The Neuroendocrine Cancer Awareness Network Newsletter • 2021 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 18 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 1500 free information packets, returned countless emails, and answered over 2,200 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.
And we couldn’t do any of it without you.
NCAN 2021 – “A Year in Review”
We are grateful to all who attended (in-person or virtually), sponsored, helped to organize, or donated to an NCAN event in 2021. You are the reason we were able to make a difference.
Highlights from 2021
• Since Q3 of 2020: NCAN held 8 virtual conferences, where 30 EXTRAORDINARY NET specialists spoke to an aggregate of 1000+ patients/caregivers in the audience.
• NCAN held 2 in-person galas where an EXTRAORDINARY group of patients, medical professionals, advocates and other friends of NCAN mobilized to support NCAN’s programs and to celebrate how their efforts and donations impacted NET patients.
• Dozens of live, as well as virtual chapter support group meetings were run by an EXTRAORDINARY group of NCAN Chapter Leaders across the country.
• Since Q4 2020: NCAN held 4 Support Group Leadership Seminars which helped bring these EXTRAORDINARY volunteers more information to help them continue support others with NETs.
• NCAN Participation in surveys, studies and NET research. In fact, with the help of EXTRAORDINARY donor support, NCAN has committed $80K to the research of Neuroendocrine Carcinoma.
• A Volleyball Game NET Awareness Fundraiser, held by some EXTRAORDINARY people at Dakota Ridge High School in Colorado in honor of one of their own.
• The annual “Strides for Stripes” Zebra Walk had over 225 participants who recruited an EXTRAORDINARY 560 sponsors, thus beating our $50,000 fundraising goal by about $10,000 and flooding social media with NET cancer day photos.
Highlights for 2022
• National conference will be held on NET Cancer day. We have a few surprises in store for everyone attending. Registration will open in February!
• Starting in January we will be holding a series of 4 Virtual NET Patient programs in Spanish.
• Virtual Chapter meetings every 2nd Saturday (in different time zones), for those who cannot get to a local support group meeting. Check the website for details.
• We will continue to have our many NCAN State and NCAN National FaceBook Support pages. If you are not sure how to find them check out our website under links.
Remember that NCAN is always just a phone call away and that we are the only NET Foundation that has a patient or a caregiver that answers the phone 365 days a year 9 am to 9 pm ET. 866-850-9555
Top-Rated Non-Profit For 11 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
What a year! Despite all the insanity of Covid, we were able to get a lot done this past year. We are so proud of the work that we do here at NCAN. 18 years later we are still going strong. I am always being reminded of the importance of what we do and the healing power or our NET community. NCAN will continue to promote self – advocacy, educate and bring awareness to this disease.
Thank you to our sponsors, speakers, supporters, chapter leaders, board members and each and every one of you. We cannot do this alone. Remember together we are making a difference and are ZEBRA STRONG!
NET Patient Virtual Conference
February 13th
This year’s first event was held virtually due to continued Covid restrictions. The NCAN virtual conference platform included the same level of education, care, and support that you would find at our in-person meetings, only from the safety and comfort of your own home. These conferences were virtual, but live in real-time (including Q & A with our speakers) which also allowed for socializing between conference-goers, sponsors, and vendors.
On February 13th, Dr Amr Mohamad, Dr. Mary Maluccio, Dr. Jaydira Del Rivero, Dr. Aman Chauhan, and Dr. Del Rivero were our esteemed guests discussing topics such as “Medical Management of NETs”, “Surgical Options for NET Patients”, “Clinical Trials for NETs”, “The Importance of an Interdisciplinary Team in Treating Your Neuroendocrine Tumor”, and more. We were unable to be in the same room together but the sharing of information was epic.
Chapter Support Group Virtual Leadership Meeting
March 13th
This year our chapter support group leaders came together from all over the U.S. virtually with one common goal: how to offer support to other patients and caregivers in the most effective way. This webinar focused on a “Team Approach to Leadership”. The discussions and exercises were led by Jacob Goldstein from The Leadership Lab. We explored concepts like, “Synergy- The Whole is Greater than the Sum of its Parts”, and “Change, Agility and Resilience”, all in the pursuit of becoming better at what we do. Supporting the NET community.
NCAN has many Chapter 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.
NET Patient Virtual Conference
April 10th
Dr. Rodney Pommier, Dr. Marcelo Guimares, Dr Aman Chauhan, and Dr. Jason Starr joined us virtually to discuss topics such as, An Overview of NETs, Treatments for Neuroendocrine, and Surgical Options for NET Patients. After closing remarks, patients gathered in the “Zebra Lounge” for networking and Chats for Lung NETs, PNETs, GI NETs, PRRT, The Newly Diagnosed, and Caregivers. There was an NCAN Hospitality Booth where attendees could join a chapter group, purchase Zebra Items, meet Chapter Leaders, get free info downloads, or just hang out and meet other zebras. There was also the opportunity to meet and speak with all of our generous sponsors.
NET Patient Virtual Conference
May 8th
Dr. Satya Das, Dr. Aman Chauhan, Dr. Herb Chen, and Dr. Bart Rose joined us virtually to discuss topics such as Treatments and clinical trials for Neuroendocrine, Surgical Options for NET Patients, and Updates on PRRT. Rachel C. Miller, MS, RD, LD, joined to discuss the “Best Diet Options for Neuroendocrine Patients”. We spent the day together learning and sharing while making connections with old friends through the wonders of technology. After closing remarks, patients again gathered in the “Zebra Lounge” for networking and Chats for Lung NETs, PNETs, GI NETs, PRRT, The Newly Diagnosed, and Caregivers. There was an NCAN Hospitality Booth where attendees could join a chapter group, purchase Zebra Items, meet Chapter Leaders, get free info downloads, or just hang out and meet other zebras.
Raleigh Zebra Gala 2019 – Raleigh, NC
August 7th
Our second Raleigh, NC Zebra Gala was a long time coming with a lot of rescheduled dates! It was organized by Wendy Knoll, and held at the Crabtree Marriott. We’re so proud to say, it was a huge success! There was free flowing beer, wine, and soft drinks, hors d’oeuvres, plated Cuban inspired dinner and dessert, dancing and a DJ. We were able to raise our glasses to life, not only to celebrate and raise funds to fight Neuroendocrine Cancer, but to celebrate life itself and everything we have been through lately.
With masks and social distancing we were able to celebrate while keeping everyone safe.
2021 National Patient Conference
September 30th – October 2nd
After 2 years of preparing for the National NET Patient conference we made the difficult decision to postpone, once again, until 2020.
The safety of our patients, caregivers, medical professionals, sponsors and volunteers is always our first priority, as we consider you all friends and family.
As we all know, great things happen when the NET community comes together. And we are looking forward to that magic happening when we get together November 10th -13th 2022 in Atlanta. We have a wonderful agenda planned with something for everyone. 10+ Leading Industry Vendors, 20+ Expert NET Doctors, and New Treatment Therapies. And it’s not all work, there will be plenty of opportunity for fabulous food and fun! Save-the-date, you are not going to want to miss this!
2021 Dakota Ridge High School Volleyball Game
October 10th
The efforts of some amazing people at Dakota Ridge High School in Colorado, where they held a Volleyball Game NET Awareness Fundraiser.
Every year they hold a charity event to raise funds for a specific cancer awareness program – a cancer that has affected someone in their volleyball family. It’s a huge night for them, with a typical crowd of over 200 people (with a silent auction event tee shirts, etc.). We were grateful to be selected this year’s honoree organization. Incredibly, they raised close to $4000. And there were about 500 people with NET Cancer Awareness T-Shirts in the crowd for this year’s event!
NCAN Partners with CURE Magazine
We are really excited about our new partnership with CURE Magazine. CURE provides access to the cancer news, latest oncology research & expert insights that serve as a guide to every stage of the cancer experience. Partnering with them allows us to reach and help as many Neuroendocrine cancer patients as possible.
12th Annual “NET Cancer Awareness” Day
November 10th
Our It has been eleven years since the first Worldwide NET Cancer Awareness Day came to be and there has been a LOT of innovation and change in the way patients are treated.
Some of today’s best and brightest NET experts joined us for TWO virtual events where patient and caregiver’s questions were answered and topics discussed on how to endeavor to create a healthier world for all NET patients.
A Virtual Event 1: Vanderbilt University’s NET Experts Answer Questions from NET Patients.
November 10th
Our afternoon meeting was a collaboration with Vanderbilt University and NCAN Tennessee. Robert Ramirez, DO, and Satya Das, MD, MSCI from Vanderbilt University, answered attendees questions. It was an opportunity to listen and learn, in real-time, how leaders and innovators view the diagnosis and treatment of neuroendocrine cancer. Special thanks to our TN chapter leaders, Anne Dabbs and Paul Hurt for helping to arrange this information packed afternoon.
A Virtual Event 2: What Should You Be Doing? NET Experts Answer Questions from NET Patients.
November 10th
Dr. Aman Chauhan, Dr. Jaydira Del Rivero and Dr. Eric Liu answered questions from attendees as well as some of the topics they are passionate about. Our very own Steve Mazan did and incredible job being the host and moderator for this event.
6th Annual Virtual “Strides for Stripes” Zebra Walk
November – December
The annual Strides for Stripes Zebra Walk had over 225 participants who recruited an extraordinary 560 sponsors, thus beating our $50,000 fundraising goal by about $10,000 and flooding social media with NET cancer day photos. What a windfall for awareness of NETs! We are so grateful for each and every walker and sponsor.
17th Annual Celebration of Life Gala
November 19th
This year’s 17th Annual Celebration of Life Gala was an in-person event, 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, photo booth and 100+ raffles. Dr. Aman Chauhan was the 2021 recipient of the Above and Beyond Award for his extraordinary work with NET patients. Hank Mulligan was Honorary Chair Funds raised at the Gala will benefit the entire neuroendocrine cancer community and help us get one step closer to a cure.
Dr. Aman Chauhan receiving the 2021 Above and Beyond Award.
Chapter Support Leadership Council
December 4th
Once again, our chapter leaders came together virtually to discuss plans for making our Chapter support Groups better than ever in 2022.
Their tireless commitment to supporting NET patients and their families is always an inspiration.
Check our website often for updates on all upcoming NCAN events
and ways to stay involved.
If you have a great idea for a fundraiser you’d like to run,
don’t hesitate to contact us.
2022
JANUARY
Eastern Time Zone
Virtual Chapter Meeting
Saturday, January 8th
9AM – 11AM ET
FEBRUARY
Central Time Zone
Virtual Chapter Meeting
Saturday, Feb. 12th
9AM – 11AM CT
MARCH
Pacific Time Zone
Virtual Chapter Meeting
Saturday, March 12th
9AM – 11AM PT
APRIL
Eastern Time Zone
Virtual Chapter Meeting
Saturday, April 9th
9AM – 11AM ET
NET Patient Conference Lexington KY TBA
NET Virtual Presentation in Spanish TBA
MAY
Central Time Zone
Virtual Chapter Meeting
Saturday, May 14th
9AM – 11AM CT
JUNE
Pacific Time Zone
Virtual Chapter Meeting
Saturday, June 11th
9AM – 11AM PT
JULY
Eastern Time Zone
Virtual Chapter Meeting
Saturday, July 9th
9AM to 11AM ET
NET Virtual Presentation in Spanish TBA
AUGUST
Central Time Zone
Virtual Chapter Meeting
Saturday, August 13th
9AM – 11AM CT
SEPTEMBER
Pacific Time Zone
Virtual Chapter Meeting
Saturday, Sept. 10th
9AM – 11AM PT
OCTOBER
Virtual Zebra Walks October to December
Eastern Time Zone
Virtual Chapter Meeting
Saturday, October 8th
9AM – 11AM ET
NOVEMBER
Eastern Time Zone
Celebration of Life Gala
Saturday, November 19th
6PM – 11PM ET
DECEMBER
Virtual Zebra Walks
Pacific Time Zone
Virtual Chapter Meeting
Saturday, Dec. 10th
9AM – 11AM PT
Thank you to the people who helped make it all happen in 2021.
We are grateful for your continued friendship and support.
If you’d like to help support the NET Cancer community with an end of the year DONATION it will be matched up to $10,000!
Visit us at netcancerawareness.org where you can easily request an info packet, register for an event, join a support group, or shop in the Zebra Store.
