Join Our Team!

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

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!

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

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!