I wanted to share a quick update on Team RARE BUT REAL as we approach our various Cycle for Survival Dates. As a reminder, we are aiming to raise $1,000,000 - which will be fully devoted to research in finding better treatment options and one day a cure for cholangiocarcinoma, a life threatening disease with which I was diagnosed 13 months ago. And to get there, I need your help.
But first, I wanted to share that our team is now led by a triumvirate. Through this difficult journey, I have met two extraordinary women, both of whom are fighting cholangio, and both of whom are joining me to lead our Cycle team and all of our fundraising efforts. Lorraine Twohill, another young woman (44 just like me) with two young children, a demanding career, and a happy and healthy life, was diagnosed with cholangio this past year. She is extraordinary in more ways than I can name here, but please read more about Lorraine and the Palo Alto team she is leading HERE. A third woman, even younger than Lorraine and me, was diagnosed with this dreaded disease in November 2016. Danielle is another awe-inspiring woman, with a thriving family life with one young child, and an incredible career as an attorney and lobbyist in DC, and she will be leading teams for us in DC, Seattle, and Miami. Please read more about Danielle’s story HERE and on her blog HERE. To read more about my story and progress, press HERE. I will be leading teams in NY, LA, and London.
Lorraine, Danielle and I think of ourselves as soul sisters, warriors, or maybe even Charlie’s Angels without guns but armed with a vengeance to conquer cholangio!
As many of you know, I am under the care of an extraordinary human being and doctor, Ghassan Abou-Alfa, MD at Memorial Sloan Kettering Cancer Center. Lorraine and Danielle both have incredible medical care near their homes at UCSF and Georgetown University Hospital, but they have also decided to work with Dr. Abou-Alfa, as a part of their medical team.
Collectively, we have decided that joining forces and funding and focusing on supporting Dr. Abou-Alfa and his team of researchers and clinicians will give us the best chance of surviving and hopefully thriving. Dr. Abou-Alfa is the recognized world leader in treating cholangio, and his approach is collaborative, teaming up with other institutions and doctors around the world who can help in this fight.
A dreaded statistic about this rare form of liver cancer is that there is no current cure, and the historical statistics describe a 2-3% five-year survival rate. Lorraine, Danielle and I are determined to demolish this statistic and this disease and to help the growing ranks of people afflicted with this disease (which at present is terribly under-funded, and thus under-researched). PLEASE HELP US and read below on how -
- Join us for one of our rides and help us raise money -
- Boston (February 4) (this ride will be led by bio-tech company employees from a phenomenal company called Agios, who is doing some clinical trial work in cholangio.)
- Palo Alto (February 12th)
- Washington, DC (February 25)
- Seattle (February 26)
- Los Angeles (March 4th)
- Miami (March 4)
- New York (March 11th)
- London (late spring date forthcoming)
- Make a contribution and help us make an impact on our lives and so many others struggling with cholangio.
- Spread the word please share our message with friends and family, on social media, and if you have any print or TV media contacts, please let us know that as well.
- Please keep sending your positive thoughts and prayers your notes, support, and gestures help us keep going on our toughest days and for everything you do, we are forever grateful.
Last year’s Cycle for Survival was one of the most inspirational days of my life, and to boot, we raise critical funding for those of us suffering from rare cancers. Together with our family and friends, we will ride, raise money, raise awareness, and pedal through laughter and tears to make a difference! We thank you with our hearts and souls for helping us in our fight to survive and thrive.
With LOVE, Bita, Lorraine and Danielle
Speech from Cycle for Survival 2016: