Letter from our President
I was diagnosed with a PTEN mutation in 2011 after surviving thyroid cancer. Like many of you, it was a lucky diagnostic journey that led to my diagnosis. While there were a few existing Facebook support communities, I realized there was no formal organization to support our patient community and thus my decision to form the PTEN Hamartoma Tumor Syndrome Foundation. Our mission is to support you and researchers who are working to find a treatment for PTEN Syndromes. We do this by making sure our community is aware of the available research, raising PHTS awareness, and by developing programming that will provide long-term benefit to our patients.
We believe the number one need for our community is to gain a proper diagnosis which puts every patient on the path to a treatment and our priority is that your voice is heard through advocacy, your needs are met, and you have access to the very best care.
We have had great success in a short period of time including the following:
- We offered more than $6000 in patient scholarships to our community to help cover medical and travel expenses.
- We published the first of its kind patient friendly brochure and screening guideline leaflet for our patients to take into physician visits.
- We hosted the first ever International PTEN Patient Symposium with more than 70 patients, and researchers present.
- We are currently working to publish criteria for clinical centers of excellence with support from our external scientific advisory board. The goal is to make sure that clinical centers work to provide you the very best care.
- In collaboration with PTEN Italia, we recently launched the first of its kind international patient advisory council to connect patients who will work together to advance beneficial programming.
- We are working with PTEN Italia and support from our scientific advisors to develop a patient powered registry. The goal of our patient powered registry is to propel research forward with input from you, and we will share de-identified aggregate data and reports back with you. Our patients who are living with a PTEN mutation understand their disease better than anyone.
- In collaboration with PTEN Italia, we will host our Second Annual PTEN Patient Symposium in Cleveland, Ohio April 7-8, 2019.
It is an honor to serve you. Please feel free to reach out by email anytime. The PTEN Hamartoma Tumor Syndrome Foundation is your foundation, and we want to hear from you.