Our mission is to connect the Pyruvate Kinase Deficiency community through treatment support, increased social awareness, and advocacy.
The Thrive with Pyruvate Kinase Deficiency Organization was created to fill a gap within the PK deficiency community to unite patients and caregivers of various backgrounds in an effort to alleviate feelings of isolation and to empower families with information to customize their health journey.
There are many reputable resources about PK deficiency, and we intend to promote their good work. At the same time, advancements in hematological research have brought about better tools and guidelines for managing patient’s hemoglobin, iron overload, and related symptoms. New treatment options are available or on their way including a medication that activates the pyruvate kinase enzyme and gene therapy that may serve as a cure.
While promising, we recognize these discoveries will increase patient options for treatment. Our goal is to provide support and information by helping patients and caregivers become stronger advocates with their healthcare team.
We will do this by:
- Connecting the PKD community with treatment information, research, and support
- Increasing awareness of PK deficiency by using social media, with the goal of finding more people touched by PK deficiency
- Providing community informed advocacy of PK deficiency to key stakeholders
Please join us on our journey to connect an already growing community.
Board of Directors
Becky Herzog / Patient & Caregiver Outreach Director and Record Keeper,
I’m a Montanan mom to sweet caring and strong 7 year old girl. She was diagnosed with PKD at 3 months old. Her PKD is on the more severe side. She is transfused every 3 weeks. I have had a great working relationship with my daughter’s medical team. I was a speaker on behalf of my daughter at the FDA, PKD Patient-Focused Drug Development Meeting in 2019, and am in multiple groups advocating for my daughter’s young voice. My main goal is to help new caregivers understand and communicate for their littles and educate people on PKD.
Carl Lander / International Collaboration Director
I am UK based and having being diagnosed with PK deficiency at the age of four I have experienced a wide range of interventions over the years. I am passionate about advocating for the lived experience of people with PK deficiency and their carers. I am looking to help deliver the most effective use of both funding and knowledge to produce resources to help better understand the disease process and the impacts it has upon us all. I am really excited to take this first step in our international collaboration plans
Jessica Keller/ Vice President
I’m a mom of three children from New Hampshire. My oldest child has PKD; my other two are both carriers of PKD. I am a member of the original PKD group on Yahoo and a founding member of the PKD Facebook group. I worked with the Facebook group members several years ago to create the original PK deficiency ribbon. I believe the knowledge we have together about our own successes and failures will help us all to better determine our PKD journeys and to develop care plans that help us reach our management goals.
Tamara Schryver / President
I’m a Mom, Nutrition Scientist, and documentary junkie who also happens to have PK deficiency. I was diagnosed at age 6 and live the full gambit of the disease. My goal is to help people affected by PK deficiency to find each other and eventually connect in person to alleviate the feeling of isolation. I believe everyone deserves personalized, up-to-date treatment no matter their social status or geography.
Tess Johnsen / Co-founder
I’m a Minnesotan with uncommonly mild PKD here to use my energy to continue the work of connecting our rare community online. My education and professional experience has been focused on communications, social sciences, creative small business, and homemaking. I am artistic, culturally inclusive, an LGBTQIA+ Ally, and a cat mom.
People with Pyruvate Kinase Deficiency experience a wide range of symptoms and health complications that often aren’t visible or expected. For this reason, it can be difficult to feel normal or validated. With every individual having their own unique story, we find it beneficial to share some of those stories so people don’t feel so isolated and alone.
Click on the Everyone Has A Story button above to listen to one of our stories, via BBC StoryWorks and let us know if you would like to share your own experiences with the community.