Caring for Carcinoid Foundation

Join Our Team!

2010-08-27T09:44:00.013-04:00

Time flies. I cannot believe I have completed THREE Swim Across America Boston Harbor Swims. Despite being a life long swimmer I had never set foot in an open water swim until my first Swim Across America (SAA) Boston Harbor Swim in 2008.

Like CFCF, SAA is a highly effective, driven, game-changing organization that empowers swimmers everywhere to join the war on cancer. The SAA Boston event is led by the charismatic and effective team of Janel Jorgenson and Kitty Tetrault. Janel was recently honored alongside CFCF’s Founder Nancy Lindholm at MGH’s One Hundred Event.

In 2008 I was so nervous - what goggles would I chose, would I be able to swim in a wetsuit, had I packed enough cloths to keep warm, would there be sharks, etc….? This year I was not the least bit concerned about goggles, wetsuit, sharks (ok, so maybe I was still nervous about the sharks…). Instead I was confident to face the 22 miles and whatever obstacles ahead with my teammates.

For me this year was special for another reason. Joining the event this year was a younger swimmer that I have coached for many years. After the event she enthusiastically reported, “ Not only was it an extremely fun team-bonding experience, but it made me realize that I can easily make a difference simply by doing something that I love. Hopefully I can do it again next year, and in a couple years partake in the Boston Harbor Swim.”

I have always been involved in team competitive swimming – growing up on an age group swim team, captaining the MIT Varsity team, coaching community swim teams. It is wonderful to be a part of a a different team – but like all teams, working together we can prevail. On this team I am joined by previous teammates: my husband Nick and his brother Nate, my college swim coach, and other friends but also NEW teammates and those that I have come to deeply admire and respect.

Ralph Berry has been doing SAA since 1997. On a boat filled with Olympians and swimming legends – Ralph is the one that commands the most respect. Ralph embodies Swim Across America. On competing in the 22 mile swim, Ralph was quoted saying "When I want to stop, I draw on the extra strength of all of those affected by cancer and of the kids that signed the swim cap. I feel super charged – I feel that power."

I am so proud to have joined the Swim Across America Team to eradicate cancer by doing something that I love.

Will you join our team? Join the Caring for Carcinoid Foundation by doing something that YOU love for the ones YOU love. Visit the CFCF website to find a event in your area.

I hope you all will post below the ways you are fighting for a cure!

Follow CFCF on twitter so you don’t miss an opportunity to join Team CFCF and fight for a cure.

2010 Neuroendocrine Research Symposium

2010-05-17T15:01:00.014-04:00

On Friday May 7th, the Caring for Carcinoid Foundation and the Raymond and Beverly Sackler Foundation hosted a Neuroendocrine Research Symposium sponsored by the VERTO Institute. The Symposium featured all of our funded scientists and was a forum where they could exchange ideas and discuss progress to a cure.

There was lively discussion throughout the day among attendees with broad expertise ranging from clinical drug development to genomics, and proteomics to basic science. Attendees joined from the United States, Canada, and Europe. There were many familiar faces in the room, and, as the field continues to expand, seeing all of the new faces was heartening. However, as many of you are very familiar, patients still face a relatively unknown disease for which there is no cure.

The Caring for Carcinoid Foundation and others continue to strive to change this reality for patients by funding breakthrough scientific research and by organizing meetings such as this one to facilitate collaboration. For me, one of the most exciting aspects of the meeting was the sharing of new, unpublished data and insights within the group of scientists. By sharing information like this, scientists are helping accelerate progress within the field.

A brief recap of the program:

- There were projects focusing on resource development, such as animal models and cell lines.
- There were projects focusing on understanding the genetic events driving neuroendocrine tumors, called genome sequencing projects.
- There were projects focusing on understanding genes and proteins expressed in neuroendocrine tumor cells that are not planned for in the DNA, called epigenetic projects.

These are all areas that the Caring for Carcinoid Foundation has been focused on developing since creation of our Research Road Map in 2005. A modified agenda from the Symposium can be viewed here. Please note there are some gaps in the program, since the early stage and unpublished science will not be posted publicly.

George Fisher, from Stanford Cancer Center and co-chair of the CFCF Scientific Advisory Board, started off the meeting describing emerging therapies for neuroendocrine tumors and the increasing number of clinical trial options for patients. Much of Dr. Fisher’s presentation is available here. Dr. Fisher describes emerging therapies for both carcinoid cancer and pancreatic neuroendocrine tumors: somatostatin analogs as anti-proliferative agents, angiogenesis inhibitors, mTOR inhibitors, cytotoxic therapy as well as other targeted agents. Among other things in his talk, Dr. Fisher described the rationale behind angiogenesis inhibitors. Dr. Fisher provided references for those interested in seeing the details of randomized trials in both carcinoid cancer and pancreatic neuroendocrine tumors.

