NCAN Nwsltr 2022 Edition

The Neuroendocrine Cancer Awareness Network Newsletter • 2022 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 19 years we, at the Neuroendocrine Cancer Awareness Network (NCAN), have been busy making a difference and this year was no different!

NCAN 2022 – “The Year in Review”

Top-Rated Non-Profit For 12 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.

• Raised awareness of neuroendocrine cancer via our many outreach, education and support programs
• NCAN works with leading NET institutions and funds NET research
• Over 500 patients came to FOUR Regional In-person Conferences
• A triumphant return to the in-person National NET Patient Conference with over 325 attendees
• Monthly Virtual Support Group Meetings shared vital information from leading NET experts & brought patients together to talk about their experiences
• At NCAN Support Group Leadership summits, leaders in the NET community collaborated to better understand and serve NET patients
• Patients got great information and ideas from the NETS TALK BLOG
• Leading NET specialists including doctors, advocates, caregivers and patients spoke on the BI-WEEKLY NETS GET REAL PODCAST reaching thousands of NET patients and caregivers
• Uploaded over 65 NEW videos of NET EXPERTS to our YouTube Channel bringing the total of expert videos to 350+
• Growing presence on Facebook, Twitter, Instagram and Linkedin brought thousands of patients and caregivers together

This past year, we mailed out more than 1500 free information packets, returned countless emails, and answered over 2,200 calls (average 30 – 40 minutes each) 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 this without YOU.

NCAN will celebrate 20 years of service in 2023!

A heartfelt thank-you to everyone who attended (in-person or virtually), sponsored, helped to organize, or donated to an NCAN event in 2022. TOGETHER we make a difference.

Most of our funding comes from generous private donations.
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.

Please go to our website or mail a check to:
NCAN in 3074 Brookchase Blvd Fort Mill, SC 29707
Call the office at 866.850.9555

Thank you in advance.

Highlights from 2022

THE NATIONAL PATIENT CONFERENCE
Three years of waiting was worth it!
• November 10-12 Atlanta, GA-
National NET Cancer Patient Conference

FOUR LIVE IN-PERSON REGIONAL PATIENT CONFERENCES
• April 24- Lexington KY NET Cancer Patient Conference
• May 14- Charlotte NC NET Cancer Patient Conference
• June 25- Rochester MI NET Cancer Patient Conference
• October 15- Long Island NY NET Cancer Patient Conference

• On November 19th, NCAN held the 19th annual ‘Celebration of Life’ Gala on Long Island, NY 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.

• NCAN Support Group Meetings
Live, as well as virtual NCAN support group meetings were run by a PASSIONATE and DEDICATED group of NCAN Group Leaders across the country.

• Virtual NET Patient Seminars in Spanish

• NCAN Support Group Leadership Programs
• May 13-15 -Charlotte NC
In-person Support Group Leadership Summit
• November 13 -Atlanta GA
Support Group Leadership Meeting which helped bring these EXTRAORDINARY volunteers more information to help them continue support others with NETs.

• NCAN Participation in surveys, studies and NET research.

Upcoming Events for 2023

Regional Conferences- An Exceptional Patient Experience

Regional conferences are one day, 5 speaker programs held in various locations, giving patients and their families from the surrounding area access to NET experts and networking with other NET patients.

• 2023-03-11 -Silver Springs, Maryland Patient Conference

• 2023-04-15 -Omaha, Nebraska Patient Conference

• 2023-06-03 -San Diego, California Patient Conference

• 2023-09-09 -Cleveland, Ohio Patient Conference

• 2023-10-21 -Miami, Florida Patient Conference

NCAN Support Group Leadership Training and Symposiums.

The program’s goal is to help volunteer, self-help NET support group leaders run a support group.

• First Quarter- NCAN Virtual Support Group Leader Summit

• 2023-10-20 to 22 -Miami NCAN Support Group Leader Summit

Monthly Podcasts & Livestreaming Events

-Two podcasts each month provide a lot of opportunities to meet the NET specialists, innovators and other unique personalities who strive to make life better for neuroendocrine cancer patients.

-There will also be a quarterly webinar in Spanish!

Monthly Virtual NCAN Support Group meetings

Includes a livestream expert presentation, a question-and-answer session and breakouts for peer-to-peer (patients and caregivers) discussion. They will be held 12 pm ET on the following Saturdays:

Jan 14, Feb 11, April 8, May 13, June 10, July 8, Aug 12, Oct 14 and Dec 9

Patient Information and Outreach

When someone is diagnosed, or has a new question, where can they go to get the answer in a short period of time? NCAN’s patient hotline, website, free information packs, Facebook, YouTube page, etc. help fill this need.

Other Awareness Events:

• 2023-08-19 -Raleigh Gala

• 2023 Oct – Dec -Strides for Stripes Walks

• 2023-11-10 -NET Cancer Awareness Day

• 2023-11-11 -LI Gala

• 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 “Info & Online Support”.

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

November 10-12 2022 National NET Cancer Patient Conference

After 3 years of prepping for the National NET Patient Conference it finally happened! And it started on November 10, NET Cancer Day!

Dr. Mary Maluccio from @theRealNOLANETS was presented with an ‘Above and Beyond Award’ for her outstanding work with neuroendocrine cancer patients. Pamela Gaytan, a Nurse Educator with TerSera, also received an ‘Above and Beyond Award’ for her tireless work with an NET patients over the years.

As we all know, great things happen when the NET community comes together and the National Conference was no exception.

The excellent speakers and top notch talks on the agenda had something for everyone. 10+ Leading Industry Vendors, 20+ Expert NET Doctors, and New Treatment Therapies.

Of course it wasn’t all work, there was plenty of networking, entertainment and fabulous food!

Please visit our YouTube Channel to view the presentations given by NET Experts.

NETS Get Real- NCAN Podcasts

The re-launch of the NETsGetReal NCAN podcast in 2022, highlights a NET expert every other week to share his or her expertise in the NETs space. Host, Mike Wahmann brings not only the world’s leading NET medical professionals with the latest discoveries in NET but the people living with NETs every day, including patients and caregivers. It covers a number of topics from overcoming difficult insurance company denials to starting your own support group to living with the disease and not letting it define you.

Go to the podcast archive HERE.

19th Annual Celebration of Life Gala

November 19th

This year’s 19th Annual Celebration of Life Gala was held at The Sterling in Bethpage, NY. It was a fun evening celebrating the lives of the many brave and determined NET patients and their families who have touched our lives. Dinner and cocktails were served. There was also dancing, a silent auction, photo booth and 100+ raffle prizes. Funds raised at the Gala will benefit the entire neuroendocrine cancer community and help us get one step closer to a cure.

A Note From Maryann

What a year! It was exciting to be back in-person at conferences after Covid. The National Conference theme was ‘Every Family has a Story, Welcome to Ours.’ We are family once you have called NCAN, attended an event, etc. you become part of our zebra family. We are so grateful for the many families that still take part of our events in honor of their family members who have passed. This is a true testament to the NET Community. The bond we make at these events cannot be broken. There is no other cancer group that has the family feeling that we do as NETs.

We are so very proud of the work that we do here at NCAN. 19 years later we are still going strong. I am always being reminded of the importance of what we do and the healing power of our NET community. NCAN will continue to promote self-advocacy, educate and bring awareness to this disease.

Thank you to our sponsors, speakers, supporters, support group 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!

NCAN Support Group Meetings

2022 saw lots of great activity in NCAN Support Groups. There was a virtual support group meeting every month featuring a top-notch speaker, followed by live Q&A. Afterwards, we broke out into smaller groups for some patient-to-patient discussion.

Many NCAN support groups also held in-person meetings as members felt comfortable doing so.

If you are interested in joining or starting an NCAN patient support group please contact NCAN.

NETS Talk Blog

Always insightful, the monthly blog featured many great titles such as:

• 5 Positive Thoughts While Living with Neuroendocrine Cancer

• Four Tips for NETS Spring Cleaning

• The Reality of Scanxiety and how to Manage It

• Appointment Preparedness

and many more!

Want to see more? Head to the website to read back issues of NETsTalk, HERE.

7th Annual Virtual “Strides for Stripes” Zebra Walk

Hats off to the hard working and determined walkers at the 2022 Strides for Stripes Zebra Walk! What a windfall for awareness of NETs! We are so grateful for each and every walker and sponsor.

Support Group Leadership Training

The program’s goal is to help volunteer, self-help NET support group leaders run a support group.

• First Quarter- Virtual Support Group Leader Summit

• 2023-10-20 to 22 Miami NCAN Support Group Leader Summit

Virtual NET Patient Webinars in Spanish

In January of 2022, NCAN held its very first Spanish speaking NET Patient livestream. Hosted by NET patient, Wendy Knoll, the stream highlighted NET expert, Dr. Jadyra Del Rivero who gave a very spirited presentation and also answered questions from the live audience. After the success of that program, NCAN had decided to establish reoccurring NCAN en Espanol livestream program for 2023 with a targeted 4 events planned with the help of NETs Mexico founder, Michel DeQuevedo hosting to help expand the reach into a very important community.