Together, the US, UK, and Australia EHE foundations team up to strengthen the force against EHE. This group provides a quarterly update, which is led by the UK and includes research news, patient and fundraising stories, and much more! Click here to view the most recent edition of our online EHE newsletter, The Pledge.
The EHE Foundation Advisory Board Annual Meeting
The EHE Foundation’s Advisory (Ad) Board met with the Foundation’s research team in June for their annual meeting. The Ad Board is composed of nine renowned clinicians and researchers who generously give their time and talents to advise The Foundation, in addition to the countless hours they spend during their ‘day jobs’ with patients, research projects, and reports. Members include Dr. Silvia Stacchiotti, Dr. Scott Okuno, Dr. Denise Adams, Dr. Vinod Ravi, Dr. Brian Rubin, Dr. Breelyn Wilky, Dr. Cameron Trenor, Dr. Jonathan Trent, and Dr. Bill Tap.
Denise Robinson, EHE Foundation Director of Research, chaired the meeting which included the Ad Board and the Foundation’s research committee members. The agenda focused on reviewing Foundation’s growth and strategic planning, the patient-led research initiatives of highest priority including the EHE Biobank and EHE Global Patient Registry (in development). Additionally, the group discussed other strategic projects including a prospective observational study, and the 2022 Research Grants Program. Significant time was spent discussing the importance of the biobank and registry participation among EHE patients, which are critical to learning more about EHE biology, potential treatments, and patients’ experiences.
Denise commented that “this meeting of these great minds is essential to keeping the Foundation focused on moving our mission forward and grounded in our pursuit of better treatments and a cure for EHE. We are eternally grateful for the time and talents the Ad Board gives to the EHE community. They are awesome champions of our mission!” Jenni Kovach, President of The EHE Foundation and also an EHE patient, attended the meeting and was thrilled to welcome everyone while reiterating “we need you…as a patient, and the Foundation needs you and we are so thankful that you choose to be here today.”
To learn more about The EHE Foundation’s Advisory Board, click here.
The Pledge: Edition 28, Q1 – Jan-Mar, 2022
Together, the US, UK, and Australia EHE foundations team up to strengthen the force against EHE. This group provides a quarterly update, which is led by the UK and includes research news, patient and fundraising stories, and much more! Click here to view the most recent edition of our online EHE newsletter, The Pledge.
Carmela Valdivieso
What do you want others to know about EHE?
“Getting to know other cases through the EHE Foundation, I realized that, even though all cases are very different, uncertainty is something we all share. I have my hopes on the community built around EHE, where I no longer feel alone and trust that there will soon be a cure. I try to live my life one day at a time. My daughters give me the strength I need to feel that there is much more life ahead of me. I would like to say to all of you: don’t be passive patients. Be active protagonists in the search for sympathetic doctors who make you feel confident and sure that they will be able to control, improve and overcome this disease. And to remind you that the EHE Foundation will support you always. You are not alone anymore.”
~ Carmela Valdivieso
Linda Beaulieu
What do you want others to know about EHE?
“EHE changed how I see life. I received the diagnosis of EHE one year ago, lung removed and a heart bypass. It was gone! But then it returned this Christmas on my trachea. I am now on medication and hoping that the next scan will be stable. It is difficult, and I have had many ‘why me’ moments, but it has also changed me. I now appreciate every day, people and every opportunity even more. I am trying to not let it consume and define me. I truly live by the motto ‘Just live’.The picture is me in a t-shirt I had made for the Garth Brooks concert I am going to this month. The song ‘The Dance’ is about living life.”
~ Linda Beaulieu
Tonja Pektas
What do you want others to know about EHE?
“The mental battle with EHE is monumental! The watching and waiting and the not knowing what it’s going to do in my body! That new pain in my ribs….could it be EHE? That weird reaction I had to something…could that be caused by EHE? I have one more week until I get scanned again….what will they find? Is it growing faster? And the list goes on and on! I’m learning to live in the moment and not dwell on the future, but that is hard. On the positive side, EHE has taught me that every day, every moment is precious! Life is precious! Embrace today and soak it all up! I’m not great at it, but I’m getting better. While I still have pain every day, all day, and I don’t want to give this dreadful disease credit for anything, ironically, I have to say thank you EHE for teaching me that every day is full of blessings and immeasurable goodness…the sound of my son’s voice saying “good morning, mom!”, a goodnight kiss from my husband, a call from my college student to say hello, feeling the warm breeze on my face on a sunny day, count it all as blessing because life is sweet and tomorrow isn’t promised! Just Live!!!”
~ Tonja Pektas