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The Neuroendocrine Cancer Awareness Network Newsletter • 2019 Edition

“Everyone has inside of him a piece of good news. The good news is that you don’t know how great you can be. How much you can love. What you can accomplish. And what your potential is.”

— ANNE FRANK

MAKING A DIFFERENCE
EVERY DAY

Effecting change in the world of non-profit requires equal parts passion, dedication, and putting in relentless hours. For the past 16 years we, at the Neuroendocrine Cancer Network (NCAN), have been busy making a difference by:

• raising awareness of Neuroendocrine cancer
• supporting those with NETs along with their caregivers
• funding NET research

This past year, we mailed out more than 1300 free information packets, returned countless emails, and answered over 2,000 calls to our hotline, which is manned from 9AM to 9PM every day of the year by a patient or a caregiver. You see, it matters that the person answering a hotline call has first-hand knowledge of NET cancer.

NCAN 2019 – “A Year in Review”

We are grateful to all who attended, sponsored, helped to organize, or donated to an NCAN event in 2019. You are the reason we were able to make a difference.

Top-Rated Non-Profit For 9 Years In A Row!

NCAN has once again been awarded top rated nonprofit organization status. It’s an award bestowed upon us by the community, and we’re proud to say that we’ve been honored with this award every year since 2011.

A Note From Maryann

This was a difficult year. We lost family members, two of our long time board members, and I had major surgery. Thank you for the prayers, calls, sympathy, well-wishes, and all the endless support from you, our NCAN Family. As I continue to heal I am reminded of the importance of what we do at NCAN and the healing power of our NET community. NCAN will continue to promote self-advocacy, educate, and bring awareness to this disease. Remember, we are never alone on this journey. WE ARE ZEBRA STRONG!

NET Patient Conference – Charleston, SC

March 2nd

Held at Crowne Plaza Charleston Airport Convention Center, this year’s Carolina NET Patient Conference was a sold-out event. Dr. Salvatore Borges of Duke University, Dr. Yi-Zarn Wang of Baylor, and Dr. Marcelo Guimaraes, were our esteemed guests discussing topics such as interventional radiology, treatment options for liver metastases, patient advocacy, helping caregivers cope, diagnostic scans and peptide receptor radionuclide therapy (PRRT) for NET patients, and more.

Zebra Gala 2019 – Raleigh, NC

March 15th

The very first Raleigh, NC Zebra Gala was held at the IMAX theatre and we’re proud to say, it was a huge success! It was originally scheduled in September until hurricane Florence came the very same day. Yet, as we so often do in life, we went with the flow and rescheduled. At the gala we heard speeches from Cal Fussman, world-renowned journalist and author, and patients Wendy Knoll and Maryann Wahmann. We had over 200 guests from all over the world as well as many members of the Raleigh community. We even had a star from Animal Planet’s The Vet Life, Dr. Aubrey Ross.

Many influential doctors in the NET community, like Dr. Salvador Borges joined us for this celebration of life! A delectable dinner was catered by CateringWorks while we sipped on zebra champagne, bid on items for the silent auction, and danced the night away. It was the talk of the town and we know many more people became aware of what Neuroendocrine Cancer is and what we can do to continue to spread awareness. We are excited to say the 2020 Raleigh Zebra Gala will be held on March 21st.

Come Celebrate With Us!

Chapter Leader Summit – Charlotte, NC

March 22nd – March 24th

This year our chapter support group leaders came together from all over the U.S. with one common goal: how to offer support to other patients and caregivers in the most effective way. It was a weekend full of team-building exercises, information exchanges, and just plain fun! (There was even a smoked turkey involved!)

There are currently 26 Support groups nationwide. They’re a safe, confidential place to talk openly and to exchange ideas about the challenges of living with NETs. Join one of our Chapters today. If there isn’t an NCAN chapter support group in your area, consider starting one.

Apply Online.

NET Patient Conference – Tulsa, OK

April 13th

The Tulsa NET Patient Conference was held at Stoney Creek Conference Center. It was a day of presentations featuring Dr. Lowell Anthony of the University of Kentucky, Dr. Yi-Zarn Wang of Baylor, Dr. Joseph Dillon of the University of Iowa, and Leigh-Anne Burns, MS, LDN, RD. These experts in Neuroendocrine cancer presented information designed to ensure that patients and caregivers are able to make informed decisions to get the best treatment possible in their fight against Neuroendocrine cancer. It was the perfect opportunity to build their knowledge to become better advocates for their health.

NET Patient Conference – Alexandria, VA

May 4th

Our Virginia conference was held at the Crowne Plaza Old Town Alexandria. Dr. Ed Wolin and Dr. Jerome Zacks of Mt. Sinai Medical Center in NY, Dr. Marybeth Hughes of Eastern Virginia Medial School, Dr. Aman Chauhan of the UK Markey Cancer Center and Dr. Jaydira Del Rivero of National Cancer Institute all came together to share life-changing information with participants. The Bea Lehming Memorial Lecture was delivered by Dr. Jerome Zacks and Dr. Jaydira Del Rivero.

4th Annual
World Pancreatic Cancer Coalition – Coral Gables, FL

May 7th – May 9th

This year, we attended the largest international gathering of pancreatic cancer patient advocacy groups which was held in Coral Gabbles, FL. This inspiring meeting was focused on creating real change for patients with all types of pancreatic cancer, including pancreatic neuroendocrine tumors (PNETs). Our days were packed with discussions and presentations highlighting topics including science, research, patient support, clinical trials, and raising awareness: all important areas for tackling pancreatic cancer on a global scale. Another example of how we can make a difference when we work together.

Zebra VIP
FaceBook Group

July 8th

This July we launched our new Zebra VIP FaceBook Shopping Page. Join for EXCLUSIVE limited addition Zebra Items and Special Zebra Store promotions. Run by the fabulous Casey Arnett Lewis, it’s a fun way to Get Your Zebra On and to help raise awareness!

NET Patient Conference – Nashville, TN

September 14th

Our Nashville conference was held at the Radisson Hotel featuring Dr. Satya Das, Dr. Eric Liu, Dr. Lowell Anthony, Leigh Anne Burns, MS, LDN, RD, and Dr. Renuka Iyer. Some of the topics discussed were self advocacy, surgical options, clinical trials, diet concerns, controlling serotonin, and shared tissue banks. Information was shared and friendships were made.

NETsTalk –
The NCAN Blog

October 2019

Write On, Anne!
Anne Dabbs has taken over the NCAN Blog! As a NET Patient and NCAN Chapter Support Group Leader, she brings a unique perspective to NETs related issues. Her positive thinking, inspiring wisdom, and healing sense of humor are inspiring others to take on a “ Living with NETs Cancer, Not dying from it” mindset. We are lucky to have her and look forward to her monthly posts.

Check out NETsTalk.

Launch of
Inspiration Corner

October 2019

In October of this year, we launched the new and improved version of Inspiration Corner on our website. It’s a place to go to find and share inspirational quotes. There are currently 250+ quotes to choose from and we are adding more every day. So grab a cup of coffee and go get inspired!

11th Annual
Strides for Stripes – Long Island, NY

October 19th

Patients, family, and friends from the tri-state area gathered in Eisenhower Park, East Meadow, NY to help shine a light on NETS. It was a beautiful fall day and Zippy the Zebra was there in full stripes. A great time was had by all.

4th Annual
Strides for Stripes – Charlotte, NC

November 4th

Patients, family, friends, and physicians from North and South Carolina gathered at Latta Park, Charlotte, NC for the 4th Annual Carolina ‘Strides for Stripes’ Zebra Walk. Exercise and lunch were had by all, and the money raised will help support the NET Community. Win, win, win!

16th Annual
Celebration of Life Gala

November 9th

This year’s 16th Annual Celebration of Life Gala was held at The Sterling in Bethpage, NY. It was a fun evening celebrating life. Dinner and cocktails were served. There was also dancing, a silent auction, and 100+ raffles. Dr. Lowell Anthony was the 2019 recipient of the Above and Beyond Award for his extraordinary work with NET patients. Judy San Roman was Honorary Chair and a special Above and Beyond award was presented to the family of Thomas DeFrancisci in honor of Tom’s selfless work for the NET community over the years.

Funds raised at the Gala will benefit the entire neuroendocrine cancer community and help us get one step closer to a cure.

Dr. Lowell Anthony receiving the 2019 Above and Beyond Award.

The DeFrancisci family receiving a special Above and Beyond Award.

12th Annual
“NET Cancer Awareness” Day

November 10th

This year chapter support groups across the country held events to help raise awareness for Neuroendocrine Cancer.

TN Chapter Support Group getting their zebra on for NET Cancer Awareness Day.

NET Patient Conference – West Palm Beach, FL

December 7th

Our final conference of the year was held at the Airport Hilton in beautiful West Palm Beach, Florida. Attendees spent the day with Dr. Jonathan Strosberg, Dr. Yi-Zarn Wang, Dr. Lowell Anthony, and Leigh Anne Burns, MS, LDN, RD getting information about the best treatments available in the fight against neuroendocrine cancer.