Our Team

Why do you advocate?

1. I advocate to be a voice for my son who needs healing.
2. I advocate so all the PFIC warriors have hope that someone is fighting for them.
3. I advocate so this rare disease is not rare in the minds of people.
4. I advocate so a cure is found.

What is your role at PFIC Network?

I am the President of the PFIC Network and I sit on  the Advisory Board 

Where are you located?

I live in Edmonton, Alberta, Canada

What do you hope to accomplish?

1. I want to help in establishing PFIC Canada.
2. I want to contribute in helping the PFIC Network maximize their potential so they can serve families in the best way possible.
3. Create awareness worldwide.
4. Find a cure.

How are you connected to PFIC?

I am a parent, a co-founder, and current Vice-President

Why do you advocate?

• I advocate because no family should have to fight the battle of PFIC alone.
• I advocate because our children deserve better options and outcomes.
• I advocate because this disease has had a tremendous impact on my family and I want others to know why PFIC deserves attention and science and policy and change.
• I advocate because I want my children to have a future where PFIC doesn’t impact their lives.

What is your role at PFIC Network?

I helped to co-found the network, after connecting to Melanie and Emily through social media. We have worked together to turn what started as a website, into a fully operational non-profit organization dedicated to making PFIC a household name by increasing advocacy and research, and helping families know they are not alone.

Where are you located?

The Eastern Shore of Maryland, USA

What do you hope to accomplish?

We have already accomplished so much! It’s hard to imagine what the future will hold for our fast-growing network.  I hope we continue to reach more families, more doctors, more centers, who have all been impacted by or work with PFIC.  I want to continue to work with industry to bring better treatment options for PFIC patients so that transplant becomes a thing of the past for our families.  It is my hope that we continue to support families who need it most and to raise awareness that though we are rare, we are mighty!

How are you connected to PFIC?

I became connected to PFIC when my best friend’s daughter was diagnosed with PFIC 2 in 2012.

Why do you advocate?

I advocate because I believe it is important for patients of any disease to have access to information and treatment options. I have seen first hand the frustration of a family living with a rare disease who was lacking information and treatment options because the disease was so rare. I’m also a registered nurse and have witnessed how powerless patients and families can feel when trying to understand and cope with a disease. My goal in working with the PFIC Network is to help PFIC families feel more informed and less alone.

What is your role in the network?

I am the board Treasurer.

Where are you located?

I am located in Lexington, Kentucky.

What you hope to accomplish?

I hope to help the PFIC Network continue to grow and provide resources for families affected by PFIC. I am also currently the only member of the Board that is not a PFIC parent and I have a background in healthcare, so I hope that I am able to bring a unique outside perspective during my time serving on the Board of Directors.

PFIC Mother & Advocate

How are you connected to PFIC?

My son Cade, 16 and a junior in high school. He was diagnosed with PFIC 2 at 6 months old. After exhausting medical therapies and surgical interventions, (including having a PEBD for 15 years), Cade was listed for liver transplant in July 2020 and recieved his gift of life on September 23, 2020.

Why do you advocate?

As a a rare disease, PFIC requires voices to spread awareness and push for a cure. After 16 years of PFIC-related experiences under my belt as a caregiver, I feel like I can best serve the network and the mission by connecting with other families, sharing my experiences and doing my part to move the needle towards an eventual cure.  In 2004, it was extremely difficult to find anyone with PFIC and even harder to find information online.  An organization like this –with the resources and community it provides— would have been a dream for my family. I am incredibly proud to be a part of its collective voice.

What is your role in the network?

I joined the Board of Directors in January 2021. Prior to that I was a member of the Parent Advisory Board.

Where are you located?

In suburban Philadelphia, Pennsylvania. Cade has been a patient at Children’s Hospital of Philadelphia (CHOP) since 4 months old.

What do you hope to accomplish?

Assist the momentum of the network by providing input and ideas at a leadership level, while continuing to foster personal, family connections that makes this network so very important.

Welcome to the PFIC Advocacy & Resource Network.

