RRPF Supports Cell Reprogramming Research at Georgetown Univ.

In late December 2014, the RRP Foundation awarded a $5000 grant to the Georgetown University Center for Cell Reprogramming.  A research team headed by Dr. Hang Yuan has been investigating the use of “reprogrammed cells” to target therapies for individual RRP patients.  An initial progress report detailing this approach was publish in the New England Journal of Medicine in September of 2012.  the abstract and article can be found at:

http://www.nejm.org/doi/full/10.1056/NEJMoa1203055#t=abstract

Posted in News | Comments Off on RRPF Supports Cell Reprogramming Research at Georgetown Univ.

RRP Meeting / CME Course at Johns Hopkins May 30 2014

On May 30,  2014, Johns Hopkins sponsored a CME course/meeting on RRP –

“Updates in Recurrent Respiratory Papilloma: Clinical and Research Perspectives”

There were a number of interesting talks and discussions. In addition to the RRP Foundation President, Jenn Woo (who was one of the invited speakers), about 12 RRP family members attended the meeting.

A detailed summary can be found at:
http://rrpf.org/meetings/Hopkins2014/HopkinsRRPcoursePatientsFamiliesPerspective.pdf

RRPF poster presentation:
http://rrpf.org/meetings/Hopkins2014/RRP_Hopkins2014_Poster_b.pdf

Posted in News | Comments Off on RRP Meeting / CME Course at Johns Hopkins May 30 2014

Remembering Phil Sensenbach

It is with much sadness that we report the passing of Phil Sensenbach, who died this past November. Phil was a long time member of our RRP patient network. He was diagnosed at the age of 18 months and battled RRP throughout his life. Phil sought solace in religion and spirituality, support from friends and groups. RRP shaped his life and how he lived it. He very much hoped for a cure, but was consumed by the challenges of RRP, which eventually lead to his death at the young age of 45. He spent much of his life in Middletown, NJ, not far from where Marlene and I live. We communicated with Phil a number of times by phone but regret never having the opportunity to have met him in person. He is survived by his son Justin, parents Ronald and Frances, and grandfather Lewis.

Our thoughts and prayers are with Phil’s family.

Posted in News | Comments Off on Remembering Phil Sensenbach

Henry Woo Receives 2012 Amgen Excellence in Volunteering Award

The RRP Foundation (RRPF) is pleased to announce receipt of the 2012 Amgen Excellence in Volunteering Award, in honor of Henry Woo’s volunteer work. Henry, who is one of the RRPF founders, has been a dedicated volunteer since its inception in 1992 and continues to serve as our legal counsel and secretary. The RRPF is most appreciative of Henry’s efforts on behalf of the RRP community and acknowledges the Amgen Foundation’s very generous donation of $5000 associated with this Excellence in Volunteering Award.

Posted in Awards | Comments Off on Henry Woo Receives 2012 Amgen Excellence in Volunteering Award