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…”

Read more, and learn how you can be a part of our campaign, here.

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!

COVID-19 and NETs

Though the #COVID19 ( #Coronavirus ) pandemic affects us all, persons with chronic illnesses like cancer may be more vulnerable to serious complications from any illness.

Josh Mailman:NorCal CarciNETs sat down with Dr. Pamela Kunz to answer questions from #NETs patients about the disease, and its implications for those with neuroendocrine cancer, which includes #pheochromocytoma and #paraganglioma. Please take a moment to read through this information. If you have further questions, leave a comment and we will do our best to get them answered.

https://norcalcarcinet.org/covid-and-nets/covid-19-nets?fbclid=IwAR1LEpo829p0isWNGbUKIbEzMNihxRhrEslBvaeRphJ2g9YzxV3GmtMWhtQ

Pheo Para Project Founder Nominated

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:

https://awards.wegohealth.com/nominees/18200

Did you miss it?

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!

SDHx Tumor Tissue Needed

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.

 

 

Meet Michelle Whipple Williams

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…

Pheochromocytoma: The Last Episode

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

Kari’s Story

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.

#LetsTalkAboutNETs!!!

PSA: NET Cancer Day 2016

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!