NCAN

Help Get NET Cancer Awareness BLOOMING This Spring!

~ Tricia Wahmann-Knatz ~ Leave a comment

Help us, the Neuroendocrine Cancer Awareness Network (NCAN), get NET Cancer Awareness BLOOMING this spring by purchasing beautiful flowers for your garden!

NCAN is doing a flower fundraiser this month to get awareness for NET Cancer blooming this spring!

How you can help: Visit NCAN’s fundraising site here and purchase blubs and seeds of your favorite flowers! Then, you will recieve your flowers and NCAN will recieve a whopping 50% profit from your purchase!

How it works: This campaign is running today (March 1st, 2017) through April 30th, 2017. You can place your order beginning now!

Please help us reach our goal of $2500 this spring so NCAN can continue the amazing and tireless work they do throughout the whole year! Remember once you make your purchase, be sure to send the campaign link on to friends and family, as well as sharing on social media such as Facebook!

We thank you for your support and for helping us BLOOM awareness for NET Cancer! Happy shopping and HAPPY SPRING!

Five Reasons to Attend a Neuroendocrine Cancer Patient Conference

~ Tricia Wahmann-Knatz ~ Leave a comment

Educational opportunities. No matter how experienced you are about handling your disease, everyone can learn. Being treated for a rare cancer can often be isolating, and without exposure to a variety of points of view, we can miss new ideas and trends that can impact our futures. The educational aspect of a conference can expose you to new treatment regimens and therapies and help you discover how to be a more productive advocate for your treatment and care.

Networking with peers. Patient conferences provide a great opportunity to network. Often patients and caregivers from different regions of the country can become valuable resources for referrals and best-practices. Avoiding your peers for whatever reason you have can actually limit you own success in fighting neuroendocrine cancer. You will find that the people who come together at a conference can help each other uncover ideas and spark inspiration when they get to know each other on a personal level.

Encounter the vendors & suppliers who provide the therapies you need. Too often people shy away from exhibitors at conferences. They fear they will have to talk to salespeople, but these industry suppliers are some of the best people for you to get to know if you want to learn more about the current direction of treatment. Discovering innovative products and services for your business is critical to your treatment and care in today’s fast-paced world. Invest time with the sponsors at the event and turn them into your friends and allies.

Position yourself as an expert. It has been suggested that well over half the requests by neuroendocrine cancer patients to their physicians for specific treatments are honored. A neuroendocrine cancer patient conference is the perfect opportunity to build your knowledge and become a better advocate for your health! You will hear directly from experts. Save your life by making sure you know enough to participate in your care so you are getting the best treatment plan possible.

Have fun. Being a neuroendocrine cancer patient or caregiver is hard work and it is stressful. All work and no play can get old fast. Patient conferences can add a layer of enjoyment to managing your disease by mixing a social aspect into your patient journey. Taking an extra day at the beginning or end of the trip to explore or visit friends in the region is also a great way to maximize the investment in travel. Never underestimate the power of a little fun mixed with some interesting people!

The internet won’t replace the conference experience. Many falsely believe that since they can now access industry information via the internet that the days of the live meeting are gone. The truth is, meetings are more important than ever. The value in meetings comes from the human-to-human connections that occur. Often people cite the serendipidous “hallway-conversations” that they have with other attendees as the most valuable parts of attending an event. While these are not on the agenda, or mentioned in the learning objectives, when two or more people begin to discuss topics on a deeper and personal level, the success of the event to those involved becomes irreplaceable. It is the people that bring the ROI to your time at a conference.

NCAN has 4 conferences scheduled for 2017. Why not make it your business to attend at least one of them?

Saturday, March 25th – NET Patient Conference – Charlotte, NC (Registration open NOW!)

Saturday, April 22nd – NET Patient Conference – Lexington, KY (Registration open NOW!)

Saturday, May 6th – NET Patient Conference – Seattle, WA (More information to come!)

Saturday, October 14th – NET Patient Conference – Iowa City, IA (More information to come!)

