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!
The Pheo Para Project will have a team on site in the Denver, Colorado metro area on Sunday, 31 July 2016. We will be leading (and recording) a group discussion on NET cancer, pheos and paras, and what positive change patients would like to see going forward. We will also be recording individual patient stories.
Details are as follows:
When: 11 AM-?
Where: 12691 W. Alameda Dr.
Lakewood CO. 80228
Light refreshments will be provided. RSVPs not required, but if you can attend please consider dropping us a note on our Facebook page, or use our contact form to reach us directly, so we can ensure we have enough space, food, etc.
We look forward to seeing you there!
If you’re a pheo patient, or if you know one, you’ve probably heard a lot about catecholamines. But, do you know what they are, and how they relate to pheochromocytoma?
During last November’s Pheochromocytoma and Paraganglioma 2015 International Conference, Dr. Vitaly Kantorovich presented up-to-date information on catecholamines, and why both their levels and biochemical composition are important to identification of pheochromocytoma and the genetic mutations associated with these tumors.
The conference at which Dr. Kantorovich spoke was organized by the Pheo Para Troopers, who have this video and many others from the conference hosted on their site. The Pheo Para Troopers is the largest patient-centered organization dealing exclusively with pheochromocytoma and paraganglioma, and is a wonderful resource for patients and their families, as well as healthcare professionals.
The videos for the conference are exclusively supported by the Firefox browser.