Volunteerism is on the rise! Daphna Smolka is working with us on a P/P friendly cookbook that will be also be a P/P Community effort. Tina Lehne is spearheading the Awareness Ambassador effort and preparing the program’s requirements and materials. Marketing guru Edie DeVine is helping with our public messaging and press releases. Dr. Maulik Dhandha is working on a paper reporting on the diagnostic delays of P/P we hope to publish in an academic journal.
And speaking of journals, members of our Medical Advisory Board joined 30 other physicians in finalizing an MMP consensus statement providing clearer definitions and outcome measures for accurate and reproducible definitions for disease extent, activity, outcome measures, end points and therapeutic response. Thank you Prof. Dedee Murrell and Dr. Victoria Werth for leading this effort.
This issue of the Quarterly is another great one! PV patient Martha Cusick was so happy with the help she received from her Peer Health Coach, she set a goal to fundraise for research and awareness (p. 4). And what do you do when you need a cancer treatment, but getting it will cause a severe flare? Read Joan Blender Ominsky’s story on page 15.
The Awareness Campaign has a new look, more help, and a catchy slogan. Kate Frantz keeps you up to date starting on page 6. Clinical psychologist and PV patient Terry Wolinsky McDonald explains the Nuts & Bolts of Depression (p. 7). The discovery of VH1-46 is the topic of two articles (pp. 8 and 9). Two P/P experts discuss the importance of measuring patient quality of life (p. 11). And we have another delicious Vicky Starr recipe on page 19!
Lastly, I hope to see you in New York for our 2015 Patient Conference. The Committee is busy finalizing the date (end of April) and venue (near Central Park). Keep an eye on your mailbox and inbox for more information in the coming months! I promise this event will be BIG!