My name is Linda Rose-Krasnor and I am honored to serve as the incoming Chair of the Board of Directors of the Pheo Para Alliance. I live in southern Ontario, Canada, and have been a member of the Board for the past two years, serving most of that time as its secretary.
The mission of the Pheo Para Alliance is to empower patients, their families, and medical professionals through advocacy, education and a global community of support, while helping to advance research that accelerates treatments and cures. These Alliance goals address serious needs in the pheo para community. They also are important to me on a personal level, given that I am a paraganglioma patient myself, with an SDHD genetic mutation that I share with several close family members.
Pheochromocytoma and paraganglioma comprise a rare set of diseases. The general public, primary care physicians, and even many medical specialists have little awareness of these conditions. Disease-specific information and resources are hard to find. Delayed and misdiagnoses are common and patients frequently tell us their medical professionals are unfamiliar with their illness and even do not believe them when they report their symptoms.
As one of our pheo para patients reported:
“It’s so rare, no one believes it, so I had to do all my own research and fight to get tests.”
And another commented:
“When I found out I had a glomus jugular tumor, I didn't know who to talk to. Nobody had heard about this type of tumor, not even my doctors. I felt so alone.”
The Alliance’s successes in patient education and advocacy, access to medical care, and fundraising are largely due to our two dynamic and resourceful staff, Stephanie Alband, our Executive Director, and Aimee Powell, our Community Engagement Specialist.
I also am fortunate to be working with a talented and committed Board of Directors. Special thanks to Eli Soto, outgoing Chair, for his service during a time of transition for Pheo Para Alliance. His leadership has allowed me to assume the Chair position at a time when the organization has reached great credibility amongst our constituents. We are fortunate that Eli has agreed to serve another term on the Board as a Member.
Finally, our mission is supported by the members of our expert and diverse Medical Advisory Board and a handful of other very dedicated committees, who generously give of their time and knowledge.
In 2023, we will work together to continue promoting education about pheos and paras, increasing access to expert and specialized medical care through our Center of Excellence program, enhance our peer support activities, and promote research into this rare condition. We also look forward to building our relationship with other patient advocacy organizations and industry partners.
We invite you to accompany us on this journey, as a volunteer, donor, and/or participant in our activities. We also welcome you to explore the resources on our website, sign up to receive information about upcoming events, and contact us if you would like to connect with our peer support network. We would be very happy to hear from you.
We wish you all the best for the coming year and beyond. You can reach me at firstname.lastname@example.org with any questions or concerns.
Chair, Board of Directors
Pheo Para Alliance