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 attention to pheochromocytoma and paraganglioma.
Has Aimee had a positive impact on you, either personally or via the Pheo Para Project? Follow the link below to add your testimonial on her behalf, and help showcase pheo/para and the hard work Aimee and other PPGL advocates put in every day:
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 as a pheo/para survivor with others? Make a video and contact us — we’re always accepting submissions, and your story might be featured in our next PSA!
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 encouraged to contact Ms. Owens via email for assistance in making arrangements for tumor tissue to be saved and transported.
Today we continue our mission to highlight patient stories by sharing Michelle Whipple Williams’s amazing blog. Michelle is a participant in a protocol at the National Institutes of Health, and writes beautifully descriptive pieces about her time there, as well as her experiences as a patient with a rare disease.
Visit Michelle’s blog, That I Would Be Free…
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 a chord not just among those with pheo/para, but among many throughout the greater NET Cancer community. While we wait to hear whether a much-anticipated longer movie materializes, we’d like to invite out visitors to take another look at her brave and unflinching short film, Pheochromocytoma: The Last Episode
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 summary information for a link to Kari’s blog detailing her journey after she received her cancer diagnosis.
And don’t forget to participate in the conversation happening on social media tomorrow.
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 10 — NET Cancer Day 2016 — for Kari’s unedited (and moving) interview with her husband. If you’d like to share your story, we are always accepting submissions, and already looking forward to Rare Disease Awareness Day 2017. In addition, the Pheo Para Troopers are still seeking coffee chat hosts, and have #LetsTalkAboutNETs cups to help you get the conversation started in your community.
Finally, don’t forget that everyone can join the global conversation now. Just look for #LetsTalkAboutNETs on social media, or use it in your posts/tweets, and jump in!