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CFCF is pleased to announce that this E-Update is supported by Novartis Pharmaceuticals Corporation |
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(submitted 2/22/11)
CFCF is honored to present Survivor Stories. They reflect remarkable courage and determination. Thank you to our Survivors for sharing their courage and words of hope with other patients. Read our newest survivor stories:
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Join Us for a Cure
Make a difference and get involved with CFCF! Unite, meet fellow members of the carcinoid community, and spread awareness at upcoming CFCF events! |
Give hope and a future to neuroendocrine tumor patients: donate to CFCF where 100% of all individual donations go to carcinoid and related neuroendocrine tumor research. CFCF is a 501(c)(3) organization-all contributions are tax-deductible. We want our donors to know that we are allocating their donations responsibly and wisely to achieve a carcinoid cure as quickly as possible.
To learn more, view CFCF's: Audited Financial Statements IRS From 990
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CFCF meets all 20 Wise Giving Alliance standards for charity accountability established by the Better Business Bureau. Click here to check out the CFCF Wise Giving Report. |
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Rare Disease Day 2011
CFCF joined organizations across the world to spread awareness, share knowledge, and attract attention to under-recognized illnesses through Rare Disease Day on Monday, February 28th.
For the third consecutive year, hundreds of organizations joined forces to highlight the research initiatives and awareness efforts of various diseases that often go unnoticed. Rare Disease Day achieved its goal last year of gaining national media coverage on ABC News and expanding its partnership, by involving over 350 organizations in the United States. This year, one of Rare Disease Day's goals was to use technology to motivate people to reach out and share their stories about living with a rare disease.
Over the years, CFCF has made public dozens of patients' and survivors' stories and inspired thousands of individuals to contribute to furthering the research of carcinoid and neuroendocrine cancers. In addition to raising critical funding for neuroendocrine cancer research, CFCF's athletic and fundraising events also serve to increase awareness of neuroendocrine cancers among all who participate, volunteer, support or read about these events. In the spirit of Rare Disease Day 2011, will you help us to continue to raise awareness of these diseases?
Please visit the Advocate for Change page for more information on how you can share your story or create your own event to raise funds and awareness for neuroendocrine cancer research. Or click here to share your story and read other patient's survivor stories from CFCF's website.
Support the active efforts of Rare Disease Day and CFCF by educating others about neuroendocrine cancers and all of the lives that they impact - not just patients, but also caregivers, friends, and loved ones.
You can learn more about Rare Disease Day by clicking here. For more information on how to get involved, visit our website, or share your stories or fundraising efforts with us online via email, Facebook or Twitter.
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Lauren Blogs About Strength in Community
Inspired by Rare Disease Day, CFCF Executive Director Lauren Erb asks about the real number of individuals impacted by illness. By definition, the number of people diagnosed with rare diseases is small. However, by uniting patients' families, friends and communities, we can make a tremendous impact. Click here for Lauren's latest blog entry.
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Houston 5K Event
 Join CFCF team captain Jan Peine for the 6 th annual SCOPE 5K run/walk and kids 1K run/walk (for ages 12 and younger). Bring the whole family for the post-race party, featuring games, puppet shows, music, food and more! Every dollar raised by Team CFCF will fund vital neuroendocrine cancer research. Joining Team CFCF is a two-step process. First, click here to make your donation. You can note that the donation is for "SCOPE-[Honoree's name]" in the box for "Donation Dedication." Next, register here for the SCOPE Race on the MD Anderson website. Please write "Carcinoid" in the box marked "Team Name." Feel free to contact Jan with questions at carcinoid@comcast.net.
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Study Finds Bevacizumab Increases Risk of Heart Failure
In an article published in the Journal of Clinical Oncology, researchers report that bevacizumab (Avastin) is associated with an increased risk of significant heart failure in patients with breast cancer.
Bevacizumab is a VEGF pathway inhibitor. This means it stops the formation of new blood vessels that can help a tumor grow. For more information on VEGF pathway inhibitors, please click here and scroll down to the related heading.
Currently there are active clinical trials investigating the role for bevacizumab and other VEGF pathway inhibitors in treating neuroendocrine cancers.
This article uses data from previous clinical trials to examine whether there was a correlation between bevacizumab and congestive heart failure. It concludes that patients on bevacizumab for breast cancer have an increased relative risk of developing heart failure, even though the overall incidence remains low.
Please note that there are some limitations to the study. It did not examine the health records of individuals taking part in the bevacizumab trials. Therefore, comorbid conditions, prior exposure to cardiotoxic therapies, and individual risk factors were not taken into account. Still, all patients should be aware of the potential for heart problems when seeking treatment with VEGF inhibitors.
The authors conclude, "...the use of bevacizumab increases the risk of serious CHF [congestive heart failure] in patients with metastatic breast cancers...Physicians and investigators should be award of this adverse effect and should monitor patients receiving bevacizumab closely to offer early intervention and to optimize the balance between oncologic clinical benefit and life-threatening adverse events."
CFCF encourages any patient receiving or considering treatment with VEGF inhibitors to discuss any potential risk with their personal physician. For help in finding a physician well-versed in treating patients with neuroendocrine tumors, please visit the doctor database or contact us.
To view the full abstract from the Journal of Clinical Oncology, please click here. |
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Do You Have Questions About Clinical Trials?
CFCF's third annual Patient Education Weekend will be held in Los Angeles on March 19. This year, we will be holding a panel featuring leading doctors in the field to discuss questions regarding clinical trials participation for patients with neuroendocrine tumors.
What would you like to learn more about? Do you have questions about clinical trials or other treatment options? Please send your thoughts to info@caringforcarcinoid.org by Friday, March 11.
The weekend also includes the Los Angeles 5K Run/Walk (March 19), a Friends of CFCF Luncheon (March 19), and the Los Angeles Marathon (March 20).
To learn more about the conference and for details on how to register, please see the agenda, visit CFCF website or call 617.948.2514.
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