My name is Charmaine Gravener. I grew up and currently live in Mount Laurel, NJ.   My children Tyler (17) and Charmaine (14) both are diagnosed with PFIC type 2.   When we started our journey 18 years ago there was very little information about PFIC and even less people to talk to.

Finding other PFIC parents was incredibly rare and each doctor was using a different method for treatment.  As the children have grown so has social networking and the ability to find people around the world who are living with this condition.  I want to be a part of making those earliest and scariest of days easier for other parents and patients.  I hope that I can have a small hand in the education of both patients and physicians to make the day to day better for the people battling PFIC until ultimately a cure becomes available.

How are you connected to PFIC?

 My 10 year old daughter has PFIC 2. She was diagnosed in 2012, and had a liver transplant in 2017. She is doing well today.

What is your role at PFIC Network?

Alongside Melanie and Tara, I co-founded the group. I started out as President, but recently have shifted into the Executive Director role. I have given up my career as a bedside nurse, for now, and am committed to serving this role as long as the PFIC Network will have me.

Where are you located?

Kentucky, USA. In a rural area called the Red River Gorge.

What you hope to accomplish?

I hope to provide resources, support and solutions for ALL patients and families. Also I hope to bring the patient voice to Research and Advocacy opportunities. I hope to show the world WHY they should learn about PFIC, and help to find hope in a disease riddled with uncertainty. I hope to be able to provide an answer for every patient, every question, every time.

What skills do you bring to the PFIC Network?

My Background is in Nursing, so providing health education to patients is a passion and a built in skillset. Also, Communicating with medical providers and facilitating conversations between patients and providers is a skill that I took away from my nursing career and apply here. On a completely different note, I enjoyed learning to use graphic design tools as a hobby which has proven useful in many projects.

What would you sing at Karaoke Night?

Build Me Up Buttercup – The Foundations

How are you connected to PFIC?

My 11 year old daughter was diagnosed with PFIC2. I also have a second daughter who has had genetic testing done and found out that she is also a carrier of PFIC.

When I look back to 11 years ago, I remember bringing my brand new (first baby) to her pediatrician when she was 5 months old because she was covered in bruises (a very uncomfortable situation for both myself and her doctor). That night I got a call from him asking us to come back to his office in the morning. We were immediately sent out of town to the children’s hospital because her blood was not clotting. That’s where we found out there was something very wrong.

After a few misdiagnosis we found out the week of her second birthday she had PFIC thanks to genetic testing. It was the worst news I had ever received. Her specialist advised us that is was incredibly rare and it will lead to liver failure if she does not receive a transplant at some point in her childhood. We were also his first PFIC patient so he was learning too. He told me not to google PFIC, because it would scare me. Naturally I did not listen to him, and yes it was awful. I was told I would never meet anyone with PFIC.

I eventually found a support group on Facebook years later. A few years after that, someone (Emily) asked if anyone would be interested in a family conference. I jumped at the opportunity and in June 2019 my entire family got to meet 22 other PFIC families, and that changed our lives in a wonderful way. The second I got home I emailed Emily to tell her I wanted to be on the PFIC board of directors.

Why do you advocate?

I advocate in hopes that no other family has to go through a PFIC diagnosis alone, to have their questions answered, and to have a positive outlook on the future.  I advocate to get our PFIC community heard so that one day we have more treatment options available.

#stoptheitch

What is your role at PFIC Network?

I have been on the Board of Directors since July 2019 and just recently decided to take on the role Executive Assistant.

Where are you located?

I am located in St Catharines, Ontario, Canada (15 mins from Niagara Falls)

What do you hope to accomplish?

I want to make sure all PFIC patients have their voices heard. The world needs to know what PFIC is and the urgency for more effective treatments. No child should have to live with the horrible effects from PFIC. I hope to provide answers and support for newly diagnosed patients, something that was never available for my family 11 years ago.

What skills do you bring to the Network?

Teamwork, Dedication, Flexibility, Creativity & Passion for my work

What would you sing at karaoke night?

Cyndi Lauper… Girls just want to have fun

How are you connected to PFIC?

I’m deeply committed to healthcare that is patient -centered in its outcomes and impacts.

What is your role at PFIC Network?

Director of Development

Where are you located?

