Swimming for Carcinoid Research

Last Friday, I participated in the Swim Across America Boston Harbor Islands Swim to raise money for CFCF’s large-scale genome study of carcinoid. I was fortunate to swim alongside a very special group of recreational, masters and Olympic swimmers who had all taken off a day from work to raise funds for cancer research. Each team swam in relay fashion from Rowes Wharf in downtown Boston out to the Boston Harbor Islands and back.

A day in the sun with such a tremendous group of individuals made swimming in the harbor bearable! I am so honored the CFCF is partnering with an innovative organization like Swim Across America as we work to achieve our mutual goals or raising money and awareness for cancer research, prevention and treatment. The hard work and efforts of everyone who participated paid off. In total, Swim Across America raised over $250,000. Team CFCF raised over $10,000 for the large-scale genome study of carcinoid tumors led by Dr Matthew Meyerson. I know that everyone was pleased with our achievements, especially in these tough economic times.

The first time I jumped in, the water felt icy cold and I could barely breath, thinking that I would never make it all day. It was eerily calm on the water, like swimming in a lake on a cool (or COLD) spring morning. As we swam, currents went from hot to cold and back. Just when I found myself getting into a comfortable grove, we would swim into a freezing cold patch.

While on the boat I had a lot of time to discuss the Caring for Carcinoid Foundation and our life-saving mission with other swimmers. I was excited to discuss the progress already achieved by our funded-scientists and was looking forward to our upcoming patient Awareness Weekend this September 12-13th in Boston, MA.

We will kick off Awareness Weekend with a patient education conference. At this conference, CFCF’s funded researchers will be coming together for the first time to speak to patients, donors and other interested parties to discuss the progress they are achieving and what work needs to be done to find a cure. At this time, Dr. Meyerson, Dr. Kulke, Dr. Shivdasani, Dr. Leiter and Dr. Choi are all confirmed guests!

After this informative session with our researchers, we will move onto the hip and luxurious members only Foundation Room at House of Blues, Boston. There we will host the first ever Boston Benefit for Carcinoid in order to raise money for a cure. All money raised at this event will fund Dr. Meyerson’s large-scale genome study of carcinoid.

I am also very pleased to announce that the Raymond and Beverly Sackler Fund for the Arts and Sciences will match all money raised on September 12th at the Boston Benefit! Even though the Patient Education Day is targeted primarily for patients and their families, I hope that others will join us for the afternoon sessions to learn about our funded researchers’ scientific work.

Please visit our website or call (617) 848-3977 for more information on this weekend; I hope to see you there!

Awareness Weekend
On March 28 and 29, the Caring for Carcinoid Foundation held its first "Awareness Weekend" in Los Angeles, CA.

The weekend began with the Great Race of Agoura Hills where over 40 patients, friends and family members ran to a cure. I ran the 10k and learned that the race was appropriately named the Great Race of AGOURA HILLS! When they said Hills they were not joking around.

Afterwards, we celebrated at the Post Race Party where Fred Herlitz of the MTH Foundation presented CFCF with a check for $50,000 for the Mary Terese Hartzheim Award for Neuroendocrine Tumor Research. Over $21,000 was raised for research; click here to see Team CFCF in Action and here to read about Shari and Rachel House who traveled from Portland, OR to participate!

Next came the celebration in the Foundation Room at the House of Blues. Entertainment was provided by sleight of hand, John Carney and indie rock band, The States. It was terrific to be able to meet so many patients and their families and relax in a fun, festive environment!

The weekend concluded with CFCF's Patient Education Day at Cedars-Sinai Medical Center. We thank Dr. Wolin and Cedars-Sinai for their hospitality. Leading experts including: Rachel Beller, RD, Jean Botha, MD, George Fisher, MD, PhD, Greg Fitzke, MD, Nirmala Hidalgo, MD, Pamela Kunz, MD, Matthew Meyerson, MD, PhD, Jodi Newson, MS, RD, Joseph Pisegna, MD, Edward Wolin, MD, and Michael Zaruba, MD presented the latest advances and answered patient's questions in a panel moderated by Nancy Lindholm O'Hagan, CFCF's Founder and President.

CFCF Director Carrie Host presented her experience as a metastatic carcinoid patient and gave a sneak preview of her book, Between Me and the River. I have been lucky enough to receive an advance copy of Carrie's book and read it cover to cover. I highly recommend it not only for patients but for their friends, families and loved ones as well. It is a story of love and triumph that should not be missed.

We are grateful to Nickolette Way, Jan Naritomi-Hart, Hana Hraebec-Snyder and the many experts, volunteers and sponsors that made this weekend possible. If you are interested in receiving a copy of the program and DVD from the weekend please email Ben. To see pictures of the weekend please visit the Great Race of Agoura Hills photo gallery.

We are hard at work planning our second patient conference for 2009. We hope you will all join us September 12th and 13th in Boston, MA. The weekend will conclude with the DFCI Jimmy Fund Walk on Sunday September 13th where all proceeds will go towards Dr. Meyerson's large-scale genome study of carcinoid. To sign-up please visit Team CFCF's page and be sure to join Team Caring for Carcinoid Foundation.

