ThyCa NEWS NOTES – May 2013

In This Issue

 In Memory and Gratitude — Ernie Mazzaferri, M.D.

With deep sadness we write to tell you that Ernie Mazzaferri, M.D. has passed away. To thyroid cancer survivors and caregivers as well as his colleagues, he was a true leader, mentor, and friend.

He was a ThyCa medical advisor for many years. He gave generously of his time, wisdom, and encouragement, at the annual conferences, during and between sessions, often sitting in on additional sessions as an attendee, and through providing input and review for ThyCa print publications and the web site information.

A few of the tributes from ThyCa members:

  • “Ernie was more than a speaker at ThyCa conferences — he was a leader, a mentor, but mostly a FRIEND to all, all patients and caregivers, including the anaplastic thyroid cancer community. I was always impressed with session attendance when he spoke. The informality with which he conducted sessions lent itself to learning and growth on many levels for everyone privileged to be there!”
     
  • “He truly had passion about what he did, the patients he saw, and the doctors he mentored.”
     
  • “I remember him going through the ATA guidelines at one of the conferences–that was my introduction to him. And, then, patiently talking to the people who gathered around him wherever he went. He will be greatly missed.”
     
  • “He was always so kind, helpful, and understanding. I will miss him dearly.”
     
  • “What a wonderful man this great doctor was. I have never met anyone with such stature of greatness who was as humble of a servant. He was such an encouragement to me during the early years of my young son’s diagnosis. He was one of the best friends of ThyCa, one who advocated for anyone who was in need. He has left his mark on the hearts of so many.” 

ThyCa was proud to honor Dr. Mazzaferri last year at the research fundraising dinner/auction at the annual Conference.

“Ernie was a gentleman without peer, in addition to being a giant in the field of thyroid cancer and thyroid,” said Gary Bloom, ThyCa Executive Director and thyroid cancer survivor. “He worked with all of us as equals, whether we were medical professionals or patients. It was a pleasure to work with him.”

Our thoughts are with his family. We will miss him greatly.

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The AYA Thyroid Cancer Survivors’ Survey Seeks Your Input

This survey was developed by physicians from the University of California Los Angeles and University of Southern California, with ThyCa cooperating in this effort.

The goal is to learn more about the information and support needs of thyroid cancer survivors. The survey takes about 5 minutes. Click here to take the survey. Thanks in advance for taking part! To date, nearly 1,100 people have participated. Please take the survey so that all of us can be heard.

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Clinical Trials

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Hypoparathyroidism Patient/Family Conference June 6-8

On June 6-8, 2013. The nonprofit Hypoparathyroidism Association is holding its annual Conference, with leading experts speaking on the research advances and coping with this challenging disorder, which sometimes occurs as a complication of thyroid surgery. See the Hypoparathyroidism Association’s web site at www.hypopara.org for details. ThyCa is pleased to collaborate with the Hypoparathyroidism Association in our mutual goal of reducing the incidence of post-surgical hypocalcemia/hypoparathyroidism that occurs in some people with thyroid cancer.

In addition, Hypoparathyroidism Awareness Day worldwide is June 1, sponsored by the Hypoparathyroidism Association. in addition to their conference, information, and support services. We applaud their great efforts, and also want to note the informative website on hypoparathyroidism from NPS Pharmaceuticals at www.hypoparathyroidism.com. Some thyroid cancer patients have hypoparathyroidism.

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Free Thyroid Cancer Workshop in Maryland on June 22

Paul Ladenson, M.D., Endocrinologist at Johns Hopkins and Douglas Van Nostrand, M.D., Nuclear Medicine Physician at Washington Hospital Center are two of the medical professionals speaking at the Mid-Atlantic Thyroid Cancer Survivors’ Workshop on Saturday, June 22, in Silver Spring, Maryland. The workshop is free and open to everyone interested in thyroid cancer. More details on our Conferences and Workshops page.

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Free Cancer Rights Conference in Los Angeles on June 28

On Friday, June 28, 2013, the Cancer Legal Resource Center is sponsoring an informative conference with attorney speakers in Los Angeles, California. Learn from experts, and ask your questions about health insurance, employment, disability, and more. At University of Southern California Norris Comprehensive Cancer Center. For more information visit the web site of the Cancer Legal Resource Center (www.cancerrightsconference.org). ThyCa is pleased to partner in support of this event.

