|
CFCF is pleased to announce that this E-Update is supported by Novartis Pharmaceuticals Corporation |  Follow us on Twitter!
 Like us on Facebook!
Visit us on YouTube!
|
Kayla(submitted 9/14/11) 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.
|
|
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
|
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. |
|
|
|
|
|
|
Celebrating Worldwide NET Cancer Day
 The Caring for Carcinoid Foundation will be co-sponsoring its second annual Patient Education Seminar with MD Anderson Cancer Center on Friday, November 11, 2011 in Houston, TX. We hope you will join us for a day of education and fellowship while we celebrate the Second Annual World NET Cancer Awareness Day.
This free event will feature expert clinicians, patient discussion panels, and time for Q&A.The event will feature such topics as newly-approved treatments for neuroendocrine tumors, peptide receptor radiotherapy, surgery, and the latest in neuroendocrine cancer research. In the spirit of World NET Cancer Awareness Day, the event will conclude with a patient panel on optimizing treatment choices. Complimentary food and drink will be served.
Register today!
|
|
Study Suggests Peptide Receptor Radiotherapy Can Improve Patient Reported Quality of Life
A recent article published in the Journal of Nuclear Medicine suggests that peptide receptor radiolabeled therapy (PRRT) can improve patients' self-reported quality of life. In particular, the authors noted improvements in patient-reported social and emotional well-being, insomnia, appetite loss, and diarrhea after treatment with Lutetium-177 (Lu-177).
The study tracked self-reported quality of life (QOL) among 265 Dutch patients diagnosed with gastroenteropancreatic and bronchial neuroendocrine tumors who were treated with Lu-177 at Erasmus Medical Center in the Netherlands.
PRRT will be among the topics at our Patient Education Seminar in Houston, TX.
Any patients considering this or any other treatment options should always consult with a physician well-versed in treating neuroendocrine tumors. Please consult CFCF's Doctor Database or call 617-948-2514 for help finding an experienced clinician.
|
|
Team CFCF Conquers Boston Marathon Route
Congratulations to the 30-member strong Team CFCF on completing the 2011 Boston Marathon Jimmy Fund Walk!
On a beautiful September day, CFCF's walkers hit the sidewalks of Massachusetts with thousands of people all walking for the same great cause - to cure cancer!
Team CFCF has raised nearly $35,000, the best showing ever for CFCF's Jimmy Fund Walk crew. Our heartfelt thanks to each and every walker and their friends and family for the commitment of time, effort, and financial support. A special shout out to team captain Theresa Welsh who inspired her teammates by recruiting walkers, handling logistics, and keeping the group smiling along the 26.2 mile route!
The funds raised will be directed to the work of Matthew Meyerson, MD, PhD. Meyerson and his team at Dana Farber are working to identify which genes are altered in carcinoid cancer and to compare these genes' sequences to genes from normal tissue. The team will then determine which of these genes are most likely to cause tumor growth. Identifying these genes will hopefully lead to the development of new targeted therapies for patients. Click here to view photos of our tremendous 2011 team. We look forward to seeing you in 2012! |
|
New Initiatives for Rare Disease Drug Development
Recently, the United States Food and Drug Administration (FDA) proposed new initiatives under the re-authorization of the Prescription Drug User Fee Act (PDUFA). The PDUFA authorizes the FDA to collect fees from companies that produce certain drugs and biological products.
The PDUFA's re-authorization included a section on "Advancing Development of Drugs for Rare Diseases." This initiative outlines several measures to improve orphan drug development. Proposed changes include:
- Increasing Rare Disease Program staffing
- Improving FDA reviewers' understanding of approaches to studying drugs for rare diseases
- By mid-2014, the Rare Disease Program will conduct a public meeting to discuss issues in clinical trials for studying drugs for rare diseases, including such questions as endpoint selection, safety exposures, assessment of dose selection, and development of patient-reported outcome instruments
The full "Advancing Development of Drugs for Rare Diseases" proposal can be found here, under "Section IX, Subsection E."
CFCF has a history of advocating for carcinoid and related neuroendocrine cancer patients at the Federal Government. Click here to learn more about our initiatives and how you can get involved. CFCF will continue to keep you informed of orphan drug policies affecting the neuroendocrine cancer community.
|
|
|
|
|
