NCAN’s Upcoming Late 2016-2017 Conference Dates!

NCAN has released the dates for their NET Patient conferences for the end of this year and 2017!

Saturday, December 10th, 2016 – Melville, NY

2017:

Saturday, March 25th, 2017 – Charlotte, NC

Saturday, April 22nd, 2017 – Lexington, KY

Saturday, May 6th, 2017 – Seattle, WA

Saturday, October 14th, 2017 – Iowa City, IA

As soon as we get the agendas, I will be posting those and how to register too!

2017 should be an exciting year!!

 

Raising NET Cancer Awareness, One Step at a Time

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

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.

beignets

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!

mrbsbistro

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.

Tricia Knatz Appointed to Board of Governors of National Association of Nonprofit Organizations & Executives

Tricia Knatz Appointed to Board of Governors of National Association of Nonprofit Organizations & Executives (NANOE)

Washington D.C. – 09/14/2016 – The National Association of Nonprofit Organizations and Executives (NANOE) is pleased to announce the appointment of Tricia Knatz to NANOE’s prestigious 2017 Board of Governors. Knatz will be honored alongside fellow Governors March 7-8, 2017 in Columbia, SC at NANOE’s 2017 Capacity-Building Convention & Expo. This 2-day caucus is critical to charity’s future and will rely on a myriad of industry experts to re­new, improve, strengthen and distribute a new set of guidelines that super-charge nonprofi­t capacity-building.

“Charity” has been paralyzed by a set of failed “best practices” that turned the Non-Profit Sector into a Non-Growth Sector decades ago. Present day systems were established in the late 1950’s by industry associations that knowingly persist in methodologies detrimental to the general public. In response, the National Association of Nonprofit Organizations & Executives formed a working group of thought-leaders (renowned practitioners, volunteers, academicians and philanthropists from around the world) to research and develop a new set of capacity-building “competencies” that empower nonprofit in ways previously thought to be impossible. This esteemed group has completed phase one and will submit 60 new key practices to NANOE’s Board of Governors for evaluation. Governors will review, expand and/or redact these key practices during annual convention and will emerge with a new set of competencies that increase sector impact.

Headquartered in Washington, D.C. NANOE is the only unifying nationwide association for charitable organizations and executives who serve the human welfare, education, healthcare, faith-cause, environmental and arts sectors.

The Countdown is ON!

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!

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

2016 LungNET Conference Video Recordings

Happy Monday, fellow Zebras!

Some of you may have seen that NCAN and The Healing NET Foundation have been slowly releasing the videos from the LungNET Conference in Denver, CO on June 11th. Here is a place where you can get all the links in one spot!

Introduction to the 2016 LungNET Conference:

Visit NCAN’s website here. HNF’s website here, and for more information on Dr. Liu, you can get that here.

Basics of Lung Neuroendocrine:

For more information on Dr. Ramirez, you can see my post introducing him, here.

Pathology for Lung Neuroendocrine

You can find more information on Dr. Ryan here.

Surgery of Lung Neuroendocrine:

You can find more information on Dr. Parker here.

Pulonary Medicine for Lung Neuroendocrine:

To find more information on Dr. Kobitary click here.

Medical Therapy for Lung Neuroendocrine:

For more information on Dr. Öberg click here.

Clinical Trials in All Neuroendocrine:

For more information on Dr. Liu, see above links to Dr. Liu’s introduction as well as The Healing NET Foundation website.

Non-Medical Management of Metastatic Disease:

For more information on Dr. Nutting, click here.

Questions and Answers Part 1

Questions and Answers Part 2

NCAN would like to thank all of their speakers, sponsors, and attendees for another successful event!

Want to experience an NCAN NET Patient Conference yourself? Please keep up with NCAN by adding yourself to their mailing list by going to their website and be sure to “like” NCAN on Facebook! Also, keep your eyes out here, on NET Cancer Awareness Blog for some awesome announcements for 2017 coming soon!!

Upcoming: The 2016 National NET Patient Conference in New Orleans, LA!! If you haven’t already, check out that information here because time to register is running out!!

Survey on Cancer Education for Children

How much is too much (or not enough) to tell children about a parent’s cancer diagnosis?

Cancer education for children is something I am extremely passionate about. I have very strong views on this matter, having lived through this myself. I get asked all the time about what a parent should say or how much to say to their children when it comes time for the “Big C” discussion. On the other hand, since about the age of 12, I have also heard from hundreds of kids, like myself, who are on the receiving side of the information, who feel they haven’t been given enough.