NCAN’s 2017 Kentucky Neuroendocrine Cancer Patient Conference

~ Tricia Wahmann-Knatz ~ Leave a comment

Registration is open for the 2017 Kentucky Neuroendocrine Cancer Patient Conference & support group meeting on April 22nd, 2017 in Lexington, KY!

Date & Time: Saturday, April 22nd, 2017 from 8AM-5PM

Where: Griffon Gate Marriott Resort & Spa – 1800 Newtown Pike, Lexington, KY 40511

Price: $20 per person – includes breakfast, lunch, & snacks

Agenda:

8:00 am – 8:30 am     Registration and Breakfast

8:30 am – 8:45 am     Welcome By: Robert Wahmann          

9:00 am – 9:45 am     Controlling Symptoms of Hormone Hypersecretion By: Lowell Anthony, M.D.

 9:45 am – 10:15 am     Improvements in NET Imaging By: Riham El Khouli, M.D.

 10:15 am – 11:00 am     What is PRRT?  Results of the Randomized Phase III Clinical Trial By: Larry Kvols, M.D.

 11:00 am – 11:15 am     Break

 11:15 am – 11:45 am     Clinical Trials in NET  By: Aman Chauhan, M.D.

 11:45 am – 12:30 pm     Questions and Answers

 12:30 pm – 1:30 pm     Lunch

 1:30 pm – 2:30 pm     Patient Experiences

 2:30 pm – 4:00 pm     Support Group Session

For more information and to by YOUR ticket to the 2017 Kentucky Neuroendocrine Cancer Patient Conference on Saturday, April 22nd, click HERE!

Produced by: NCAN Bandaid

NCAN’s 13th Annual ‘Celebration of Life’ Gala and the ‘Above and Beyond’ Award Honoree

~ Tricia Wahmann-Knatz ~ Leave a comment

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Saturday, November 12th, 2016 was NCAN’s 13th Annual ‘Celebration of Life’ Gala in Bethpage, NY. Held at The Sterling, it was a beautiful evening of dancing, raffles, laughs, and good food!

The Gala is always one of my favorite fundraisers because it really is a celebration. We take the time to not only focus on the cause of NET Cancer, its awareness and fundraising but taking a moment to really enjoy and celebrate time with family and friends.

Every year at the ‘Celebration of Life’ Gala, NCAN takes the opportunity to honor someone who is invaluable to the NET community by presenting the ‘Above and Beyond’ award. Past recipients include Dr. Hal Gerstein, also honoring Dr. Gene Woltering and Dr. Tom O’Dorisio. This year, NCAN has honored Dr. Edward Wolin who is very well known throughout the community for his commitment to NET Cancer and his patients.

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As Director of the Neuroendocrine Tumor Program at Montefiore Einstein Center for Cancer Care, Dr. Wolin brings a robust research program to Montefiore, including multiple clinical trials. His research efforts focus on finding treatments which are more effective and less toxic, including m-TOR inhibitors, targeted radiation including PRRT, anti-angiogenic drugs, novel targeted biologic anti-cancer treatments, and targeted treatment of liver metastases. Dr. Wolin’s research is also directed at development of new imaging and diagnostic procedures for carcinoid/neuroendocrine tumors.

Dr. Wolin is an internationally recognized Neuroendocrine Medical Oncologist. Patients from all over the United States and abroad come to see him for access to personalized care and the latest diagnostic and therapy programs.

Dr. Wolin was previously the Director of Neuroendocrine and GI Oncology Program and the Director of Clinical Research at the University of Kentucky Medical Center.  For the preceding 26 years, he held key positions at Cedars–Sinai Medical Center in Los Angeles, where he founded and directed of one of the largest and most productive Carcinoid and Neuroendocrine Tumor Programs in the country. As you can see, Ed Wolin is one of the foremost experts and best friends that neuroendocrine cancer patients have! For more information on how to reach Dr. Wolin, you can check out a brief profile on him from a previous post here.

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‘Above and Beyond’ Award Honoree – Dr. Ed Wolin and his wife, Susan.

 

Overall, it was a very successful night for NCAN and the NET community. Take a look here at some of NCAN’s wonderful prizes, the big winners of the TV, and one of the delicious cakes!