The audience was able to see the progress being made in advancing agents such as sunitinib, sorafenib, and everolimus to phase III clinical trials. In addition, there are many drugs ongoing phase II trials with combinations of different therapies acting on different targets or pathways. These trials promise to improve tumor control as well as reduce side effects and toxicities. The large numbers of recently clinical trials, both existing and proposed, is a direct result of neuroendocrine tumor patients’ willingness to participate in the scientific advancement of the field. This is one way that patients have become active participants in advancing care and ultimately a cure. With many other types of cancers, delays in clinical trial accrual can be a problem or even impediment to progress.

With so many engaged patients, increasing pharmaceutical interest, and increasing numbers of institutions with active interest in caring for neuroendocrine tumor patients, this is a hopeful time for patients. Multiple projects are proceeding with the goal of uncovering the genetic underpinnings of BOTH carcinoid cancer and pancreatic neuroendocrine tumors. Multiple projects are examining what is functionally going on inside tumor cells both in terms of protein expression and methylation studies. Multiple investigators are working to establish cell lines and animal models. Progress in any area can inform and capitulate progress in the others.

Agoura Hills, Cedars-Sinai and on to Houston!

2010-04-12T12:48:00.020-04:00

On March 26, the Caring for Carcinoid Foundation held its second annual Patient Education Seminar at Cedars-Sinai in Los Angeles! What a great day – We kicked-off the morning with the Great Race of Agoura Hills. Despite the chaos at the start I was able to meet up with Team Foster and Team Kaatz. Don Foster and his brother were fast but thankfully we caught up with them before the event for a photo. I also met up with Alan Kaatz who led a 20+person team all walking in loving memory of Mary Kaatz. See below for more information on Mary Kaatz; to date this team has raised nearly $7,000 for cutting-edge research!http://www.firstgiving.com/livestrongmary

After spending the morning running up a mountain we headed over to Thalians Auditorium for the Second Annual Caring for Carcinoid Foundation / Cedars-Sinai Patient Education Seminar. The Seminar began with a tribute to the memory of Nickolette Way and Carol Young. Corri Ramirez, Nickolette's daughter, and Ed Meaney, Carol's husband, joined me as we dedicated the seminar. Please click here to see the tribute page for Nickolette Way, and click here for the tribute page for Carol Young.

The Seminar included talks from Edward Wolin, MD, Fe San Angel, RN, ONC; Steven Colquhoun, MD, FACS; and Marc Friedman, MD. Following the talks we added a novel component this year – three Interactive Multi-disciplinary Case Studies. These discussions included the speakers from above as well as Farin Amersi, MD, FACS; Run Yu, MD, PhD; and Simon Lo, MD. Dr. Wolin served as the moderator and really kept his team on their toes! It was enlightening to see how this group worked together to diagnosis and treat patients and a lot of nuances really came through.

We ended the day with an amazing guided meditation to the music of Giovanna Imbesi, http://www.generatepossibility.org/.

Patients – let me know what you think! Did you enjoy the case discussions? How can we improve upon the format for next year? Email me at Lauren.erb@caringforcarcinoid.org.

Houston Area Patients: its not too late to sign-up for CFCF’s second patient education event of 2010 at MD Anderson on April 30th. Visit our website for more information or to register: http://www.caringforcarcinoid.org/fundraising/Houston2010.asp.

The conference will include presentations, question and answer sessions and panel discussions all focused on providing patients with a comprehensive understanding of neuroendocrine tumor treatment options. Topics that will be covered are: Determining the Best Surgical Approach for Neuroendocrine Tumor Patients, Current and Upcoming Clinical Trials, Understanding Peptide Receptor Radionuclide Therapy (PRRT), the Role of Radioembolization and more!

Thanks to all of our Houston area patients that came out for the 2010 SCOPE Race - over 125 people joined our team captain, Jan Peine, to raise over $13,000 for MD Anderson's Participation in the Caring for Carcinoid Foundation Neuroendocrine Tumor Biobank.

I hope to see you there!

