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What a year it's been so far!
The Caring for Carcinoid Foundation, focusing on scientific research into carcinoid cancer and related neuroendocrine tumors, has had a huge year to date. We focus on awareness, but also on action. We want to deliver on our often-stated vision - to help patients, their families, and their caregivers. We do this through funding scientific research and providing high-quality and free information aswell as holding fun celebrations for patients to meet each other and enjoy life.
If you continue to miss our events, please sign up for our bi-monthly E-updates (to do so enter your e-mail address in upper right-hand side of the CFCF homepage). You'll know where to go for the next free event, how to get information and receive the latest scientific and clinical information.
This blog is for updates - I want to make sure that patients around the country and around the world are up-to-date with information and what is happening in the carcinoid cancer and neuroendocrine tumor space.
There is so much to be excited about and so much to help with! Please join us in whatever way you choose.
In 2010, the Caring for Carcinoid Foundation has held:
- Los Angeles Neuroendocrine Tumor Patient Education Seminar
- Houston Neuroendocrine Tumor Patient Education Conference
- The Scientific Symposium is underway this weekend in Boston
If you missed these events and would like educational materials from the conferences, please contact firstname.lastname@example.org or call CFCF at 617-848-3977. All CFCF Patient Eduation events are FREE and the materials are FREE! What a bonus in these recessionary times.
A HUGE thank you to all the people and institutions that make it possible for these educational events to be free and a success:
- All of the experts who supported these events in Los Angeles and Houston, attending at their own expense.
- Cedars-Sinai and MD Anderson Cancer Center - committed to providing free space for NET patients to gather and learn.
- Our corporate sponsors, including Novartis Oncology, Lexicon Pharmaceuticals, and Endo Pharmaceuticals.
Thanks also to Leah Borgeson and Cory Stigle for who hosted a fundraising house party in honor of CFCF.
The Scientific Symposium begins tonight (May 6) and ends Friday night. CFCF brings together the thought leaders in basic and clinical research. Each year, we must understand:
- How can we improve the state of research?
- How can we make faster progress?
- What are our funded researchers doing?
- How can we increase collaboration?
Are YOU a physician/scientists? What are your thoughts? Why don't you send us a blog? We need creativity, new thoughts, and new ideas for moving forward.
I continue to participate in the extremely valubale Neuroendocrine Tumor Task Force, in which leading NET and gastrointestinal clinicians convene monthly and at ASCO to create successful and safe trials for patients.
Finally, I encourage you to write your congressional representative about eliminating lifetime caps.
We are patients who, hopefully, will live a long time but with chronic health issues. With the need for expensive scans and treatments, we are among those who benefit from eliminating lifetime caps that are as low as 500k. This seems high, but it you are receiving Sandostatin LAR, a few CT scans and MRIs a year, and must undergo surgical care, then you will be bumping up against that faster than you believe.
Click here to visit the Research America website. This site will give you the tools you need to write your congressional representative about eliminating lifetime caps.