For more information on how YOU can get involved with NCAN’s 14th Annual ‘Celebration of Life’ Gala on November 11th, 2017, keep your eyes out here and be sure to watch out at NETCANCERAWARENESS.ORG for details! For help in hosting your own fundraising event for NET Cancer near YOU, send me a message here and I’d be happy to assist you.

NCAN would really love to thank all of the volunteers, donors, attendees, and sponsors for all of their time and support! Without you, events like this amazing night would not be possible!

NCAN’s 13th Annual ‘Celebration of Life’ Gala was sponsored by:

NET Cancer Day and Other Exciting News

~ Tricia Wahmann-Knatz ~ Leave a comment

Happy NET Cancer Day, Zebras and Co!

I hope everyone is ready to get out and spread awarenesss of NET Cancer all day.

NCAN has been busily preparing for today:

I’m so happy to announce NCAN’s NEW website launch today! Be sure to take a look right here to check it out!

Also, to celebrate NET Cancer Day, NCAN has released the recordings from the 2016 NATIONAL CONFERENCE from NOLA this past September! Be sure to check these out as they are only FREE through NOVEMBER 30th! Be sure to keep an eye out for new programs from NCAN due out THIS DECEMBER! To take a look at the 2016 NATIONAL NET PATIENT CONFERENCE, please visit HERE!

In celebration for NET Cancer Day and due to the large volume of photos and requests for more time to submit, NCAN will be taking your ZEBRA RIBBON and NET Cancer Day photos through November 13th. Please submit all and any photos of you celebrating today to netcanceraware@aol.com. This video will be released on or about November 15th!

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LET’S PUT AN END TO NET CANCER! GET YOUR ZEBRA ON!

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Call to Action: NET Cancer Awareness

~ Tricia Wahmann-Knatz ~ Leave a comment

Attention All Neuroendocrine/ Carcinoid Cancer Patients, Caregivers, family and friends! Help us bring Awareness to this deadly disease! This is something everyone can do!

Many of you know that November is NET Cancer Awareness Month with NET Cancer Awareness Day on November 10th.

We are asking everyone to wrap or hang zebra ribbons around your community. Trees, mail boxes, telephone poles, hang on front doors, or be creative in your neighborhood in order to help create some buzz surrounding NET Cancer.

All you need to do is get any type of Zebra ribbon. (They can be found in many stores such as Walmart, AC Moore, Michaels, or card stores) and hang them around where the general public where people would question what the Zebra ribbon is for.

NCAN is asking that you take pictures of you, and your family, friends with the ribbon and submit them via e-mail to netcanceraware@aol.com. In your email, please include that you are standing up for the Neuroendocrine Cancer community or in honor or memory of a love one. Please make sure you include the names.

NCAN will be making a video collage to be posted on Youtube, Facebook, and NCAN’s website, as well as here on NETCancerAwarenessBlog.

NCAN is working on getting some press releases out and some media coverage about this for the NET community.

If you have questions feel free to call the NCAN office at (866) 850-9555.

For more information about NET Cancer go to www.netcancerawareness.org

Please invite your family and friends to join!

Get Your Zebra On!

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Raising NET Cancer Awareness, One Step at a Time

~ Tricia Wahmann-Knatz ~ 1 Comment

With NET Cancer Awareness Month coming up, we have several awareness events throughout the country. Here’s just a reminder of a few of these walks we have going on:

Saturday, October 22nd, 2016: NCAN’s 8th Annual ‘Strides for Stripes’ Walk on Long Island, NY.

Location: Parking Field 5 at Eisenhower Park – 1899 Hempstead Turnpike, East Meadow, NY 11554

Time: 10:30AM

Registration: Pre-registration is $35, Day of Registration is $50

Included in registration fee is:

  • T-shirt (first come, first serve basis)
  • Other assorted prizes based on amount raised
  • Coffee, Tea, Hot Chocolate, Water, and assorted snack bars
  • Light lunch and snacks

This event is always a lot of fun, so be sure to come on out!

To register for the walk on Long Island, please click here!

Saturday, November 5th, 2016: NCAN’s 1st Annual ‘Strides for Stripes’ Walk in Charlotte, NC. (Also, Charlotte Area Support Group Meeting to follow.)

