HNCA News Bulletin

September 2018

HNCA Staff Introductions

Thank you for choosing Head and Neck Cancer Alliance (HNCA) as a resource for information and programs for cancer patients, caregivers, family and friends. HNCA recently completed a staffing transition to better serve you and to better fulfill our mission of saving lives through prevention, early detection, and research of head and neck cancers. We are pleased to introduce the following staff, whose contributions will enhance our programs and offerings.

  • Amanda Hollinger, Interim Director, provides overall staff supervision, acts as a liaison with our board of directors, and facilitates and ensures our compliance with all regulations regarding our status as a non-profit organization.
  • Eileen Sexton, VP, Programs, manages our programs and oversees their ongoing development to ensure we are meeting the needs of our constituents.
  • Elizabeth Langdon, VP, Strategic Communications & Development, oversees our communications and marketing initiatives, secures charitable funding for our programs, and develops fundraising programs to support the organization.
  • Dalena Huynh, Marketing Associate, provides support for our digital communications, social media, and website initiatives, completes graphic design projects, and supports all HNCA staff in a number of administrative capacities.

We look forward to continuing to build and improve our programs, with the goal of providing a full spectrum of resources for anyone facing head and neck cancer—patients, survivors, caregivers, and loved ones. Please contact us at info@headandneck.org with any comments or suggestions.

OHANCAW® Updates

The year is half over, and OHANCA 2018 is still going strong—but it’s not too early to declare this year’s program a success! Thank you to our dental, medical, and community partners who hosted screenings in their communities. Did you know we encourage and support screening and awareness events throughout the year, not just during the month of April? It’s not too late to host a screening in the second half 2018! Register today to host a screening.

We have begun to look ahead to 2019, and we are pleased to announce that our 2019 OHANCAW pinnacle week will be April 7-14. As usual, we expect to see the majority of our screenings taking place during OHANCAW pinnacle week and throughout the month of April. But remember, your screening or awareness events can take place any time in 2019. You choose the date that works best for your team! Early registration will begin in November! 

save the date

Oral, Head and Neck Cancer Awareness Week® 2019 is scheduled for April 7-14.

Your Patient Experience Can Help Advance Research and Treatments

Did you know that your own experience as a cancer patient, and especially your opinions about treatments and side effects, can help shape the future of cancer treatment? The development of new drugs and treatments for cancer is a complex process, but as always, the ultimate goal is to develop better treatments with improved health and quality-of-life outcomes. To get keener insight into patient needs, it’s becoming more common for pharmaceutical companies to engage patients in the earliest stages of their research and development (R&D) process. Patient engagement at this stage typically involves participating in interviews or surveys in which patients are asked about their experiences with their diagnosis and treatment.

HNCA is currently partnering with multiple entities on such studies—and we need your help! You have the opportunity to influence the development of future treatments that will benefit cancer patients for years to come. If you meet the following criteria, consider sharing your thoughts. If you’re qualified and chosen to participate, you will receive a stipend!

Study 1: Recurrent / Metastatic Squamous Cell Carcinoma of the Head and Neck

Study 2: Currently Undergoing Treatment for Squamous Cell Carcinoma of the Head and Neck

Clinical trials are another way patients can impact the future of cancer treatment. Clinical trials are used to test the safety and effectiveness of drugs and devices. Usually, they are sponsored by pharmaceutical companies and are conducted by research teams that include doctors and other medical professionals.

Through clinical trials, you may have access to new approaches to treating cancer that may be more effective than the current best or standard treatments. Just as you may benefit from the results of previous clinical trials, the results of current clinical trials may advance the care of all those diagnosed with cancer now or in the future, leading to improved treatments with the possibility of fewer short- and long-term side effects.

HNCA will share information about new clinical trials for head and neck cancer whenever possible. Patients may also visit to www.ClinicalTrials.gov — a registry and results database of publicly and privately supported clinical studies of human participants conducted around the world. ClinicalTrials.gov currently lists studies with locations in all 50 States and in 200 countries. There are risks and benefits with any treatment, established or experimental. As always, only your medical team can determine whether any clinical trial is right for you. 

Eating Well with Head and Neck Cancer

The Cancer Support Community (CSC) has created a new Frankly Speaking About Cancer® (FSAC) booklet called Eating Well with Head and Neck Cancer, which includes tips on how to cope with common eating problems and provides easy-to-make recipes. This booklet can be downloaded or ordered, and used as a tool to help stay healthy before, during, and after treatment.

CSC presented a webinar of the same name in June, featuring Amanda Hollinger, Head and Neck Cancer Alliance; Jessica Iannotta MS, RD, CSO, CDN, Savor Health; and Dave & Thea Roff, Head and Neck Cancer Survivor and Caregiver. The webinar can be accessed online

Frankly Speaking About Cancer® is the Cancer Support Community’s renowned resource for cancer education. FSAC provides innovative health education through print and digital publications, eLearning courses, online materials, webinars, in-person workshops, and a weekly radio show. To learn more about FSAC and the educational resources they provide, visit their webpage

Ready.Raise.Rise

HNCA is participating in the Ready.Raise.Rise. Pic Your Power challenge—and we hope you will too! Visit Facebook to share a photo showing how you harness your unique inner power to rise up against cancer. Be sure to include a sign that says #ReadyRaiseRise in your image.

With a total of 100 photo submissions, Bristol-Myers Squibb will donate $250,000 to be split evenly across participating cancer advocacy groups like HNCA,

Submit a photo before the challenge ends on September 20, 2018!

