On April 5th, Pheo Para Alliance traveled to Washington, 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 to ensure that research in nuclear medicine receives the funding needed.
Community Engagement Specialist and SNMMI Patient Advocacy and Advisory Board member Aimee Powell represented PPA in this effort. She was joined by patients Jen Marchetti and Paul Kaczmarek, both from Massachusetts. In total, 65 SNMMI members, patients, and industry representatives took part in Hill Day, and Aimee, Jen and Paul took a total of 11 meetings with representatives from California, Connecticut and Massachusetts. “Once again, our patients readily answered a call to action,” Aimee said. “We continue to see good participation at events like this, especially for a rare disease like pheo para. It speaks to the desire our patients have to be active agents for positive change, not just for themselves or pheo para, but for all those struggling to reach a diagnosis or receive treatment.”
Top priorities for this year’s discussions were co-sponsorship of the Facilitating Innovative Nuclear Diagnostics (FIND) Act, and asking members to support the inclusion of neuroendocrine tumors (NETs) – which would include pheo para – in the list of diseases earmarked to receive special research funding through the Congressionally Directed Medical Research Program (CDMRP). To learn more about Hill Day and how you can take part in next year’s event, contact us. To learn more about the SNMMI, visit their website: www.snmmi.org