Location: Independence Park – 300 Hawthorne Lane, Charlotte, NC 28204

Time: 10:30AM – T-Shirt Pick-Up/Registration

Registration: $25

Registration includes:

  • T-Shirt – First come, first serve if NOT pre-registered
  • Water, Coffee, Snack
  • Light Lunch
  • Support Group Meeting

To register for the Charlotte, NC walk, please click here!

Saturday, November 12th, 2016: The Neuroendocrine Cancer Connection‘s First Annual Strolling for Stripes in Jacksonville, NC.

Location: Jacksonville Commons Rec. Center, Shelter 1

Time: 10AM-12PM

For more information, please contact Karen Connell at (910) 545-7513.

If there is not a NET Cancer Awareness Walk in your area:

NCAN’s Virtual ‘Strides for Stripes’ Walk – Giving you the freedom to walk wherever and whenever is convienient for you!

With a Virtual Walk You Decide Where and When– Since a virtual walk is one you can do anywhere…anytime, it is good for those whose schedule is very busy, who aren’t close to the Long Island or another scheduled event or can’t physically participate. Below is a guide that’s full of ideas to help you plan your own Virtual Walk (or another fundraising event) and help support the fight against Neuroendocrine Cancer.

We ask that you set aside some time to put on your t-shirt with family and friends to walk wherever works for you.

Registration is $35 per walker, within the US only. NCAN will ship your shirt out to you.

Virtual Walk Guide: Fun Ideas for Your Virtual Walk

VIRTUAL WALKERS- If you want to walk on your own, that’s fine! If you’re a person who likes to get people together, why not create your own community fundraising event by planning a walk or other event in your community. You can plan a walk or another type of event like a wine tasting or a bowl-a-thon. By registering as a team on the virtual walk website, your team page would be about your event specifically. Those individuals that choose to join your “team” can fundraise on the website. You can watch the progress of your event and send emails to your contact list encouraging their participation and support.

You may choose to walk around your community, in a local park, indoors at a mall or even on a treadmill at a gym! Your Virtual Walk is a reflection of you, and is as personal as your reasons for joining the fight against this deadly disease.

Not sure where to start? Here are a few ideas.

  • Walk in a mall
  • Take a walking tour of your town
  • Make your grocery shopping or another shopping trip YOUR walk to fight neuroendocrine cancer
  • Belong to a gym? Walk a treadmill, and enlist other members to walk with you
  • Even if you can’t walk, get people involved with a board game, bus trip, beanbag toss- you can be as creative as you want!

To join in on the ‘Strides for Stripes’ Virtual Walk, click here!

If you are interested in help starting up a NET Cancer Awareness Walk in YOUR area, please send me an email at tricia@netcancerawareness.org or send me a text with your Name, Phone Number, Location, letting me know that you’d like some assistance at (516) 366-4497 and I would be more than happy to help you out!

Favorite Food & Drinks in New Orleans

~ Tricia Wahmann-Knatz ~ Leave a comment

Happy Friday Zebras! With less than a week out to plan, I’m sure many of you are looking for things to do outside of the hotel and conference. I’ve made a little list of some of my favorites for you!

Starting out, the first absolute must-have is the classic beignets. If you haven’t had a beignet before, it is a delicious fried dough pillow covered in lots and lots of powdered sugar.

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You can find beignets in a lot of locations throughout NOLA but my personal favorite and probably the most well known are from Cafe Du Monde. Cafe Du Monde has a bunch of locations but the classic location is on Decatur Street, where you can run into this crazy location and hopefully grab a table to enjoy your treats and enjoy a Cafe Au Lait while people watching in this buzzing location.

For more information on Cafe Du Monde, you can find their website here!

 

I’ve gone back and forth with drinking coffee but when in NOLA, I have at least a cup a day. My next must-have is coffee from probably what is my favorite coffeehouse ever. PJ’s Coffee has many different flavors for all taste types as well as assorted other drinks and pastries for a quick breakfast or just an afternoon pick-me-up. My personal favorite drinks include the seasonal flavors Southern Wedding Cake, English Toffee, Frozen Hot Chocolate, and even a Mimosa!