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Know Someone (you?) Newly Diagnosed with Thyroid Cancer?

We have a free patient information packet and mail it to people around the world. It has the handbook Thyroid Cancer Basics, and much more, including some materials to share with your physician. Request your copy, or a copy for someone you know.

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347 Miles So Far on the Pacific Crest Trail!

Congratulations and thanks, Jennifer, for your terrific hike for Thyroid Cancer Awareness, as well as fundraising for ThyCa’s services and thyroid cancer research grants! For Jennifer’s story of her 2,650-mile hike, & more, visit our Rally for Research page and find out how you can help by donating to ThyCa.

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May and June Golf Tournaments Raise Awareness and Research Funds

Watch our Rally for Research page for details.

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Videos Online

Watch videos of thyroid cancer survivors telling their stories on our Videos and PSA’s page.

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Make Connections and Learn the Latest at the Conference September 27-29

The 16th Annual International Thyroid Cancer Survivors’ Conference will bring leading experts to Philadelphia, Pennsylvania, September 27-29, for an unparalleled opportunity to learn the latest about every aspect of thyroid cancer care and research, from testing before diagnosis to care over the long term and the latest research for coping with complex and difficult situations with each type of thyroid cancer.

We’re excited about the tremendous lineup of medical experts you’ll meet at this important and unique event. They’re coming from M.D. Anderson Cancer Center, Massachusetts General Hospital, University of Pennsylvania, Children’s Hospital of Philadelphia, and numerous other leading thyroid cancer treatment and research programs.

Session leaders will include dozens of leading medical experts, plus coping-skills specialists, mental health professionals, attorneys, and more. We’re also pleased that the Hypoparathyroidism Association will again join us for sessions about coping with post-surgical hypocalcemia/hypoparathyroidism.

More than 100 session choices will offer a terrific variety of sessions and speakers at each time period each day. Read through past years’ program schedule, on our web site, for an idea of the amazing range of topics and experts.

Once again, we’re pleased to announce that we’ve arranged a special $99 hotel room rate for conference attendees at the Clarion Hotel Conference Center, our conference hotel.

Registration and hotel room reservations are now open. Come for 1, 2, or all 3 days of learning, discovery, sharing experiences, camaraderie, and new friendships!

And remember, scholarships are available on request to cover the registration fee (simply check the scholarship box on the form). Save the dates! We look forward to seeing you there. Check our Conferences and Workshops page for the latest details.

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Anaplastic Thyroid Cancer Handbook Now in Print, plus Downloadable

The free Anaplastic Thyroid Cancer (ATC) handbook is available on our Anaplastic Thyroid Cancer page, and in its print edition in English, and will soon be available in Chinese and Spanish. This 40-page manual focuses on the rarest and most aggressive thyroid cancer, diagnosed in about 1% of all people with thyroid cancer. Thanks very much to the numerous physician specialists, patients, and caregivers who developed and reviewed this valuable new resource.

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Webinar Library Offers Free Education from Your Home Every Day

Our one-hour Thyroid Cancer Webinars feature experts from Dana Farber Cancer Institute, Johns Hopkins, M.D.. Anderson Cancer Center, Memorial Sloan-Kettering Cancer Center, and many more leading centers. Each webinar is an hour long. Watch and listen wherever you live in the world. The free webinar library is available online on our Webinars page. You need to register to participate, but it’s a formality. Remember, ThyCa never shares, loans or gives out people’s contact information.

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Thank You to our Recent Guest Speakers

Thank you very much to the medical professionals who spoke and answered questions at the Midwest/Missouri Workshop, Midwest/Chicago Workshop, and support group meetings of ThyCa South Broward, Florida, Support Group, ThyCa Long Island, New York, and ThyCa Jersey Shore University Medical Center Support Group in New Jersey. Visit our Calendar and Support Groups pages for more events and guest speakers.

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ThyCa at OMG Cancer Summit for Young Adults

Thank you to Chris Prestano and Joel Amromin, ThyCa volunteers who represented ThyCa and handling our table at the OMG Cancer Summit for Young Adults in Las Vegas, Nevada, sponsored by the Stupid Cancer organization.. Chris facilitates the ThyCa Salt Lake City, Utah, Support Group, and Joel co-facilitates the ThyCa San Fernando Valley and ThyCa San Gabriel Valley, California, Support Groups.

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Promoting Awareness of All Thyroid Diseases

We were proud to support World Thyroid Day on May 25, focusing on every type of thyroid disease. We greatly appreciate the efforts in education on all thyroid diseases, by the American Thyroid Association, American Association of Clinical Endocrinologists, European Thyroid Association, and many more medical professional associations. You can help promote early detection of thyroid cancer by e-mailing us to ask for free Neck Check Cards (plus more materials), and by visiting our Raise Awareness page.

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Free Newsletters and Guestbook

We invite you to join our worldwide community. We want to help you stay connected and informed about thyroid cancer news. And, with your help, we’ll be there for every person affected by thyroid cancer. If you haven’t already signed up, we invite you to sign up on our Guestbook page today.  

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News From the Rally for Research

We have awarded more than $1 million in thyroid cancer research grants to researchers in 5 countries, thanks to your wonderful support!

ThyCa’s Research Grants are open to institutions and researchers worldwide, with grant recipients selected by an independent expert panel of the American Thyroid Association.

Read more here, and find out how you can help, on the official Rally for Research page.

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Low-Iodine Recipe of the Month

Contributed by Laura B.

Avocado Mousse: An Easy Dessert

  • Avocado
  • 1 Tablespoon sugar
  • 1/2 teaspoon vanilla extract

Blend the ingredients until smooth. Amounts can be adjusted according to personal taste.

Laura writes, “Years ago a friend made this for me and I found it delicious. I’m so thankful because otherwise I never would have thought of it.”

Thank you, Laura! We will include your recipe in the next edition of ThyCa’s FREE Downloadable Low-Iodine Cookbook.

Free and Downloadable

Click here to download the 7th edition of the Low-Iodine Cookbook in English for free, with more than 340 favorite recipes from more than 150 generous volunteers.

The Cookbook is also available in:

• Spanish and

• French

Please remember, while you’re welcome to download and print the entire free low-iodine cookbook, you can also print just the pages you need.

This free cookbook is a wonderful help when you’re preparing to receive radioactive iodine for treatment or testing. All the recipes are favorites of some of our ThyCa volunteers, who are sharing them with everyone, to make the low-iodine diet easy and tasty. The recipes are also great for family meals and for potlucks, any time.

To contribute your favorite recipe or tip, send it to recipes@thyca.org.

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Thyroid Cancer Awareness Month Coming Soon!

Partner with us for Worldwide Thyroid Cancer Awareness Month in September. Get tools, tips, and free materials anytime on our Awareness page.

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About ThyCa NEWS NOTES and ThyCa

Copyright (c) 2013 ThyCa: Thyroid Cancer Survivors’ Association, Inc.

Please share ThyCa News Notes with your family and friends. For permission to reprint in another electronic or print publication, please contact us at publications@thyca.org. Each complete issue is also published on our Newsletters page.

The information in this newsletter is intended for educational purposes only. It is not intended, nor should it be interpreted, as medical advice or directions of any kind. Readers are advised to consult their own medical doctor(s) for all matters involving their health and medical care.

ThyCa: Thyroid Cancer Survivors’ Association, Inc. is a non-profit 501(c)(3) organization (tax ID #52-2169434) of thyroid cancer survivors, family members, and health care professionals serving people worldwide and dedicated to education, support, communication, and fundraising for thyroid cancer research.

ThyCa sponsors the annual International Thyroid Cancer Survivors’ Conference, as well as Thyroid Cancer Awareness Month, a worldwide observance each September, plus year-round awareness campaigns, research funding, and thyroid cancer research grants.

Contact us for free materials and information. E-mail to thyca@thyca.org call toll-free at 1-877-588-7904, fax 1-630-604-6078, write PO Box 1102, Olney, MD 20830-1102, or visit our web site.