annual report 2019

board chair’s report

Dear Phellow Pheo Phriends,

For our first full year as a merged organization, the Pheo Para Alliance had a very successful 2019. This would not be possible without the support of our pheo/para community. From patients and caregivers, to medical professionals and support staff, and to all of our donors, we thank you for your continued faith in our mission to advocate, educate and support those affected and to advance research that accelerates treatments and cures.

Here are some highlights of this year’s accomplishments:

  • Appointed a permanent Executive Director – Stephanie Alband
  • Launched a new, user-friendly, information-packed website – pheopara.org
  • Expanded our Board of Directors and made improvements to our governance structure
  • Created a long-term, comprehensive fundraising plan to help sustain our mission
  • Hosted the Pheo Para Alliance International Conference where 12 internationally renowned experts presented to 160 people in person and online. Videos have been viewed 2,000+ times on Youtube.
  • Collaborated with SDHB Pheo-Para Coalition and Paradifference Foundation to fund the Broad Institute of MIT and Harvard research project to attempt to create the first tumor dependency map for pheo/para
  • Hosted two educational webinars with 140 attendees live and over 200 Youtube views
  • Advocated for the pheo/para community on Rare Disease Day in Washington, D.C.
  • Launched a new peer support program with monthly online meetings
  • Shared over thirty patient and caregiver stories that have reached 30,000+ impressions on social media

Our 2019 vision statement included the first four accomplishments listed above. We continue to work on a mechanism for the identification of Centers of Excellence, which will provide an environment where patients will receive the best possible care and learn more about pheochromocytoma and paraganglioma. We are happy to report that our Medical Advisory Board is working on guidelines to create a functional list for patients and the pheo/para community to refer to when seeking care and medical expertise. Launching the Centers of Excellence program is our top priority in 2020, but we have other goals as well.

In 2020 the Pheo Para Alliance will:

  • Host three patient education and wellness conferences in various US cities
  • Continue to expand our Board to facilitate greater diversity and succession planning
  • Participate in several international research conferences representing the pheo/para community, including PRESSOR ISP Prague, ENETS Barcelona, and NANETS Montreal
  • Create a three and five-year vision for fundraising and sustainability with the goal of establishing a research grant protocol

In the past year, the Pheo Para Alliance has been able to focus on key initiatives and priorities. We are happy to report that some projects we felt were long term goals, are now within our reach. A large part of that is due to the work of our Executive Director, Stephanie Alband. She has been able to rally our existing supporters and seek out new pheo/para phriends that have helped to make us stronger, all within a short period of time. In 2020, Stephanie will truly take our pheo phamily to a new level.

As always, none of our successes are accomplished in isolation without the support of those reading these words right now. Stronger United was the rallying call for our merger, but we are now one Alliance and the phrase really speaks to how we must operate as a community. We must all educate, advocate, spread awareness, participate in research, and help to raise funds to ensure our “rarity” is no longer considered as such. We all know that the disease is much more pervasive than ever expected. In fact, at our conference, new data was presented that questions the prevalence and incidence of associated genetic mutations and subsequent tumors, suggesting that they may be more common than previously thought.

The Pheo Para Alliance is prepared, like never before, to continue to break down barriers and be there to support all of you, as much as you have supported us.

On behalf of the Board, I would also like to acknowledge and express great appreciation for the continued support of Progenics who has served as a steadfast, dedicated champion of our goals. We truly appreciate Progenics’ support for the patient, caregiver, and medical communities we aim to serve, and we look forward to working together in 2020.

I thank you all for a wonderful year, and I look forward to continuing to build on our collective success. Finally, I would be remiss if I did not ask you to make a donation, either of your time or finances, in order to help us continue to work for all of you.

All the best in the new year. I am excited to see what the new decade has in store for us.

Sincerely,

Matthew Capogreco
Pheo Para Alliance Board Chair
Son of, brother of, nephew of patients, and a patient myself