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For PJ’s Coffee locations, you can find them here!

 

If you like burgers, you will LOVE Yo Mama’s Bar & Grill! I came across Yo Mama’s on accident. I’m allergic to seafood and many of the places my friend and I had looked at menus for didn’t have many nonseafood options. The last restaurant we went to, we asked the host if he had a recommendation for us where we could just get some burgers and a drink and he gave us directions to Yo Mama’s. Funny enough, if you don’t know what you’re looking for, you’d probably just walk right past it! We did! It’s a small, hole in the wall bar but the food is delicious! I ordered a plain Cheddar Cheese Burger with a baked potato on the side and was blown away! After taking some family back for dinner that night, they had gotten the Peanut Butter Burger, which has peanut butter and bacon on it, I knew I had found a gem of a location.

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To see the full menu and to get more information on Yo Mama’s Bar & Grill, you can visit here!

 

I LOVE martinis so finding a martini bar in NOLA was high on my list of priorities. A personal recommendation sent me straight to The Bombay Club at 830 Conti Street and it didn’t disappoint! They have many specialty drinks and going in a group of 8, we each had something different that we all enjoyed. The atmosphere was great, the live music was good and the company was even better. The delicious martinis were just the cherry on top.

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For the menu and more information and the backstory of The Bombay Club, you can find on their website here!

 

No NOLA trip is complete for me without grabbing a Voodoo from Lafitte’s Blacksmith Shop Bar. Located on the corner of Bourbon and St. Philip, this historic building is considered the oldest structure in the U.S. to house a bar. Voodoos are SO delicious and very very strong. Even a small one of these, I was only able to drink maybe a quarter of it before I had to stop drinking it, in fear of not being able to continue drinking at the rest of our stops. If you grab a Voodoo, I wouldn’t plan on needing to drink anything else!

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For more information on Lafitte’s Blacksmith Shop Bar and its history, click here!

 

Lastly, is Mr. B’s Bistro. I really don’t have enough great things to say about Mr. B’s. The food and service is always amazing! You can find Mr. B’s at 201 Royal Street. If you plan on heading to Mr. B’s Bistro, you will definitely want a reservation!

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To see Mr. B’s Bistro menu or to make reservations, you can visit their website here!

I hope you guys enjoy my favorite NOLA spots! If you happen to check any of them out, be sure to let me know your thoughts and share your favorites with me!

Also, before you make any plans, remember to check out our conference agenda to not coincide with our unbelievable weekend! If you need the agenda, you can find it here!

*Many photos were taken from Google. Only Yo Mama’s photo is my own.

The Countdown is ON!

~ Tricia Wahmann-Knatz ~ 3 Comments

The countdown is on as today we are just over ONE WEEK OUT from the 2016 National NET Patient Conference weekend in New Orleans, LA!!

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Unable to attend? Subscribe to NETCancerAwarenessBlog for exclusive sneak peaks and updates about the 2016 National NET Patient Conference! Something tells me there will be some vlogging going on that will have some important information that you WON’T want to miss! =]

NCAN is so excited as we get our last minute details ironed out for you!

Look closely here for some addional details and events that have not yet been published:

Thursday- In addition to the opening session, which includes a patient panel whose panelists are medical professionals AS WELL AS patients you will enjoy a really exciting cooking demo featuring neuroendocrine cancer patient friendly recipes.

Friday- 5 PM – Grab a smoothie and a cookie made with neuroendocrine cancer patients in mind, courtesy of one of the conference sponsors, Novartis.

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6 PM – join us for a light snack and networking while you wait for a private comedy show….

7 PM – ENJOY THE COMEDY OF NATIONALLY ACCLAIMED COMEDIAN AND EMMY AWARD WINNING WRITER STEVE MAZAN. STEVE WILL BE PERFORMING A PRIVATE SHOW JUST FOR ATTENDEES OF THE CONFERENCE. DON’T MISS THIS ONE!

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This event is sponsored by: NCAN Bandaid

Sunday- 8 AM to noon – Group Leaders Meeting. If you are a group leader and have not signed up yet, please call us ASAP at 866-850-9555 or email info@netcancerawareness.org if you would like to attend. You MUST sign up today if you would like to attend.