Caring for Carcinoid Second Annual Los Angeles Patient Event

2010-02-24T11:39:00.013-05:00

I can’t believe it has been almost a year since CFCF’s inaugural Awareness Weekend in Los Angeles consisting of a Patient Education Seminar, the Great Race of Agoura Hills and Gala Celebration at the House of Blues to raise money for CFCF’s Large-Scale Genome Study of Carcinoid Cancer.

Writing from our office in cold, snowy Boston I am looking forward to CFCF’s Second Annual Los Angeles Event. I hope to see many new faces this year as we open the day with a run/walk for a cure in the Great Race of Agoura Hills, then join together for an afternoon of education at Cedars-Sinai, and finally relax through guided mediation to music by Giovanna Imbesi, Generate Possibility.

Please see below for more information and email me at lauren.erb@caringforcarcinoid.org if you are interested in learning more or would like to register for the Great Race of Agoura Hills or our Patient Education Seminar.

Great Race of Agoura Hills

Agoura Hills, CA - March 27, 2010

We will begin the day with a run/walk through Agoura Hills to raise funds for research. The Sunflower, CFCF’s symbol, reflects CFCF’s mission to find a cure for carcinoid cancer. Like the sunflower we will turn to the sun for warmth and nourishment in pursuit of a cure. Join us for a day of camaraderie and sunshine as we support one another.

Los Angeles Neuroendocrine Tumor Patient Education Seminar Co-hosted by the Caring for Carcinoid Foundation and Cedars-Sinai Medical Center

Los Angeles, CA

In Los Angeles we will be again teaming up with Dr. Wolin and Cedars-Sinai for a day of Education and Question and Answer sessions where you the patient set the Agenda. I am particularly excited to introduce a novel patient case presentation element to the agenda. Dr. Wolin will lead two patient case discussions to highlight the intricacies of both treating and diagnosing neuroendocrine cancers and how a multidisciplinary approach is necessary by drawing on expertise from oncology, surgical oncology, radiology, endocrinology, gastroenterology, and more. Click here for more information on the Seminar and registration details.

Generate Possibility with Giovanna Imbesi

Los Angeles, CA

We will end the day with Generate Possibility: Guided meditation with Relaxing Music by Giovanna Imbesi. I am so grateful to Giovanna and Generate Possibility for collaborating with CFCF to end the day for participants on a relaxing note. We hope that everyone will leave feeling calm, empowered and hopeful for the future.

Please consider joining CFCF for an afternoon of education and taking action with us as we run/walk to a cure while enjoying camaraderie and fresh air. I for one am looking forward to it! Please email me with any questions or to join us, Lauren.erb@caringforcarcinoid.org.

Sunny Los Angeles here we come!

Swimming for Carcinoid Research

2009-07-24T14:16:00.011-04:00

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!

2009-04-16T12:56:00.012-04:00

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

2009-03-03T17:57:00.007-05:00

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!

2009-01-30T08:45:00.007-05:00

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:

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.
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.
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!

Conferences, Marathons, Golf Tournaments and More

2008-12-01T15:23:00.000-05:00

Thank you carcinoid and neuroendocrine tumor patients!

Over the past few months I have had the pleasure of meeting with many patients, family members, friends, physicians, golfers, runners, volunteers and other CFCF advocates. I have been overwhelmed by their enthusiasm, dedication and optimism. So many patients are empowered through the activity, information, education and support that CFCF provides. From the SEA4 Carcinoid Conference in LA to the New England Carcinoid Connection Conference outside of Boston, the feeling is consistent.

To date, some of my most memorable experiences have been:
• Working with Eva Donoghue to raise awareness and over $40,000 for research at the Chicago Marathon. Eva has been the foundation of Team CFCF Chicago for the past two years, and I had the amazing opportunity to cheer on our runners with Eva and many other members of her family, Eva’s “E-Team.”
• Meeting Kari Jones in Chicago and watching her brother Josh and his friend Clint run for a cure.
• Attending the 2nd Annual Cure Carcinoid Golf Tournament in honor of Bradford Monks. Meeting and having dinner with the dynamic group assembled in his honor to celebrate his memory and raise funds for a cure.

• Running in the Marine Corps Marathon with my husband, Nick, and my brother, Ryan. They have both been fantastic teammates and supporters of the Foundation. This was the second of many events in which we will complete together to pursue a cure.

In 2009, I hope to meet many more patients, family members, friends, caregivers and athletes. Please stay-tuned to CFCF’s website for our 2009 calendar of events or feel free to contact me. We can bring a CFCF event to your town. All money raised by Team CFCF in 2009 will fund the first even Large-Scale Genomic Study of Carcinoid!

Join us to find a cure.