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…”
Read more, and learn how you can be a part of our campaign, here.
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 email@example.com 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!
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!
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.
It’s NET* Cancer Day! Read on to learn why today is so important.
Why do we need this day?
Too frequently patients are misdiagnosed when presenting symptoms of NET cancer. Common misdiagnoses are IBS, asthma, diabetes. Patients with pheochromocytoma often have their symptoms attributed to anxiety, menopause, hypertension, and thyroid disorders. The average patient with NET cancer will see six different healthcare professionals, over twelve visits, before they are correctly diagnosed. (INCA)
How does NET Cancer Day help?
Raising awareness about NET cancers helps empower patients and medical professionals. Better information leads to earlier diagnosis, well-informed medical professionals, and overall improved quality of life for people with NET cancer and their families.
NET Cancer Day is a worldwide campaign. Accessible and equal care and treatment for NET cancer patients is a priority of NET Cancer Day. This helps strengthen international and local communities and improves public health all over the world. Working together is the best way to learn and grow. (NET Cancer Day)
Where can I learn more?
To learn more about NET Cancer Day, go to their home page or check out their Twitter account (@netcancerday). For more information about pheochromocytoma and paraganglioma, we recommend starting with Dr. Karel Pacak’s page with the National Institutes of Health (NIH).
Learning is the first step toward making a change! Educate yourself and others with the resources above.
#netcancerday #netcancer #neuroendocrine #incalliance
*NET stands for neuroendocrine tumor.