Author: The Pheo Para Project

An ongoing video project, documenting patient stories, as told by patients and their families. Look for our steam on YouTube

Call for Video Submissions!

We’re helping our friends at the Pheo Para Alliance gather video submissions to be used during Pheo Para Awareness Week, which takes place during the last full week of August (August 23-27!). Your video will help create a compilation video highlighting the theme “You are Not Alone.” Patients, caregivers/family/allies and healthcare providers are all encouraged…

COVID-19 and NETs

Though the #COVID19 ( #Coronavirus ) pandemic affects us all, persons with chronic illnesses like cancer may be more vulnerable to serious complications from any illness. Josh Mailman:NorCal CarciNETs sat down with Dr. Pamela Kunz to answer questions from #NETs patients about the disease, and its implications for those with neuroendocrine cancer, which includes #pheochromocytoma and #paraganglioma. Please take a…

Pheo Para Project Founder Nominated

Our founder and director, Aimee Powell, has been nominated for WeGo Health’s Patient Leader Award for her work with the pheochromocytoma/paraganglioma patient community. Aimee would like to thank the person who nominated her, the patients and caregivers with whom she works every day, and WeGo Health for this recognition and the opportunity to bring more…

Did you miss it?

If you missed the special Rare Disease Day episode of Lifetime’s “The Balancing Act” which featured a segment on pheochromocytoma, never fear: The show’s YouTube channel contains the complete piece! While you’re there, head over to our channel to see our NET  Cancer Day PSAs, and view other patient stories. Want to share your experience…

SDHx Tumor Tissue Needed

The SDH-Deficient Cancer Research Advocates is supporting researchers by connecting them with patients willing to donate tumor tissue. As SDH-RA co-founder Becky Owens noted, “Sending tissue to researchers is of vital importance for development of cell lines and mouse models for research.” Anyone having surgery for SDH-deficient GIST tumors, or  pheochromocytoma/paraganglioma tumors regardless of mutation is…

Pheochromocytoma: The Last Episode

Filmmaker Attiya Khan contacted the Pheo Para Alliance just before Rare Disease Day last year to talk about her diagnosis of pheochromocytoma. Naturally, we asked her if she’d consider participating in our annual NET Cancer Day PSA. To our great delight, she said yes! Attiya’s video made a great impression on World NET Cancer Day 2017, striking…

Kari’s Story

Each year, we like to post the raw footage we receive from our participants along with the PSA we produce. Kari’s unedited interview with her husband is now available for viewing. We’d like to thank Kari once again for participating this year, and for her help publicizing the finished video. Be sure to check this video’s…

PSA: NET Cancer Day 2016

Our PSA is out! Though its release was delayed a few days due to illness, our NET Cancer Day PSA is ready for viewing. This year, Kari Dahl’s story is featured as we join in the global #LetsTalkAboutNETs campaign. Please take a moment to view and share the video, and check back on Thursday, November…