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Recipe Contest

To submit your favorite family recipe for head and neck cancer patients and survivors, please send to info@headandneck.org or fill out the online form. When submitting, please be sure to include the following:

  • Name of homemade recipes
  • Individual Submitting along with City, State of Current Residence
  • Photo of your completed dish/beverage from your recipe
  • Permission of usage for the Head and Neck Cancer Alliance to utilize recipe as necessary

Optional: Why you believe your home-created recipe is Award-Winning and benefits the head and neck cancer patient and survivors?

Recipes will be evaluated, tasted and the select 3 recipe creators will receive a free Vitamix® Blender and recipes will be included in the soon-to-be-release HNCA Cookbook, Healing and Easy Eats. Only participants in the U.S. are eligible to win a Vitamix® Blender.

Recipe Card 10: Longan and Ice Cream

Serving Size: 6

Ingredients:
  • 1 (20 oz) can of longan in syrup
  • 1 small container of vanilla ice cream
Cooking Steps:
  1. In a small bowl or small footed dish place one large scoop of vanilla ice cream in the center.
  2. Lace the longan fruit around and on top of the ice cream.
About Longan:

A native of Asia, this edible fruit is often used in East Asian soups, snacks, desserts, and sweet-and-sour foods. They are round with a thin, brown-colored inedible shell. The flesh of the fruit, which surrounds a big, black seed, is translucent white, soft, and juicy.

Excerpted from Healing & Easy Eats: Recipes for Head and Neck Cancer Patients and Survivors (Second Edition), the official cookbook of the Head and Neck Cancer Alliance. Copyright © 2018. Available soon from this website!

Laryngectomee Guide

The Laryngectomee Guidewritten by HNCA board member and throat cancer survivor, Dr. Itzhak Brook, is a very helpful resource for laryngectomees, their caregivers, and medical professionals. It contains information about the side effects of radiation and chemotherapy; methods of speaking; airway, stoma, and voice prosthesis care; eating and swallowing; medical, dental and psychological concerns; respiration; anesthesia; and travelling.

The Guide is available now in nine languages (English, Italian, Bulgarian, Turkish, Arabic, Chinese, Russian, Portuguese, and Persian (Farsi)).

Smash Cancer Provides its 6th Year of Support to HNCA

Smash Cancer is an annual fundraiser started by The Howard Family, who lost both of their parents to head and neck cancer. 2018 marked the 6th annual tournament, and each year the tournament has grown in participation and in oral cancer screenings provided. Thank you to tournament organizer Christine Tatum, her team in Wilmington, NC, and all the sponsors and participants for their amazing and ongoing support!

Since its inception, Smash Cancer has donated over $100,000 to the Head and Neck Cancer Alliance. These funds directly support our Gas Card Program, which provides gasoline gift cards to help head and neck cancer patients get to and from treatments. The Gas Card Program supports hundreds of patients each year, and we couldn’t do it without the wonderful support Smash Cancer.

NEW in 2018: Smash Cancer Orlando! We are pleased to announce that in November 2018, a second Smash Cancer tournament will be offered in beautiful Orlando, FL. Like the original event, the new tournament is a U.S. Tennis Association-sanctioned event and will offer on-site screenings, with proceeds from the tournament supporting HNCA’s Gas Card program.

Survivor Stories: The Beasley's Journey

When getting well becomes a full-time job, a dedicated caregiver and family support system become crucial to recovery. The Beasleys share the story of how they worked together to get to their new normal. 

BOD Happenings:

The dynamic HNCA Board of Directors have been busy educating and advocating for head and neck cancer patients around the world. 

  • In May, Dr. Itzhak Brook of Georgetown University traveled to Taipei, Taiwan where he presented two lectures to the Asian Society of Head and Neck Oncology in conjunction with the publication of the Chinese edition of The Laryngectomee Guide. Dr. Brook spoke to laryngectomees and speech pathologists about life challenges as a laryngetomee, and presented to head and neck surgeons about improving laryngectomee care.
  • Dr. Michael G. Moore of UC Davis Comprehensive Cancer Center was featured on Health Central in “11 Things a Head and Neck Cancer Doctor Wants You to Know.” 
  • Meryl Kaufman, MED, CCC-SLP, BCS-S, was featured on Health Central in ​“How to Deal With Speech and Eating Problems After Head and Neck Cancer.”
  • Jason Mendelsohn had his HPV-related cancer story featured on the website of the International Papillomavirus Society.
  • Meryl Kaufman, MED, CCC-SLP, BCS-S, is conducting intensive advocacy work on behalf of laryngectomees who use TEP (tracheoesophageal voice prosthesis) in regard to issues with Medicare coverage. Click here to learn more about this issue. 

Helpline

Whether you are a patient, survivor, or caregiver, you can call HNCA’s Patient HelpLine when you need a professional and objective ear. Counselors and resource specialists are available to connect you to helpful resources or offer advice. The HelpLine is available in English or Spanish, Monday through Friday from 9am – 9pm Eastern. A live chat is also available. Call (866)-916-5107. 

Get Involved and Support Our Efforts

YOU have the power to help fund research, raise awareness and advocate for access to care. Interested in contributing your time or supporting HNCA? We offer a variety of ways to get involved:

  • Organize a fundraising event in your community;
  • Donate. Your unrestricted gift is key to supporting our mission and our most critical programs;
  • Become a Corporate Partner of events and/or patient-focused or clinician education programs;
  • Partner with our organization and host a screening in your community (only available to clinicians).

For more information on the Head and Neck Cancer Alliance, click here.

Thank You to our Corporate and Community Partners

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