Champions of EHE

Our vision at The EHE Foundation is to live in a world where EHE is easily diagnosed and treatable. The support of our community directly impacts every single person diagnosed with EHE. Patients, donors, doctors and researchers help us make that vision a reality. ⁠

During our Giving Tuesday 2022 campaign, we featured these “Champions of EHE” to show our gratitude for their sacrifice, generosity and dedication. Each one of them has demonstrated ongoing compassion for our mission and for those affected by this rare, one-in-a-million cancer.

Ajay Pobbati, PhD, Researcher

Ajay Pobbati, PhD, is a passionate researcher at the Cleveland Clinic Lerner Research Institute investigating the Hippo pathway and potential therapeutic targeting strategies. We are excited to have awarded Ajay a 2022 EHE Research Grant, where he aims to identify an FDA-approved drug for EHE treatment.

Outside the lab, Ajay is an energetic father who enjoys traveling, reading, and tasting various types of cuisine and cocktails. We are grateful for Ajay’s talents and contributions to the EHE community – he is a true EHE champion.⁠

Jeff Holding

Jeff Holding, Donor

The support of generous donors like Jeff Holding directly impacts every single person diagnosed with EHE and help us make that vision a reality. ⁠

“We are steadfast supporters of the EHE cause as having it hit so close to home made us first aware of this horrible disease. Yet, because it is so rare, very little is known about it, thus making it imperative that we support the Foundation’s goal to learn more about this cancer, how to battle against it, and work toward finding the eventual cure. We hope our involvement will inspire others to help.” -Jeff Holding⁠

Aimee Liebert

Aimee Liebert, Patient

Aimee Liebert is a powerful advocate who was diagnosed in July 2022. She has allowed EHE to make a positive impact on her life.⁠

“Cancer is very silent to others, but very loud for the individual who is diagnosed. Most people look at me like I am a normal, healthy person, and l know question “Is she really sick?!” You can’t see my scar or my constant pains, worry, and stress.⁠

EHE has made me more aware and positive towards people and life in general. I try to be more of a DOER now, only because so many people asked me at my initial diagnosis how they can help, which is a very loaded question. It’s hard to ask for help when being diagnosed is so fresh and a major shock. I now just DO for others, maybe it’s as simple as a smile to a stranger, paying for a meal for someone, dropping kindness off, or just doing my best to see things in a positive perspective, which at times I have to remind myself! I want to show my kids and others that challenges in life can make you stronger and a better person. Notice others, pay attention, ask questions and listen, be selfless, and be kind.⁠

This EHE diagnosis is a part of my life now (as there is no cure), and I chose to make it impact my life as something positive. I hope I can help empower others to fight with positivity and strength. Keep perspective in life and remember everyone has challenges in life, but how you choose to face them will make all the difference. No one can really understand and relate to your situation, so instead of being frustrated or feeling let down, know you are strong…smile and you know you’ve got this.”⁠
– Amy Liebert

John Lamar, PhD

John Lamar, PhD, Researcher

John Lamar, PhD, a passionate EHE researcher at Albany Medical College who investigates the role of the Hippo pathway in cancer progression and metastasis. John’s research is focused on identifying potential FDA-approved therapeutic targets for EHE. ⁠

We are so excited to have awarded John with a 2022 EHE Research Grant which was generously matched by private donations to fund his multi-year research. In addition to his research, he devotes time to teaching and training young investigators – developing future generations of EHE researchers. Outside the lab, John is an energetic husband and father of two who enjoys hiking, kayaking, fishing, and being outdoors. ⁠

“While there is still a lot of work to be done, the progress that has been made in the EHE field in the past few years is remarkable. I believe that if we can sustain this momentum, more effective EHE treatments are within our reach.” said John. We are grateful for John’s talents and contributions to the EHE community – he is a true EHE Champion. ⁠

Valerie Kouskoff, PhD

Valerie Kouskoff, PhD, Researcher

Valerie Kouskoff, PhD is a passionate researcher at The University of Manchester in the UK. We are so excited to have awarded Valerie a 2022 EHE Research Grant where she aims to investigate the druggability of the DNA damage response interference by TAZ-CAMTA1. Valerie has been researching EHE since 2016.

