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CFCF is pleased to announce that this E-Update is supported by Novartis Pharmaceuticals Corporation |  Follow us on Twitter!
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(submitted 7/19/11)
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.
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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 Form 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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Register Today for Our Philadelphia Conference
 Please join us for our first Patient Education Event in the City of Brotherly Love!
The Focus on Neuroendocrine Tumors: Patient and Caregiver Conference will be held at the Philadelphia Hilton on Friday, September 16 from 7:30am to 4:30pm. This event is co-sponsored by CFCF and the University of Pennsylvania Abramson Cancer Center.
Together, we will learn more about the latest developments in research and clinical care for patients with neuroendocrine cancers. You will also hear how your fellow patients fight for a cure during an interactive patient panel. Registration is open!
For the first time, we will offer a live stream of the conference! So whether you're in Dallas, Denver, or Dubuque, you can experience the event firsthand. All you need is an internet connection, and you'll be able to watch each session and even join in the discussions with neuroendocrine cancer experts during a live webchat. Register here to reserve your spot and ask your questions.
All patients and caregivers are invited to submit their suggestions for topics to be discussed during the conference by August 15. Please submit your ideas to info@caringforcarcinoid.org.
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Announcing CFCF's Latest Research Progress
 Matthew Meyerson, M.D., Ph.D., recipient of a grant from the Caring for Carcinoid Foundation, has just published his findings in Proceedings of the National Academy of Sciences (PNAS).
Dr. Meyerson and his team at the Dana-Farber Cancer Institute have uncovered a potential novel treatment approach for a subset of patients with neuroendocrine tumors.
By studying mice, Dr. Meyerson's team was able to show that deletion of of the Rbp2 gene can delay formation of cancer caused by mutations in the MEN1 gene. This research suggests that Rbp2 inhibition could be a treatment strategy for patients with neuroendocrine tumors caused by the MEN1 gene. The MEN1 gene provides instructions for making a protein called menin, a protein which acts as a tumor suppressor.
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The Wheels are in Motion for PMC 2011
As the summer begins to wind down, Team CFCF is gearing up for the Pan-Mass Challenge on August 6 and 7.
This 2-day cycling event pushes participants to the limit as they pedal across the state of Massachusetts. In the words of co-captain Matt Bemis:
"Throughout my 2010 ride, I was incredibly moved by the people clapping and showing their support of all the riders (over 5000!). Seeing a 4 or 5 year old child wearing a shirt saying "I'm a survivor" makes you pedal a little faster or slap them five as you ride by them. I am excited and eager to continue to take part in this ride going forward to help find cures for cancer."
Under the leadership of co-captains Matt, Alexa Shabecoff, and CFCF Board Chair Anne Doyle, the team is 48 members strong! Combined, they have raised nearly $135,000 for carcinoid and related neuroendocrine cancer research by Dr. Matthew Kulke at the Dana-Farber Cancer Institute. Join us in applauding their efforts and supporting the team! |
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Protect Your Right to Orphan Therapies
As part of America's debt deal negotiations, leaders in Washington considered drastic cuts to Medicare for therapies for patients with rare diseases. Discussions will continue this fall, and it is unclear what will happen to the coverage of the more than 100 million Americans who benefit from government health programs.
"The story isn't over," said Joe Baker, president of the Medicare Rights Center. "The future of the programs really hangs in the balance. It could lead to deep cuts and irreversible changes to Medicare and Medicaid that shift costs to beneficiaries."
NORD, the National Organization for Rare Disorders, has created a letter template for you to urge President Obama and your local Senators and Representatives to protect coverage for orphan therapies under Medicare. Click here to send a strong message on behalf of carcinoid and related neuroendocrine cancer patients!
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