Lauren

Exciting Developments at the Caring for Carcinoid Foundation

Monday, February 6, 2012

I am writing today to share some exciting personal and professional changes.

After a brief leave, I will return to the Foundation as the Foundation’s first-ever Director of Research.  I am honored to be moving into this important position focusing exclusively on advancing the foundation’s research portfolio and advancing the progress we have achieved together.

As I reflect on the last five years as Executive Director, I am incredibly proud of all that the foundation has achieved.  Last year brought some of the biggest breakthroughs in neuroendocrine tumor research-to-date, and I look forward to working with you to build on these groundbreaking results.

FDA Review of New Pharmaceuticals for Patients with Rare Diseases

Friday, November 4, 2011

Did you know the Food & Drug Administration (FDA) has responsibility for products that comprise more than 20% of all national consumer spending? And yet the Federal government gives the FDA just $8 per year for each American. The FDA has 10,000 employees to monitor food safety, review the safety and efficacy of medical products (including drugs), assure the safe use of those products, and protect Americans, their pets, and their farm animals from poorly made, counterfeit, and illegal food, drugs, and cosmetics.

Pancreatic Neuroendocrine Cancer vs. Pancreatic Cancer

Thursday, October 13, 2011

Visionary innovator Steve Jobs, co-founder and former CEO of Apple Inc., passed away on October 5, 2011.   We join the many who are saddened by the loss and my thoughts and prayers go out to Steve’s loved ones. 

As a passionate advocate for patients with carcinoid cancer and pancreatic neuroendocrine cancer, I am concerned over all of the misinformation that’s been propagated about Steve Jobs’ cancer.

Steve Jobs was not diagnosed with pancreatic cancer in 2004. He was diagnosed with pancreatic neuroendocrine cancer. These cancers behave differently and the reports in the media describing his cancer as “pancreatic cancer” do a disservice to everyone working to build awareness and raise funds for research in pursuit of cures for pancreatic neuroendocrine cancer.

Patient Education Events from Coast to Coast

Friday, September 23, 2011

Having just returned from two Caring for Carcinoid Foundation Neuroendocrine Tumor Patient Education Events, I would like to share some common themes from the East and West Coasts.

1st World Congress on Ga-68 and Peptide Receptor Radionuclide Therapy (PRRNT)

Monday, May 2, 2011

The Caring for Carcinoid Foundation has always been committed to supporting patients by providing them with complete and up to date information regarding all potential treatment options. On our website and YouTube channel, Caring4Carcinoid, we provide information for patients seeking to learn more about peptide receptor radiotherapy (PRRT).

Most recently Dr. Richard Baum announced the 1^st World Congress on Ga-68 and Peptide Receptor Radionuclide Therapy.

FDA Advisory Panel Recommends Two Drugs for Patients with Pancreatic Neurendocrine Tumors

Wednesday, April 20, 2011

On Tuesday April 12, I had the honor of speaking on behalf of neuroendocrine cancer patients at an ODAC (Oncologic Drug Advisory Committee, an FDA advisory committee) hearing regarding two potential treatment options for pancreatic neuroendocrine tumor patients:

1) Afinitor (everolimus) tablets for treatment of patients with advanced neuroendocrine tumors of pancreatic origin;

2) Sutent (sunitinib malate) capsules for treatment of unresectable pancreatic neuroendocrine tumors.

The committee discussed everolimus in the morning and sunitinb in the afternoon. It was very informative to hear the discussion between the FDA, the trial sponsors (Novartis and Pfizer, respectively), and the sponsors' expert witnesses, which included several neuroendocrine tumor clinicians. 

Exciting Additions to CFCF Research

Tuesday, April 5, 2011

Today, I am delighted to announce that Andy Futreal Ph.D. has joined the Caring for Carcinoid Foundation’s Board of Scientific Advisors.

Dr. Futreal is co-founder and director of the Cancer Genome Project, and a senior investigator at the Wellcome Trust Sanger Institute.  Dr. Futreal's work has focused on the genetics of human cancer.  His accomplishments include identification of susceptibility genes for breast and ovarian cancers as well as identification of somatic mutations in melanoma, lung cancer, T-cell leukemias, and renal cancer.  Currently, Dr. Futreal’s work is focused on expanding characterization of cancer to whole genome sequencing and applying this information to impact cancer treatment.

Third Annual Los Angeles Neuroendocrine Tumor Patient Education Event

Wednesday, March 23, 2011

Last weekend was CFCF's third annual Los Angeles Neuroendocrine Tumor Patient Education Event, sponsored by the Oschin Cancer Center at Cedars Sinai and Amgen. This year's event was focused on helping neuroendocrine tumor patients evaluate clinical trials.  Also new this year was a patient panel to harness the knowledge that patients possess and give neuroendocrine cancer patients the opportunity to share their experiences with clinical trials.

LA Marathon 5k - Why do you run?

Saturday, March 19, 2011

This weekend marks CFCF's third annual Los Angeles Patient Education Conference.  The festivities consist of the LA Marathon 5k, a Neuroendocrine Tumor Clinical Trials Patient Education Seminar, a Friends of CFCF Dinner and the LA Marathon.

Rare Disease Day

Tuesday, March 1, 2011

The NIH estimates that 18-25 million Americans have a rare disease. In the United States, a disease is considered rare if it is believed to affect fewer than 200,000 Americans.  Some other countries and the European Union have similar but slightly different definitions. 

What does it mean, “to affect?”

By definition, to affect, means to act on or to produce a change in.  How many are truly affected by rare diseases? 

Neuroendocrine tumors have an estimated prevalence of ~105,000 patients in the United States.  From speaking with friends, families and caregivers of patients I know that this number greatly underestimates those affected by neuroendocrine tumors. 

In honor of rare disease day I am honored to share the words of both patients and their family members from CFCF’s Survivor Stories.