Outside the lab, Valerie is enthusiastic about gardening, reading and enjoys long walks in the Peak District with her dog, Teddy. We are grateful for her talents and contributions to the EHE community – she is a true Champion of EHE.⁠

Makenna DeMatteo

Makenna DeMatteo, Patient

Makenna is 14 years old and was diagnosed with EHE in June 2022. ⁠She shared about her EHE diagnosis, “It has changed my life by showing me that I should be grateful for the things I have in my life. Examples of those would be my family, my friends, just being able to take a breath of fresh air, being able to live my life without worrying I may get sick, or worrying people will make fun of me for something I would never wish upon anyone else.”

As an EHE Patient, Makenna’s inspirational advice to others who are diagnosed with EHE is, “Live your best life, to the fullest. Life is hard, but it is worth living. I never realized how well I had it and how amazing it was to be healthy until this tumor started forming. I realized some people have to fight for the privilege of experiencing life experiences with those they love. Be strong, and focus on what’s important, don’t let the little negative things ruin your fighting spirit!”

Amy Houston

Amy Houston, Patient

“EHE has changed every aspect of my life, and surprisingly, a lot of them, for the good. You think of a cancer diagnosis affecting the physical body, which it does. But for me, the most challenging part has been in my mind. Coming to terms with this new unwanted adjective/label, cancer patient, has been surreal. Prior to my diagnosis, I’d describe myself as an extroverted, positive, high-functioning, type A, overachiever, unselfishly giving, and tying my self-worth to crossing items off my to do list.

After my initial diagnosis, in retrospect, I was in denial. I did not want to tell anyone outside of my immediate family. I’d get the surgery and just move on with my life. I had one, small, rare tumor – this was an anomaly, just another problem to be fixed. After the first surgery, I focused all my attention on my physical health, thinking if I could find the right combination of supplements, yoga, acupuncture, plant-based diet (insert anything), I could prevent a reoccurrence and control this situation.

When the cancer came back and required another surgery, it really affected my mental state and shook my illusion of control and sense of self. It also brought up a lot of challenging feelings and unwanted emotions, I was not prepared for or equipped to deal with. Fortunately, I was referred to an amazing therapist that specializing in working with cancer patients. Having a supportive family, caring friends, and spirituality is great and a blessing, but having a therapist where you can share your unfiltered thoughts and work through very challenging (and normal) emotions is vital. For anyone that is struggling, I highly recommend getting a good therapist.

Of course, there are good days and bad days, but working with my therapist and with help from my support network, I have been able to reevaluate how I approach and prioritize my life. I’ve been able to ask for help (gasp), be honest about my feelings and ask for what I need, be more present (a work in progress), and change my self-worth value structure. I’m not sure I would be at this point without the diagnosis and my therapist.” – Amy Houston

Bridget Zito⁠

Bridget Zito, Patient

“The most difficult part of being diagnosed with EHE and living with it is how much it has changed me and my family. I have been so sick, I have lost so much weight, I barely have any energy, and I experience pain every day. My EHE is only in my liver. My family and friends have really rallied around me and I know I am not alone.” – Bridget Zito⁠

Colin Straub⁠

Colin Straub, Patient

Colin, 14 years old, was diagnosed in 2021 with this one-in-a-million cancer.

“EHE has changed my life because it has limited some of the sports and activities I can do. Before my diagnosis I had a lot of abdominal pain that impacted the sports I love, but with treatment I am able to keep playing baseball and basketball to my full potential! My doctors encourage me to stay active and play my sports. Exercise and weight training has helped me keep a positive attitude while increasing my strength and improving my performance on and off the baseball field and basketball court. It’s important me to do activities and things I enjoy and while EHE has changed my life it hasn’t stopped me, I push myself and work hard – Just Live!” – Colin Straub⁠