annual report 2017
As we begin 2018, we are reminded that there is strength in numbers. Nowhere has that been more apparent for our organization than in the merger that took place in 2017 between the Alliance and the Pheo Para Troopers. Building on the momentum that had been built by the Troopers and the original Alliance, the newly merged Pheo Para Alliance is well positioned to make great strides in 2018 and beyond.
In 2017, we bid a fond farewell to our past Chairman Giselle “Gigi” Huberman. Gigi served the original Alliance tirelessly for ten years. A founding member of the Alliance, she served as Co-Chairman and Chairman, building an organization that has made significant contributions to those suffering from pheochromocytoma and paraganglioma. We are deeply indebted to Gigi for her service and leadership.
Over the past year we have continued to support research efforts aimed towards better diagnosis, treatment, and ultimately a cure for these diseases.
We have strengthened our role as advocates for the pheo/para community, with the Alliance represented at events from Australia to Boston.
Outreach to our community has been strengthened through our increased presence on social media.
We are heartened by what has been started and excited about what we will achieve together. Thank you for being part of this journey.
Acting in accordance with our mission statement, the Pheo Para Alliance accomplished the following in 2017:
A5 SDHB Genomics Study
The Alliance continues to fund this international collaborative research project that is being spearheaded by Australian researchers at University of Melbourne. The project seeks to find new strategies for diagnosing and treating metastatic SDHB-associated pheochromocytoma and paraganglioma. In June, the Alliance held a Cancer Research and Innovation Reception at the Embassy of Australia in Washington, D.C. to celebrate this global partnership.
Rare Disease Week on Capitol Hill
The Alliance was present at this event sponsored by the Rare Disease Legislative Advocates. This week is extremely important to the rare disease community, providing advocates and patients the opportunity to meet with members of the Congressional Rare Disease Caucus and their Congressional representatives.
5th International Symposium for Phaeochromocytoma and Paraganglioma
Held every three years, the International Symposium for Phaeochromocytoma and Paraganglioma, is perhaps the most important gathering for those at the front lines in the fight against pheochromocytoma and paraganglioma: the researchers who are constantly looking for new avenues of detection and treatment. The Pheo Para Alliance was a silver-level sponsor of the event and had representatives in attendance.
Launch of Trooper TV
The first episode of Trooper TV, available on our website, aired in the summer of 2017, focusing on the diagnosis and management of pheochromocytoma in children and young adults.
LACNETS 2017 Patient & Caregiver Educational Conference
The Pheo Para Alliance made its first West Coast appearance over the summer, when it sponsored a speaker and post-conference reception at the 2017 Los Angeles Carcinoid Neuroendocrine Tumor Society Patient & Caregiver Conference. We thank LACNETS for the opportunity to partner with them.
NORD 2017 Summit
The National Organization for Rare Disorders (NORD) summit was held in Washington, D.C. “Rare Disease and Orphan Products Breakthrough” was the theme of the event, giving representatives from the Alliance opportunities to hear from experts from the FDA, NIH, and the orphan product industry and join the conversation on issues of unprecedented importance for the rare disease community.
NCAN Leadership Summit
Held in New York, the Alliance participated in the Neuroendocrine Leadership Summit sponsored by the Neuroendocrine Cancer Awareness Network (NCAN). The focus of the summit was to promote leadership and support groups within the Neuroendocrine and Carcinoid cancer communities.
World NET Cancer Day
2017 marked the first year in which the Pheo Para Alliance has participated in World NET Cancer Day, a global day of awareness organized by the International Neuroendocrine Cancer Alliance (INCA). Our organization was one of the top social media influencers on Twitter for the day. Additionally, we worked with filmmaker Attiya Khan to release a short film documenting her struggle to reach a diagnosis of pheochromocytoma.
The Pheo Para Alliance is committed to the highest standards of good stewardship and accountability. The Pheo Para Alliance is incorporated according to the not-for-profit laws of the State of Virginia.