Summer News
Facebook Live Webinar with Pheo Para Expert
Please join us for the first episode of Facebook Live Webinar series where patients and their families will have an opportunity to tune in and ask pheo para experts questions via Facebook Live.

Our inaugural event will feature Karel Pacak, MD, PhD, DSc from the NIH. Dr. Pacak is Chief of Section on Medical Neuroendocrinology, NICHD, which is one of the largest centers in the world to diagnose and treat patients with pheo para. This episode will be moderated by Pat Collins, Reporter, for NBC4 Washington.

This webinar series is made possible through an educational grant provided by Progenics.

Facebook Live featuring Dr. Karel Pacak
Topic: Metastatic Pheo Para
Thursday, 9/5, 4:30 pm PT/7:30 pm ET



How To Donate Your Tumor Tissue!

Earlier this month, the Pheo Para Alliance , the SDHB Pheo-Para Coalition , and the Paradifference Foundation entered into a three-year agreement with The Broad Institute of MIT and Harvard to attempt pheochromocytoma and paraganglioma tumor dependency mapping. The Cancer Dependency Map Project at the Broad is mapping cancer’s weak spots to uncover new drug targets. You can learn more about the project here .

ARE YOU HAVING SURGERY SOON?
A critical element to the success of this project will be tumor tissue donated by pheo para patients for the development of next generation cancer models, which will be made widely available to the research community. Patients who are having surgery, and would like to donate their tissue can learn more about enrolling at Pattern.org .  Our goal is to secure 30 tumor tissue donations in the next 18 months. Please help us reach our goal!

WANT TO LEARN MORE?
Register for a patient webinar scheduled for Tuesday, September 24 at 4pm PT/7pm ET to learn more. The webinar will explain the tumor tissue donation process. If you aren’t a candidate to participate, you can still support this project by making a donation at pheopara.org/donate.

Patient Webinar
Topic: Donate your Tumor Tissue Through Pattern.org
Tuesday, 9/24, 4:00 pm PT/7:00 pm ET
Paul's Story
Looking back, my symptoms started as early as age 10. I lived in a heightened state of anxiety, and every day stresses seemed to be getting gradually more unmanageable. I didn’t know what was normal, so I just figured that was what growing up felt like. Over the next couple years, things progressed. Along with experiencing my first real panic attacks, I started having brutal headaches triggered by exercise. They’d be severe enough to drop me to my knees and would often be followed by sweating and vomiting. After a few trips to various doctors, they decided that I had anxiety and migraines. I was medicated and felt relieved that they had finally figured out what was wrong with me. They learned they were wrong when at the age of 13, going under anesthesia for the first time during a minor operation, my blood pressure spiked to 250/150. After their initial shock subsided, everyone started to put the pieces together. They found a 5cm and a 2.5cm paraganglioma in my abdomen, and after a long and careful surgery, I got my life back again. 

I was assured that these were a one time thing, and that I wouldn’t have to worry about it again. I went on with my life, and built a career around doing sound design for video games. At the age of 29, things were slowly getting harder again. My tolerance for stress was low, I was having all sorts of unexplained symptoms, and my weight was slowly dropping. I mentioned para to a doctor in the area, and he said it wouldn’t be worth screening for since my blood pressure wasn’t elevated all the time. When I hit 30, my body had become totally unmanageable and I knew without a doubt that the tumors were back. I demanded that they test me again, and a week later had the results I feared more than anything. Read the rest of Paul's story here.
DONATE MONTHLY Click on the link below! Your monthly donation can really add up! Giving a small donation every month helps us expand our mission because we can count on your ongoing support.

EMPLOYEE GIVING Many employers have employee giving and matching gift programs. Search for your employer using the Double Your Donation page.

THROW A BENEFIT PARTY What are your hobbies? What are you passionate about? Raise funds & have fun! We can help with flyers, registration/fundraising webpage, and reaching out to pheo para phriends in your area. Here are some ideas, but the skies the limit! Check out this how-to guide !

Kids/Adults Obstacle Course
Mystery Dinner/Partner with a local Escape Room
Urban Scavenger Hunt
Good Ol' 5K/Walk
Personal Extreme Challenge (Hike a mountain, 10K steps/day)
Benefit Workout Class (Pilates, Crossfit, Spin, etc.)

FACEBOOK FUNDRAISER If you have a birthday or an anniversary of your diagnosis or surgery coming up, this is a quick and easy way to raise funds and tell your story. Find out more on our Facebook page.

AMAZON SMILE Support the Pheo Para Alliance every time you shop on Amazon, at no additional cost to you at smile.amazon.com (no app purchases).

SHARE YOUR STORY If you are interested in sharing your pheo para journey, please fill out this form . Or, you can send us a 5 minute (or less) video.   
Watch this video about Dave's Genetic Testing Journey below and see other media and learning resources about pheo para at the KnowPheoPara Learning Center by Progenics.