Sunny (sometimes) Virginia Beach, VA

What do you hope to accomplish?

I hope to broaden our reach by deepening understanding of our mission; to expand the PFIC Network by reaching more patients and families; to create new partnerships for more research, advocacy and support services for the patients and families we serve.

What skills do you bring to the network ?

I’m a passionate storyteller, creative thinker, problem solver, relationship builder, data consumer, and people connector. And I use all of these to drive investments in the work we’re doing on behalf of the PFIC community!

What would you sing at Karaoke night?

“Build me up, Buttercup” by the Foundations with my family, it’s a long-standing tradition from a family vacation more than 20 years ago!

How are you connected to PFIC?

I have known Cedar (Emily’s daughter) since when she was born, and witnessed the impact PFIC has had on her and her family’s lives. More recently, I have also met several other PFIC children and parents.

What is your role at PFIC Network?

I am responsible for PFIC Network’s research program which includes overseeing the patient registry data collection and data analysis. I am excited that we are planning to start a science blog on the PFIC Network website that will feature summaries of recent scientific publications that are relevant to the PFIC community

Where are you located?

Mostly in Rogers, KY.

What do you hope to accomplish?

I hope to support and strengthen the relationship between the PFIC community and the scientific research community. Understanding the potential, accomplishments, and limitations of scientific research on the one hand side, and the multifaceted impact of PFIC diseases on patients and their caretakers on the other can provide a powerful basis for research endeavors that are of mutual interest.

What skills do you bring to the network?

I am a Professor Emerita at the University of Notre Dame. My expertise is in behavioral statistics/quantitative psychology. Basically, this means that I have expertise in analyzing different types of data concerning human behavior as well as building and testing measurement tools such as questionnaires. Most of my applied research used to be in psychiatric genetics.

What would you sing at karaoke night?

I would stay really quiet.

How are you connected to PFIC?

My friend’s daughter has PFIC

What is your role at PFIC Network?

Director of Technology

Where are you located?

Wherever there is an internet connection

What do you hope to accomplish?

I hope that by ensuring PFIC Networks web entities are easy to use and are always available it will help anyone looking for answers about PFIC.  Documenting security protocols and keeping our patient information, for research, safe and secure is of the highest importance for me.

What skills do you bring to the Network?

I am a huge nerd, which if you’re in a technology role is a pretty good thing. I have over ten years’ experience in technology-based roles and have been moonlighting as a full stack developer as well. While mostly working for big brands at advertising agencies I picked up a lot of knowledge around user experience and brand identity which I hope to apply to the PFIC Network. 

What would you sing at karaoke night?

I would not sing, just stand in the back hoping to leave soon. I have sung once because it was a private room karaoke with only a few close friends. My song: The Drifters – Up on the Roof

How are you connected to PFIC?

I am a friend of a PFIC patient and parent.

What is your role at PFIC Network?

I am responsible for our international Advocacy and Outreach Program, which includes organizing educational and assessment efforts such as our recent Project REACH in India and Pakistan. I am also PI of the PFIC Network Patient Registry (PNPR). The PNPR collects patient reported outcomes and focuses on how patients and caretakers experience PFIC or PFIC related diseases.

Where are you located?

I am located in Red River Gorge, Kentucky

What do you hope to accomplish?

I hope to take some of the burden off of PFIC families by making it as easy as possible to organize effectively as a global community.

What skills do you bring to the Network?

Extremely passionate and motivated, prior non-profit and communications experience,  team player, adaptability and creativity.

What would you sing at karaoke night?

Africa by Toto

How are you connected to PFIC?

A dear friend has a daughter with PFIC

What is your role at PFIC Network?

I primarily work in administration and operations and try to make sure everything is running smoothly behind the scenes. I also contribute website content and help with graphic design.

Where are you located?

New River Gorge, in Fayetteville, West Virginia

What do you hope to accomplish?

I’d like to be a part of the PFIC Network making patient-centered research a reality.

What skills do you bring to PFIC Network?

A love of spreadsheets, making to-do lists and solving puzzles.

What would you sing at karaoke night?

No Scrubs by TLC