This is Elias. He is a Pheo Phearless Ninja!
Life is filled with enough uncertainty, never mind having a potential time bomb growing in those you care for. Elias - The Phearless Ninja - is a 9-year-old ninja warrior living in Northern California, with his Mum (Australian), Dad, and older brother. He has been training as a ninja for a year and a half, competing in local and regional competitions, and LOVES it! He qualified for the UNAA National Finals 2020 (cancelled due to the pandemic). Now he's trying to use his love for ninja warrior to coach his earthbound Mum and bring attention to a silent terror.  

Elias' Australian Grandma died in April 2019 from a brain tumor. She also had an abdominal paraganglioma (para) causing hypertension, which was associated with a genetic mutation (SDHB). This mutation often leads to development of tumors that are more likely to be malignant (and spread throughout the body). Sadly, Elias’ Aunt and three of his cousins also have the SDHB mutation, and every year they have tests to check for tumors associated with this mutation.  

In celebration of what would have been his Grandma's 70th birthday this year, Elias decided he wanted to raise awareness of pheos and paras, to honor her memory. He decided to do this by getting his Mum off the couch, and trained as a ninja just over 12 weeks, while documenting the journey. The end goal is for Elias’ Mum to complete a ninja warrior course at a gym by her 49th birthday in the begining of June.  

Patient Feedback Requested
Have you been seen at the Huntsman Cancer Institute in Salt Lake City, UT or University of Pennsylvania in the past year for pheo para? Both have applied for a Center of Excellence designation from the Pheo Para Alliance, and one of the criteria to be evaluated for their application is patient feedback. Take this short survey about your experience using the links below.
Research Rookie
Words such as DNA, protein, gene sequencing and organoids are often used to explain how researchers are working to find answers. Yes, DNA, that part of our bodies that makes us all unique and is shaped like fusilli pasta. We sometimes have an idea what these words mean, but when they are all used together, it can be confusing, like mixing fusilli with bowtie pasta!

Research Rookies is an ongoing article series designed to help patients and caregivers understand the research that is being done to find answers to questions about pheo para. It’s written in easy-to-understand language focused on making us all better patient and caregiver advocates and providing much-needed hope to those affected. We also provide links to resources where you can find more information about these research topics. Click on the link to read the first article!
Pheo Para Alliance relies on donations from the community to continue its mission to support those affected by pheochromocytoma and paraganglioma and facilitate research for new treatments.

Here are three easy ways to support our mission: