Tina...on behalf of everyone mentioned by you, thank you.
Please know that we are in this together. For example: this discussion forum is a People Forum. Though the foundation provided the venue -minus the 80 thousand postings by people like you - it would represent a blank slate only. We are in awe of the incredible support and knowledge exchanged amongst the individual members.
Although, we have begun to hire outside contractors (occasionally) and employ one full time Executive Director, the overwhelming amount of work is volunteered by wonderful people wanting to make a difference.
The work behind the scene is endless (literally) but we won't stop until we witness major changes in regards to early detection (at this time happens by chance only) and by more advanced and targeted treatment options. Ultimately though, we want to see a cure of Cholangiocarcinoma.
We are overwhelmed by the amount of monies donated to the foundation. It continues to increase year by year and all of it is carefully selected for specific purposes i.e. research support for different institutions. We can't thank our donors enough. Much of the money is donated from kind individuals in memory of a loved one; large contributions come from fundraisers held by a volunteer in memory of a loved and then are distributed to us.
The medical community at large continues to support us in all aspects i.e. increased research and with their services on the Medical Advisory Committee. Drs. Ghassan K. Abou-Alfa, MD and his wifeEileen M. O’Reilly, MD, spent hours and hours providing the biliary book content to the Cholangiocarcinoma Foundation. We volunteered our input for changes and/or additions and carry the cost of publication and distribution of the biliary book because; we feel strongly that each and everyone should have the opportunity to have the opportunity to understand this disease and the consequent treatment options available.
Our much loved moderators continue to help guide everyone through the maze of information CC patients/caregivers are confronted with. Much of their knowledge is based on personal experience either, as patient or as caregiver.
Volunteers offer their precious time for the numerous conferences we attend. They also handle our blogging, marketing, and other needed task for which we don't have allocated funding.
Volunteers work with the FDA, NIH, and NCI disease specific Task Forces. We simply could not exist were it not for the wonderful, kind, caring and selfless people donating their precious time to our cause.
As we say often: we are in this together, all the way.
THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER