Paraganglioma – The Pheo Para Project

Six-Month Challenge to Change the World

Our founder has issued a challenge to pheo/para patients and allies across the United States, and around the world. She writes

“As many of you know, I founded the Pheo Para Project to raise awareness after the death of my brother John. Our motto is “Building hope, one story at a time…” I believe the positive changes we see in the world, whether large or small, are the result of an accumulation of small actions taken every day by ordinary people hoping to move the world in an extraordinary direction…”

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 to take part! Here’s what we’re looking for:

Record a video, using the following script:

“My name is (name) from (city, state, country), and I am a (patient/caregiver/healthcare provider)”

“A pheo or para diagnosis often comes with feelings of loneliness and isolation, but together we can create an international community of support to empower and inspire everyone with pheo or para. You may be rare, but you are not alone.”

Say the words “paraganglioma” and “pheochromocytoma” by themselves.

Say the phrase, “I am pheo para fearless.”

Portions of your video will be edited and used, so don’t worry about making it perfect, but please make sure you have good lighting, can be heard clearly and hold your phone sideways, in horizontal/landscape mode. Upload videos to dropbox.com or Google Drive and share with info@pheopara.org by JULY 20.

By participating, you agree to allow Pheo Para Alliance to use your likeness and edit your video for promotional materials.

All languages welcome!

Featured This Week: Catecholamines

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.

Featured This Week: Modern Imaging

There has been growing discussion regarding the most effective way to image neuroendocrine tumors, including pheos and paras, which culminated with an announcement on June 1st that the United States Food and Drug Administration (FDA) has approved the use of Netspot. Netspot is a kit designed to deliver a single dose of radioactive diagnostic agent Ga-68 DOTA-TATE to patients via injection during positron emission tomography (PET) imaging.

Dr. Jorge Carasquillo spoke to attendees at the Pheochromocytoma and Paraganglioma 2015 International Conference about imaging techniques in his presentation on Modern Imaging. Dr. Carasquillo’s illuminating talk presented ample evidence for the superiority of PET imaging used in conjunction with Ga-68 DOTA-compounds when looking for pheochromocytomas and paragangliomas.

We’d like to append a special note to radiologists and patients reading this: Because of the great value of these scans to patients, we are currently in the process of compiling a global list of facilities which offer Ga-68 DOTA PET imaging. We are very interested in hearing from providers who offer them, and also from patients who have received them. Please contact us with the details, and be sure to leave information on how we can reach you for more information.

This video is hosted by the Pheo Para Troopers, who also organized the conference from which it was taken. The Pheo Para Troopers is the largest patient-centered organization dealing exclusively with pheochromocytoma and paraganglioma, and is a wonderful resource for both patients and healthcare professionals.

The videos for the conference are exclusively supported by the Firefox browser.

Featured This Week: What Every Primary Doctor Needs to Know About Pheochromocytoma and Paraganglioma

If we had to list posts we’d like to see spread far and wide, Dr. Ruban Dhaliwal’s November presentation at the Pheochromocytoma and Paraganglioma 2015 International Conference would be one of our top picks. Primary care physicians are usually the first to encounter the symptoms of these tumors, and What Every Primary Doctor Needs to Know About Pheochromocytoma and Paraganglioma provides good basic information on what to look for, how to properly conduct testing, and when to pull in colleagues from specialized areas of practice.

As with all the links we will be posting, we encourage any patients reading this to share with their doctors. If you’re a medical professional, we hope that you will take the time to listen to the presentations and view the slides.

Please note: the videos for the conference are supported by the Firefox browser.

Thanks to the Pheo Para Troopers for their kind permission to re-post links to their videos from the conference.

Featured This Week: Pediatric Management of Pheochromocytoma

Since the NIH’s recent study linking pediatric pheochromocytoma to ADHD is getting a lot of buzz, we decided to kick off the first installment of our new miniseries “Featured This Week” with Dr. Jonathan Riddell’s discussion on Pediatric Management of Pheochromocytoma. Dr. Riddell was one of the speakers at the Pheochromocytoma and Paraganglioma 2015 International Conference, held at Upstate University in Syracuse, NY in November, 2015.

We’d like to again offer many thanks to the Pheo Para Troopers for putting together such an amazingly informative event for patients, and for their kind permission to re-post links to their videos from the conference.

One final technical note: the videos for the conference are supported by the Firefox browser.

Call for Submissions: NET Cancer Day 2016

The Pheo Para Project is officially calling for a new round of user submissions from patients as we look forward to producing our second annual NET Cancer Day PSA.

Last year, we saw a narrative of frustration and misdiagnosis unfold in the stories we received. This year, we would like to hear from patients, organizations and medical professionals on how we can change that narrative going forward. Though videos of about five minutes in length are optimum, we will accept submissions of any length. Once recorded, material can be uploaded to our Google Drive folder. If this method doesn’t work for you, contact us, and we will work with you to find a solution.

In the past, patients have asked for some ideas regarding talking points. We suggest you use the following questions as a loose framework to guide you as you tell your stories:

What was your path to diagnosis?
What were your symptoms?
How long have you been aware of your diagnosis?
Are any other family members affected?
How many tumors do you have?
Do you have a known mutation and, if so, which one?
Why are you making this video?
Looking forward, how can we change the narrative for patients like you?

Materials received by September 30, 2016 will be used for the PSA we release. Submissions received after September 30 will be considered and promoted by us through our YouTube Channel, but inclusion in the NET Cancer Day PSA is not guaranteed.

NET Cancer Day is November 10, 2016.

You can view our past PSAs, as well as individual patient stories, by visiting our YouTube Channel.