Pandolfi18_PTEN review
Home Blog
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 15, 2021.
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
COVID-19 Resources and Information
We are here for you!
In an effort to keep you informed we have compiled a listing of COVID-19 Resource links. We will continue to update these, please email andrea@ptenfoundation.org if you have a resource you would like added.
We Love this resource shared by our friends at the PMS Foundation:
Explaining coronavirus to children and adults, offered in multiple languages.
CLICK HERE TO ACCESS RESOURCE LIST
[embeddoc url=”https://ptenfoundation.org/wp-content/uploads/2020/03/COVID-Resources.docx” download=”all” viewer=”microsoft”]
4/7/2020 Webinar Link Here:
After registering, you will receive a confirmation email containing information about joining the meeting.
To access the 4/7/2020 PTEN/COVID19 Webinar follow the link below. Note: The information included in the webinar is offered as general advice and is not to be construed as individual medical advice. Always consult your physician with individual medical concerns.
Thank you, Dr. Eng and Dr. Uhlig for sharing your time to offer guidance to our community.
ACCESS THE 4/7/2020 WEBINAR RECORDING BY CLICKING HERE
PHTS/COVID-19 General Guidance Document
PTEN Hamartoma Tumor Syndrome Covid
APPLY FOR OUR COVID19 PTEN FAMILY NEED SCHOLARSHIP. (click below)
PTEN/COVID19 SCHOLARSHIP (based on need)
PAST WEBINAR
ACCESS THE 3/26/20 WEBINAR BY CLICKING HERE:
The webinar was cut a little short, our apologies.
The information provided in the 3/26 webinar is general guidance and not to be construed as individual medical advice, always consult your physician with medical questions.