This is something that I have been thinking about a lot the last few months and have tailored my ideas moving forward specifically for children of parents with NET Cancer. (Keep your eyes peeled this fall!)

I have been approached by CancerEd: a team of faculty and students from Calvin College in Grand Rapids, MI. CancerEd is working to create free content to be used teach K-12 students about cancer in a scientifically accurate, yet sensitive manner with materials that are age-appropriate. They already have a few of these lesson plans that can be viewed on their website CancerEd.org.

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In efforts to keep developing quality content and to tailor these curriculums, they have reached out with a survey to better understand the conversation and tools being used (or needed) by parents (or caregivers) who have cancer (or had) in order to facilitate these highly important and difficult discussions.

Please take the time to fill out this anonymous survey and please pass this survey on to anyone who can participate in order to gather this extremely important information!

CancerEd Parent Survey

A huge thank you to anyone who takes the time to fill this survey!

If you have any questions or concerns reguarding this survey, or if you would like a PDF version to fill out or pass on to others, please reach out to me at tricia@netcancerawareness.org or leave me comments here!

Thanks again!

Tricia Wahmann-Knatz

Speaker Spotlight – National Conference Edition Part 11

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James R. Howe V, MD

uofiowaclinic

Bio:

Director, Division of Surgical Oncology and Endocrine Surgery

Co-Director, Neuroendocrine Cancer Clinic

Professor of Surgery  – Surgical Oncology and Endocrine Surgery

Education:

MD, University of Vermont College of Medicine

Fellowship, Surgical Research Fellow, Washington University

Residency, General Surgery, Barnes Hospital

Fellowship, Clinical, Surgical Oncology, Memorial Sloan-Kettering Center

Licensure and Certifications:

Iowa Medical License, Iowa Board of Medicine

Certified, Advanced Trauma Life Support

Board Certified, General Surgery, American Board of Surgery

Qualifying Examination, American Board of Surgery

Recertification Examination, American Board of Surgery

Research Summary:

I am a Surgical Oncologist and Endocrine Surgeon who specializes in taking care of patients with cancers of the pancreas, liver, GI tract, soft tissue sarcoma, melanoma, thyroid, parathyroid, and adrenal glands; I am co-director of the neuroendocrine cancer clinic, Division Director of Surgical Oncology and Endocrine Surgery, and Professor of Surgery at the University of Iowa. My area of research expertise is in Familial Cancer Syndromes, genetic linkage, gene discovery, and gene expression studies. My postdoctoral training at Washington University under Helen Donis-Keller, Ph.D. and Samuel Wells, M.D., was directed at the identification of the gene for Multiple Endocrine Neoplasia Type 2. As a faculty member, my focus has been the genetics of Juvenile Polyposis, which led to the discovery of the 2 predisposing genes. More recently, I have developed a large clinical practice and research interest in the genetics of neuroendocrine tumors (NETs). Our current research focus is the study of gene expression profiles in pancreatic and small bowel NETs to identify new targets for imaging and treatment, and collection of families to search for predisposing genes.

For more information on Dr. James Howe and the University of Iowa Hospitals and Clinics, please visit their website here. You can also view Dr. Howe’s academic profile, here.

You can read Dr. Howe’s publications by clicking here.

For information on the Neuroendocrine Cancer Program at the University of Iowa Hospitals and Clinics, you can find that here.

To make an appointment, please contact:

University of Iowa Hospitals and Clinics: 200 Hawkins Drive, Iowa City, IA 52242

Phone: (800) 777-8442 or (319) 356-1727

Dr. Howe at the 2016 National NET Patient Conference:

Topic: Hepatic Resection vs Liver Directed Therapy

When: Saturday, September 24th, 2016 at 8:30AM*

SIGN UP NOW FOR THE 2016 NATIONAL NET PATIENT CONFERENCE in New Orleans, LA from September 22-24th to see Dr. Howe and 19 other experts speak on Neuroendocrine Cancer! 

Registration is $125 per person including

  • Thursday’s Welcome Reception 
  • Breakfast, Lunch, and snacks for both Friday and Saturday
  • And keep your eyes out for some special prizes!

Registration does not include your hotel stay or travel expenses.

For more information and to buy your ticket, click here!!

*Time and Date are subject to change.

To check out some of our other speakers, click here!