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 firstname.lastname@example.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!
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!
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!
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.
In honor of #RareDiseaseDay, the Pheo Para Project has remixed the PSA we produced and distributed in late 2015 for NET Cancer Day. Like its predecessor, it is intended to serve as a point of focus for those with pheochromocytomas and paragangliomas during this time when similar conditions are in the spotlight.
As we note in the video, roughly one in ten Americans today is currently diagnosed with a rare disease. The chances are very good that each of you reading this knows at least one person with such a diagnosis.
Those with rare diseases struggle with both obtaining that diagnosis, and with finding treatment options. Symptoms of rare diseases make them easy to mistake for other, more common conditions. Once diagnosed, many patients find they have limited treatment options, because research into rare diseases isn’t funded at the same levels as research into diseases currently thought to be more common.
Today, on the rarest of days, we want you to hear the voices of those diagnosed with rare diseases. Please, when you make the choice this year to make a charitable contribution, consider funding research into rare diseases.
Today is NET Cancer Day. Throughout social media today, you’ll see lots of zebras, and lots of stories of delayed diagnosis. Unfortunately, regardless of the type, neuroendocrine cancers tend to by asymptomatic, or to cause symptoms which are easily confused for more common health conditions.
To learn more, visit our Resources page for some links to pheo/para- and NET-related sites. If you see a friend posting a zebra image today, take the time to learn his or her story, and re-post to show your support. On Twitter, look for the hashtages #netcancerday or #netcancerawareness.
And remember, visit The Pheo Para Project YouTube Channel to see our collection of videos highlighting the stories of some of our friends who have been diagnosed with pheochromocytomas and/or paragangliomas.