Re: The Stubbs Family
Here are a few things that you might like to know about the foundation.
They have established a Medical Advisory Committee (MAC) headed by Dr. Steven Alberts - head of the GI oncology department for the Mayo Clinic, he is joined by Dr. Nicholas Vauthey - at MD Anderson as well as others well established and well respected in the field of GI oncology.
They have been focusing their attention this year on establishing relationships with the National Institute of Health (NIH) and the National Cancer Institute (NCI). We need them to more fully understand the need for funding to be allocated to cholangiocarcinoma. Both Dr. Alberts and Dr. Vauthey have research funded by and published for these institutes and having them on board helps assist us in getting the funds we need for research.
All the funds that have come to the foundation have been used for two purposes, outreach and patient advocacy. Last year we attended the two ASCO conferences and could not have been more warmly welcomed. All of the Dr's we spoke with wanted to be involved with the foundation and were excited that a group was going to step up and do some advocacy to get government funding for research into cholangiocarcinoma. At these conferences we are able to speak freely with the top oncologists, surgeons and radiologists in the nation. We are able to make them aware of the foundation and the things we are trying to accomplish, we have established critical relationships and the work is moving forward. This year we have and will continue to attend additional conferences and establish relationships that will help increase the focus and attention on cholangiocarcinoma.
We have had many gracious people give us use of their expertise and knowledge as we have traveled down this road. At our last board meeting in Houston, Paula Kim - founder of PanCan (Pancreatic Cancer Action Network - her groups advocacy at the NIH and NCI is responsible for many of the last years recent developments in Pancreatic Cancer) spent several hours on a conference call with us helping us understand exactly what needs to be done to really get funding that will impact cholangio patients. Her assistance has been invaluable to us.
We also continue to reach out to the cholangiocarcinoma community. You will see on the new website that we intend to have more information about cholangiocarcinoma than anywhere else in the world. Any patient that comes to the website will have everything out there at their fingertips. We hope patients will never have to do their own research again. Unfortunately we find that many don't find the site until a family member has died or it is too late. We are developing marketing materials right now for oncologists that will direct their cholangio patients to the website. We will also be attending the Oncology Nursing Society (ONS) conference in May where we will distribute to 6,000 oncology nurses information on how to direct their patients to the foundation for support and also information for hospice nurses, who deal with cholangio rarely and find it difficult and different from other end-of-life cancer experiences.
These are just a few of the things we will be doing with the funds from the foundation. We hope in 2009-2010 to be prepared to start funding our own research into cholangiocarcinoma. Right now we don't have ample funding to do that, however we are working hard to establish the kind of relationships that can draw the best and brightest minds in medicine to the foundation so we can begin. We all feel strongly that we can make a difference and appreciate those who have faith in us to do so.
