 May 2026 Newsletter Growing Together for Our Community This community never stops moving — advocating, researching, showing up for one another, and refusing to let a rare diagnosis define the limits of what's possible. Here's what we've been up to, and what's coming next. Advocate. Lift Your Voice. Expert Insights. Join Us. Call for Phearless Troopers. Advocate for the Time You Deserve Your relationship with your PPGL specialist matters — and so does having enough time to make it meaningful. PPA has developed a template letter that you can send directly to your hospital's CEO to advocate for adequate appointment time with your Pheo Para care team. Act Now!  Advocacy Spotlight: Ann Licker Brough the Patient Voice to Medical Education We want to shine a spotlight on Ann Licker — a PPA patient, caregiver, and fierce advocate — who recently represented our community in the Rare Endocrine Disease Fellows Program hosted by the Endocrine Society, with support from the National Organization for Rare Disorders (NORD). Ann spoke about living with PPGL — the cardiovascular impact, the diagnostic journey, and what it actually means to navigate the healthcare system with this disease. Her insights were a powerful reminder that patients are essential teachers. Medical education is better when it includes the people who live with the disease every day.  Your Voice Shapes PPGL Care — Complete SCOPPE 2.0 The SCOPPE 2.0 survey transforms your lived experience into evidence that drives research, advocacy, and care — and every response makes the case louder. If you haven't completed it yet, please take a few minutes: your voice is data no researcher can collect without you. Complete the survey!  Call for Phearless Troopers PPA volunteers, board members, and staff are working hard to grow its capacity to support our community. We have volunteer opportunities for:
If you are interested, please email jobeth@pheopara.org. NEW! Expert Insights — Genetic Testing  It Runs in the Family — and That's Actually Good News Why finding a PPGL mutation in one person is a life-saving opportunity for the whole family By Dr. Stephen Furlong, Vice Chair, Board of Directors — Chair, Research Advisory Board When genetic testing reveals a hereditary mutation after a PPGL diagnosis, the conversation turns to family. That can feel like a heavy moment. But here is what often gets lost in the weight of it: finding the mutation is one of the most powerful things that can happen for everyone who shares your DNA. In PPGL, approximately 40% of cases are caused by inherited mutations — the highest hereditary rate of any human tumor type. The most clinically significant genes include SDHB, SDHC, SDHD, SDHA, VHL, RET, NF1, and others. Each carries a different risk profile, but they share one critical characteristic: they can be detected in the blood or saliva of a family member before a tumor ever forms. This is the logic of cascade genetic testing: once a mutation is identified in one person, systematically testing first-degree relatives — parents, siblings, children — can identify who else carries it. A positive test in a family member who has no symptoms is not a diagnosis. It is a head start. A mutation carrier who knows their status can begin structured surveillance: regular biochemical testing, periodic imaging, and specialist follow-up. In carriers of SDHB mutations — which carry the highest risk of metastatic disease — early detection can be the difference between a tumor removed surgically at a localized stage and a disease that has already spread before anyone knew it was there. Knowledge, even difficult knowledge, gives families choices. A family that does not know cannot act. A family that does know can monitor, prepare, and increasingly access emerging precision therapies at the earliest and most treatable stage of disease. Join Us!  SAVE THE DATE The Circle of Hope Gala returns to Boston on September19 at the Hyatt Regency Boston Harbor — an unforgettable weekend featuring an afternoon educational session, courageous patient honoree, a special guest speaker and book signing celebrating the caregiver experience. This is the PPGL community's signature gathering of the year, and we would love to see you there.  JP’s Backyard Ultra & Hike — September 27, 2026 You don’t have to be in Napa to take part. Join us in person or from anywhere — on a trail, treadmill, or around your neighborhood. Run, hike, walk… or participate your way. 💛 Introducing JP’s Ultra Hearts Campaign Not able to be active? You can still make a powerful impact. Join Ultra Hearts by completing and sharing acts of kindness in honor of Jonathan’s annual fundraiser for the Pheo Para Alliance. Set a fundraising goal, rally your community, and choose your path:
Every mile. Every act of kindness. Every dollar fuels rare disease research, patient education, and life-changing support for the PPGL community. Show up your way. Make it count. Welcome, Our New Board Members  We are thrilled to welcome extraordinary individuals to the PPA family — each bringing deep expertise and genuine commitment to the PPGL community. Denise Samocki, Chair, Patient Engagement Committee  After being diagnosed with a vagal paraganglioma in 2018, Denise began researching extensively; seeking out experienced specialists, exploring treatment options, and working to better understand her diagnosis. In 2022, she discovered the Pheo Para Alliance, finding its webinars and support meetings to be an invaluable resource. Encouraged by previous Community Engagement Specialist Aimee Powell, she became a peer support volunteer and later began facilitating and co-facilitating patient support meetings. For Denise, participating in the PPA provides connection with others who understand the journey firsthand. While each patient's path is different, the common thread of a pheo/para diagnosis creates a foundation for meaningful support and mutual understanding. Stephen Furlong, PhD, Vice-Chair, Board of Directors & Chairman, Research Advisory Board  Dr. Furlong is a biomedical scientist with decades of experience in drug discovery, biomarkers, and rare cancer research. He has worked at institutions including Harvard Medical School, Brigham and Women’s Hospital, and AstraZeneca. Dr. Furlong brings a unique perspective that bridges science, research, and patient advocacy. Bethel Stevens, CFA, Member of the Board of Directors and Finance Committee  Bethel is an accomplished impact investing professional with extensive experience in international development finance and health-focused investment across emerging markets. Bethel is also a best-selling author, speaker, and brings a powerful combination of financial expertise, global perspective, and a deep personal commitment to advocacy. Nejla Abbed, MS, Member of the Board of Directors and the Patient Engagement Committee  Nejla is a seasoned pharmaceutical marketing and strategy leader, She brings deep expertise in launching therapies, patient engagement, and building awareness through innovative campaigns. PPA Team Changes   We’re excited to share two important updates from the Pheo Para Alliance team. Jen Marchetti joins PPA as Program Manager (10 hours/week), bringing deep experience from her leadership as former Chair of the Patient Engagement Committee. She will support and strengthen our patient, caregiver, clinical, and research programs. At the same time, Cindy Chen has completed her Master’s in Industrial & Organizational Psychology at San Jose State University and has accepted a full-time leadership role cultivating growth in high-potential teams. She will continue with PPA (10 hours/week), transitioning to Digital Community Engagement Manager while supporting onboarding and program continuity. This transition reflects both growth and continuity as we expand our programs and digital engagement. Feel free to congratulate them: jen@pheopara.org | cindy@pheopara.org Recording Now Available: Navigating Head & Neck Paragangliomas: Expert Insights  Head and neck paragangliomas require specialized expertise — and this webinar delivers exactly that. Two of the world's leading authorities, Professor Mario Sanna and Dr. Susan Richter, joined PPA Medical Advisory Board Chair Dr. Karel Pacak for an in-depth discussion on diagnosis, surgical innovation, cranial nerve preservation, and long-term surveillance. Patients Lacey Koelling and Karen Horton brought the conversation to life with their firsthand experience. Missed it live? The recording is available now. Every Dollar Moves Us ForwardEven $5 makes a difference. If this newsletter resonated with you — if you've ever found value in what PPA offers, or know someone who has — please consider making a gift today. Our mission is to empower patients with pheochromocytoma or paraganglioma, their families, and medical professionals through advocacy, education, and a global community of support, while helping to advance research that accelerates treatments and cures. Founded in 2007, the Pheo Para Alliance is a registered 501(c) (3) nonprofit organization, incorporated in the state of Virginia. Tax ID: 26-1510652 |