Please write to me and let me know what topics you would like covered in Boston - lauren.erb@caringforcarcinoid.org

Atlanta: From MACAG to Molly's wedding

This past weekend I had the honor of being a bridesmaid in my oldest friend Molly’s wedding. My husband and I traveled to Atlanta, for a weekend of wedding festivities and reconnecting with friends.

On Saturday morning, rather than getting my hair and make up done with the rest of the bridesmaids, I was able to attend the MACAG support group meeting at the Wellness-Community, Atlanta Northside. It was such an honor to be able to speak with patients and their caregivers as part of a regularly scheduled meeting and it was a wonderful coincidence that the group was meeting the same weekend that I would be in Atlanta. I hope to travel to more and more support groups as the year goes on. Email me today, lauren.erb@caringforcarcinoid.org, and suggest support groups for me to visit!

I was struck by the conviction and dedication that each member of the group had. It was inspirational to see so many people come together and support one another. People offered their own experiences and information to inform each of the other attendees. I found the meeting to be very informative for me as I sought to gain a better understanding of the types of questions and the treatment developments that mattered most to this group. I am very grateful to the patients and caregivers that opened up and shared their experiences with me.

It was great for me to see that this group was truly taking ownership of their treatment. It was clear that they were asking the tough questions and demanding answers and accountability from their physicians. This was not a group that was sitting by the way side. Rather this was an extremely dynamic group of patients drawing upon the experience of experts from Boston to Texas to international locations.

We spoke about one of CFCF’s exciting new research projects, The Caring for Carcinoid Foundation Neuroendocrine Tumor Bioconsortium, and how this project will enable scientists to characterize specific disease pathways, uncover genetic and environmental indicators of disease, identify novel drug targets and tailor treatment programs to the needs of patients. The collaboration will link the biobanks at Dana-Farber Cancer Institute (MA), MD Anderson (TX), MGH (MA), Memorial Sloan Kettering Cancer Center (NY), and Stanford (CA). It was alarming to learn that two of patients also had a family member diagnosed with a related NET. This highlights the need for further research linking tissue samples with patient information in order to track down the mutations that lead to NETs. Scientists can eventually identify if these mutations are hereditary or sporadic.

We spoke about treatment options that may improve patient quality of life and the promise of studies like a recent MGMT study. This study suggests that subgroups of patients with specific genetic mutations respond to certain therapies. This study offers bold hope for the future of targeted therapies.

MGMT is a DNA repair enzyme that is often overexpressed in certain cancers. In this study, Dr. Kulke and his team report that pancreatic neuroendocrine tumors which were deficient in MGMT were sensitive to temozolomide-based therapy.

To read the article from "Clinical Cancer Research" click here.
To learn more about this treatment option, please call us at 857-222-5492.

Investing in Research: Good for Patients, Good for the Economy, Good for America!

Government-sponsored research is critically important to our modern economy. According to a report compiled by Families USA, a national healthcare advocacy group, the NIH awarded approximately $22.8 billion in 2007 to universities and research organizations in the 50 states. These awards created a multiplier effect, resulting in over $50 billion in new business and economic activity throughout the US. According to the report, “In fiscal year 2007, every $1 million that NIH invested generated $2.21 million in new state business activity.”

Click here to read more about how research investment spurs state economic growth through the “multiplier effect.”

Research!America is urging Congress to include an additional $11.1 billion for research in the economic recovery package. This includes an additional $8.6 billion in funding for NIH and represents nearly a 30% increase over the current allocation. In 2008, the NIH budget was $29.2 billion. While this is a considerable sum, it is actually a decrease from the funding levels of 2007 when inflation is taken into account. Consequently, additional research is needed more than ever to make up for recent deficiencies.

Based on the multiplier effect described by the Families USA report, an incremental $8.6 billion in NIH research would create over $16B in economic growth at the state level, with benefits including:

1. The continuation and completion of current research projects and the initiation of much needed research projects that were not funded because funding has not kept pace with inflation in recent years.
   
2. Improved patient care based on research that improves treatment options and generates strategies for prevention. This, in turn, can provide further cost savings through prevention programs, and decrease long-term care costs.
3. Economic stimulus that creates high-tech, medical-related jobs, resulting in sustainable economic growth that will pay dividends far into the future.

The Caring for Carcinoid Foundation supports the allocation of additional research funding and its overall positive impact on patients and the economy. CFCF is proud to be a member and strong supporter of Research!America. CFCF was the first Carcinoid/NET non-profit foundation to join Research!America, which is leading the way in making our voices heard in Congress.

In these tough economic times, CFCF’s role in driving scientific discovery becomes even more critical. In addition to driving scientific progress and a better future for patients, CFCF’s research investment has the added impact of providing economic stimulus to the economy. By investing in the Caring for Carcinoid Foundation and supporting leading researchers, your dollars have the added impact of providing economic stimulus to our national economy!