Get moving for two weeks in May by walking, running or riding to raise funds for our phriends affected by pheochromocytoma & paraganglioma! Create a team and invite your phriends and phamily to make the most of "Move It May!"

Our goal is to raise $15,000 and collectively trek 15,000 miles!

We will have contests and prizes to keep you moving, fundraising and motivated!

Registration is free, but we ask all participants to:

***Make a DONATION when you register

***Create a Fundraising GOAL

***ASK your phriends and phamily to participate and/or donate to support you!

Bessie Yang Lewis Joins Board of Directors

PPA welcomes Bessie to the Board of Directors. Bessie’s pheo para journey began when her husband Scott was diagnosed with metastatic paraganglioma in March 2021. She was his caregiver over the next 14 months as he underwent numerous treatments. Scott passed away in May 2022 at the age of 45. She writes about her grief journey at https://scottandbessie.blogspot.com/.

Bessie has hit the ground running with PPA. In February she, and other pheo para advocates attended Rare Disease Week on Capitol Hill to advocate for rare patients and caregivers.

Welcome Bessie!

Clinical Trials Made Simple

Participation in a clinical trial is an important tool in the development of better health outcomes for those with pheochromocytoma and paraganglioma. Click on the link below to learn more about clinical trials and search for trials that may be right for you.

Lisa Anderson Raises $8K+ for Early Career Investigators

Lisa serves as BOD Treasurer & Phearless X Volunteer. She is passionate about educating early career clinicians and engaging investigators in pheo para research. With the support of her dedicated phamily and phriends, Lisa has raised over $8,000 in honor of her son. Lisa's gift will fund early career investigators to share their research at relevant conferences.

Lisa's tremendous support fuels the pipeline of investigators to improve health outcomes for future generations. A huge thanks to Lisa and supporters for their tremendous dedication!

You can designate your donation for research too! Reach out to stephanie@pheopara.org to learn more.

On April 5th, PPA traveled to DC to take part in the Society of Nuclear Medicine and Molecular Imaging (SNMMI) annual Hill Day. This day of advocacy focuses on educating our Congressional leaders about the benefits of nuclear medicine and the actions they can take to help support the availability of nuclear scans and therapies, ensure that they’re accessible to all patients, and ensure that research in nuclear medicine receives funding.



Community Engagement Specialist and SNMMI Patient Advocacy and Advisory Board member Aimee Powell attended along with patients Jen Marchetti and Paul Kaczmarek, both from Massachusetts. In total, 65 SNMMI members, patients, and industry representatives took part in Hill Day. 

Stephanie Alband Moderates INCA/ENETS Symposium in Vienna

Focused insights from neuroendocrine cancer patient advocates and NET specialists were shared and discussed at the INCA/ENETS Symposium on March 13-15, 2024. The event was held during the 21st Annual ENETS Conference in Vienna, Austria.



The symposium titled “Challenges and Strategies of Engaging Non-NEN Healthcare Professionals in Understanding NENs” was chaired by INCA President & Pheo Para Alliance Executive Director, Stephanie Alband, and ENETS Chair Eva Tiensuu Janson.

Phearless Phriends in DC for Rare Disease Week!

Rare Disease Week was Feb 25 - Mar 1, and Para Alliance was on the ground in the US capitol to raise awareness about pheochromocytoma and paraganglioma, as well as the challenges faced by those affected by these rare tumors.

Aimee Powell, Henry Rowen, Jenny Rowen & Bessie Lewis participated in Rare Disease Week on Capitol Hill which is organized by the EveryLife Foundation. Over 700 patients, caregivers, allies and advocates from every US state, the District of Columbia (DC) and Puerto Rico spoke to legislators and their staff about some bills that, if passed, would help all rare disease patients. Special thanks to Bessie Lewis for hosting.

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