Here’s a more detailed look:

Thursday

Noon- Registration table open

1 pm – 4 pm- Thursday talks and patient panel

4 pm to 6 pm- Novartis Cooking Demo

6 pm to 9 pm- Welcome reception

 

Friday

7 am- Registration and breakfast

7:45 to noon- Morning general session

9:30 – 9:45 break

noon to 1 pm- lunch

1 pm to 5:15 pm- Afternoon general session

2:45 – 3:00 break

4:30 pm – 6:15 pm- NET-friendly smoothies and cookies provided by Novartis

6:00 pm – 7:00 pm- Pre-show snacks

7:00 pm – 7:45 pm- Comedy show- Laughter is the Best Medicine starring Steve Mazan

 

Saturday

7 am- Breakfast

8 am – noon- Morning general session

9:30 – 9:45 break

noon – 1 pm- lunch

1 pm – 5:30 pm- Afternoon general session

2:45 – 3:00 break

 

Sunday

8 am – noon   Group leaders’ meeting

 

Also, here is the agenda for our General Sessions:

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A few more reminders:

  • Please bring extra layers of clothing! The conference rooms DO get cold, please be prepared!
  • For patients: please bring extra medication, in case of emergency! And take pictures of your medication bottles on your cell phone in case you were to lose them!
  • As always, the conference is a safe space for patients. It is a place for learning about a better quality and quantity of life. Please refrain from self-advertisement and solicitation at our conference. If you are caught soliciting, you will be asked to leave for the remainder of the conference without refund. NCAN and our sponsors thank you for understanding and helping us keep this space focused on what is important.

Keep your out for a post on Friday about some of my MUST SEEs and MUST HAVEs while in NOLA! Be sure to subscribe now to be the first to get it right to your inbox!

At the 2016 National NET Patient Conference, Laughter is the BEST Medicine!

~ Tricia Wahmann-Knatz ~ 1 Comment

Looking for a few laughs on Friday night at the National NET Patient Conference?

NCAN is so excited to finally announce the Friday night social event sponsored by NCAN for the 2016 National NET Patient Conference taking place in just a few weeks! This is a great time to network and relax, taking a break from all the heavy information that will be introduced over this amazing, jam packed weekend!

Introducing Emmy Award winning writer, speaker, comedian and fellow cancer survior Steve Mazan:

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Come enjoy a hysterically funny show- ‘Laughter is the Best Medicine’- just for attendees of the 2016 National Neuroendocrine Cancer Patient Conference, starring Emmy Award winning writer, speaker, comedian and fellow neuroendocrine cancer survivor Steve Mazan. Steve is known for his Emmy Award winning writing for The Ellen DeGeneres Show and for performing his comedy on The Late Show with David Letterman, BUT he is most well known for his award winning film, ‘Dying to Do Letterman.’ 

Steve will be hanging out with the crowd, signing autographs, and he will have some merchandise to give away! There will also be a raffle where you can win an autographed DVD of one of Steve’s best shows!

On your way to the show, from 5 pm to 6:15 pm, stop for some healthy and delicious smoothies and cookies provided by one of the conferences sponsors. These tasty treats were designed specifically with neuroendocrine cancer patients in mind. Doors to the show will open at 6 pm and light refreshments will be served. At 7, it’s time for the show, sponsored by the Neuroendocrine Cancer Awareness Network! 

It’s all happening right in the same hall as Friday’s General Session so it’s easy to get to. This is a great time to network and relax, taking a break from all the heavy information that will be introduced over this amazing, jam packed weekend!

Want to learn more about Steve? Visit SteveMazan.com or check out DyingtoDoLetterman.com for more information on Steve Mazan, his cancer journey, and to check out Dying to Do Letterman. Also, check out this Ted Talks that Steve Mazan did back in 2011: It’s Never too Late to Live your Dreams.

For more information on the 2016 National NET Patient Conference in New Orleans, LA September 22nd, 2016 to September 24th, 2016, please click here!

NCAN Bandaid