Pandolfi18_PTEN review
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New PTEN Clinical Trial
Are you a PTEN patient living with Stage IV Cancer? You might qualify.
Message kristin@ptenfoundation.org for more information.
CLICK HERE to read about this trial.
2022 PTEN Patient Symposium-Registration is LIVE, Save the Date!
Save the date for our 2023 Patient Symposium that will be held at the Cleveland Clinic on March 27, 2023.
Presentations are uploaded to our YouTube channel. Thank you for your patience while we worked to get these uploaded. We experienced technical difficulties and system logistics.
Click below to access our 2022 patient symposium talks:
PTEN Hamartoma Tumor Syndrome Awareness Day is Oct 23
Help us Raise Awareness.
We’ve created a tool kit for our awareness day. You can share your story or the infographics, and social media language below. Please tag us @ptenfoundation on social media:
PTEN is a tumor suppressor gene. when a patient is born with a pten gene mutation they have a higher lifetime risk of developing breast, thyroid, kidney, colon, endometrial cancer and melanoma. Some patients are also affected with neurodevelopmental disorders. learn more at https://www.ptenfoundation.org #ptenawarenessday2021
Today is PTEN awareness day! Currently, there are no treatments for PTEN Hamartoma tumor syndrome. we believe awareness sets us all on a path to treatments. learn more at https://www.ptenfoundation.org #ptenawarenessday2021
Join us for Barbeque, Bingo and Beer, June 27, 2021
Join us for our annual fundraiser!
In collaboration with Pourhouse Huntsville and Bark and Barrel, we are excited to host our 2nd Annual Fundraiser.
Join us for Barbeque, Bingo, and Beer, a charity event benefiting the PTEN Hamartoma Tumor Syndrome (PHTS) Foundation. PHTS is an under-diagnosed hereditary cancer syndrome affecting women, men, and children alike. Patients with the disorder are at a high lifetime risk of developing breast, thyroid, kidney, colon, and endometrial cancer, as well as melanoma. Some of our patients are affected by developmental delay and autism. Currently, there is no cure, only prevention, and screening. Your support will help us advance programs to accelerate research and give back to families in need. We will also make a donation to Alabama Rare in honor of all who are living with rare and genetic diseases.
SIGN UP HERE!
We are excited to officially announce The Liam James Manning Memorial Fund
Liam James Manning Memorial Fund
Liam’s Fund was developed to honor the life and memory of Liam Manning. The Manning Family hopes that Liam’s Fund scholarships will assist PTEN families with needs that arise as a result of their PTEN medical diagnosis.
Liam passed away unexpectedly on March 25, 2020; Liam was John and Maria Manning’s beloved son. Liam’s joyful and gentle disposition was a light to all who knew him. He loved all of his classmates, teachers, and staff. Liam was very passionate about horseback riding, swimming, and music videos. Liam’s loving personality, easy-going nature, and pure heart were evident to all who knew him. Most of all, Liam will be remembered for his beautiful smile, kind and gentle disposition, and for making everyone around him happy.
Our first round of scholarships will be offered two weeks from Rare Disease Day, February 28, 2021, due on March 21, 2022.
Please complete the following application:
Liam's Fund
Jacob’s Story shared by his Mom
This is our PTEN journey so far…Today is PTEN hamartoma tumor syndrome awareness day. This being because it is located on chromosome 10q23.3. It is a rare medical disorder affecting 1 in 200,000 people. It is a known cause of autism, macrocephaly, and several types of cancers(ex..thyroid, melanoma, kidney, colon, breast(yes boys can get breast cancer), prostate, etc just some of the concerns). Since Jacob’s diagnosis of autism at 33 months, I’ve learned never to judge a book by its cover; Jacob proves that daily. You didn’t know us personally, you would have a hard time believing most of his diagnoses because he tries his best not to let you know what he goes through daily. We never know where he is taking us on his journeys, but we believe we have the best tour guide out there. He has macrocephaly (diagnosed at 1-month-old) he has autism (diagnosed at 33 months old), he has this PTEN gene (diagnosed at 7.5 yrs old). He has to go thru prescreening yearly for this disorder as the cancers can be quite tricky. He goes to occupational and speech therapy twice a week(currently virtually). He has countless specialists on top of a fantastic pediatrician. He has autism, macrocephaly, café-au-lait spots, GI issues, and low immune system all because of this gene. So with this being said, let’s spread awareness and help patients like Jacob.#PTEN #PTENawarenessday @ptenfoundation -Kelly