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 with various backgrounds to share, in confidentiality, about each other’s health history and to alleviate the isolation of living with a rare disease. This communication helps to console, empower, and customize each person’s treatment journey and lived experience.
There are many reputable resources and websites about PK deficiency, and we intend to promote their good work. At the same time, advancements in health technology and increased acceptance of alternative medicine have brought about better tools and guidelines for managing patient’s hemoglobin, iron overload, and symptoms. Several future options are underway, including a medication that activates the pyruvate kinase enzyme activity and gene therapy that may serve as a cure.
While promising, we recognize these discoveries will increase patient options for treatment and intend to serve as an objective educator and supporter of informed decision making. Our goal is to provide support by helping patients and caregivers become stronger advocates with their healthcare team, given all the treatment options and related costs.
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 blooming community with the resources that will support the needs of everyone with Pyruvate Kinase Deficiency.
Board of Directors
Jason Blackman / Record Keeper
I am from New Albany, IN. I am forty-nine years old but feel like I’m forty-eight. I have a wonderful son, Mason, and wife that is way too good for me named Sasha. I was originally diagnosed with Congenital Dyserythropoietic Anemia (CDA) at birth. Three years ago, I was genetically tested and confirmed to have PK Deficiency. I have been transfusion dependent my entire life and have been on the mitipivat trial for three years. I was an athlete in my youth specializing in baseball and was a poker dealer but was forced to retire early because of chronic anemia. I am a wizard in Lego-building and specialize in large builds. My goal is to make the future better for upcoming kids with PKD.
Becky Herzog / Patient & Caregiver Outreach Director,
I’m a Montanan mom to sweet caring and strong 6 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.
Conor Stoebner / Treasurer
I’m a Minnesota native with a background in accounting and finance. Although I don’t have PKD myself, my aunt, Tamara Schryver, who does have PKD, asked me to lend a hand to the organization. I believe strongly in the mission of Thrive with PKD to inform and advocate for those with PKD, and it is my pleasure to serve as its treasurer.
Jill Holterhaus / Brand Director
I am a Best Friend, Supporter, and Ally. I am part of this organization because I want to support my best friend and her cause, through dedicating my creative superpowers in any way possible. I hope to bring graphic design, branding, and endless creative energy to the PKD table in anyway needed.
Sara Fisher/ Young Families Liaison
I’m a mom of one, to a son that was diagnosed with PKD shortly after birth. At the time we were completely lost with no one to really reach out too. After awhile I found this great group of people that have taught me so much. He is currently transfusion dependent every 5 weeks. My main goal is to be a voice for my young son, as well as helping other families newly diagnosed to help navigate through those first few difficult years learning how to adjust just like we did.
Tara Paluilis / Social Media Director
I’m a mama of 2 kiddos! A 10 year old son who is becoming a soccer star and 6 year old daughter who is all sorts of strong, sassy and sweet! My daughter was diagnosed at 10 months old with Pyruvate Kinase Deficiency. She has a “princess port” and transfused every 4-6 weeks. I am passionate about helping to advocate and spread awareness about PKD while helping to build the community!
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.