. Today, more than 2,300 participants are enrolled and we helped recruited for seven clinical studies.  

This year, we also celebrate the successful conclusion of the Future Focus campaign. Without this $70 million campaign, these accomplishments above wouldn’t have been possible. By the start of 2022, we’ll have increased our research investment by nearly 300%. 

 

Looking to 2022 

In 2022, we’ll host the PKD Connect Conference for patients and their families; develop new education through the EAP; and strengthen our dedication to funding PKD research. 

This year has been full of challenges, hope, and learning. Because of you, we continued navigating the pandemic while bringing hope, education, and support resources to this community. Thank you for being our steadfast partner. 

The PKD Foundation wishes you a healthy and happy holiday season. We’ll see you in 2022! 

 

4 Comments

  1. Farshad Namvarian

    Hi
    I’m on tolvaptan for last 3 months.
    Any hope for cure soon ?
    Thanks

    Reply
    • PKD Foundation

      We have more drugs in the treatment pipeline today than ever before and are encouraged by the progress being made. You can learn more about those potential treatments here – https://pkdcure.org/what-is-pkd/latest-research/pipeline/. While we continue to fund and support research for a cure, we also encourage you to participate in clinical studies and the ADPKD Registry to help progress that research.

      Reply
  2. Debbie cummins

    Is there anything out there for us who are in 4th and 5th stage failure? Is dyalisis are only option? I prayed after watching so many people in my family suffer over the years that their would be something by now. There have been so many advances in other diseases I pray that there will be in pkd

    Reply
    • PKD Foundation

      There are two treatment options for kidney failure: dialysis (hemodialysis or peritoneal dialysis) and kidney transplantation. A preemptive kidney transplant is a transplant that takes place before the need to begin dialysis. While it is possible to receive a transplant prior to beginning dialysis, it does take planning. It is important to begin conversations with your nephrologist as early as possible to prepare for the treatment option best for you.
      Learn more about kidney transplant here: https://pkdcure.org/living-with-pkd/transplant/pre-transplant-preparation/

      The PKD Foundation offers a peer mentoring program, and we have mentors that have had a kidney transplant. If you would like to learn more about peer mentoring or if you have additional questions, please email pkdconnect@pkdcure.org.

      Reply

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