ThyCa NEWS NOTES – November 2012

In This Issue:

ThyCa To Fund 3 New Thyroid Cancer Research Grants in 2013Grants Open to Researchers Worldwide
Proposals Due by January 31, 2013

We are proud to announce the 11th year of our research grants program, with grants open to young researchers and institutions worldwide. ThyCa will award 3 new grants for thyroid cancer research in 2013.

Each grant will be for 2 years. One grant is for research on follicular-cell-derived thyroid cancer (papillary, follicular, anaplastic, and variants). Another is for research on medullary thyroid cancer. The third grant is for research on any type of thyroid cancer. It is named The Ric Blake Memorial Thyroid Cancer Research Grant, in memory and honor of ThyCa co-founder Ric Blake.

The winning grant recipients will be selected by an independent expert panel of the American Thyroid Association (ATA). ATA is the professional association of clinicians and researchers specializing in thyroid diseases. The grant application guidelines are on ATA’s web site (www.thyroid.org).

We are grateful to all of our generous donors who make these grants possible. Donations to date in support of Thyroid Cancer range from $1 to $10,000. What all of these donations have in common is they represent what each of us could give. Thank you! Together we accomplish far more than we can individually. Read more about the grants, and the Rally for Research.

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ThyCa Research Grant Programming to Pass 1 Million Dollars!

We are very pleased to share that with the funding of the grants mentioned in the article above, ThyCa will have funded more than 1 million dollars. Congratulations to all of us for making this milestone happen.

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A Tribute to Ernie Mazzaferri

Since the beginning, ThyCa has relied on the support and friendship of many in the medical community who’ve advised and helped us every step of the way. Ernest L. Mazzaferri, M.D., a longtime friend and medical advisor has been an avid supporter of our work from the beginning, not to mention a huge draw at our conferences.

On Saturday, October 20th, 2012, we honored Dr. Mazzaferri’s longtime support and friendship at our 11th Annual Dinner/Auction Fundraiser for Thyroid Cancer Research as part of the 15th International Thyroid Cancer Survivors’ Conference in Itasca, Illinois.

Due to an illness, Dr. Mazzaferri was unable to attend. His daughter, Patti Atchison, R.N., and her husband, Jim, joined us for a special evening and tribute to her father.

We thought you would enjoy reading what the tribute meant to Patti and her family:

“While my father is a humble man, it was very hard for him to not join all of you again. It was my distinct honor and pleasure to be with you, along with my husband, Jim, in my father’s place.

It was a powerful experience to meet all of you, representatives of all the patients and caregivers he cared for during his long career.

Honestly, in our family we would tease that patients were the unseen face at the table, like another sibling, only one with special needs: health care. We all understood and were in agreement that we could wait while Dad tended to them.

Sure, there were moments of jealousy, as our lives were often interrupted, but they were always fleeting and surpassed by the overwhelming sense of commitment and compassion for those ‘extra faces at our table’, those extra family members …

I encourage all of you to keep up this wonderful work because this support group, ThyCa, is unique and remarkably functional compared to most. In a cancer group it is always difficult due to the mortality rate, but ThyCa seems to have embraced the survivors, the spouses, and the losses much better than most. It is a tribute to all of you. Keep it up!!!

I am going home next week and will bring the plaque to Dad and Mom, and will give it to them in person.

It was a fabulous evening and one I will remember forever!”

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A ThyCa WelcomeBy Bridget Corcoran

(Editor’s note: We’re pleased to share the warm welcome from Bridget Corcoran on Friday morning of the 15th International Thyroid Cancer Survivors’ Conference in October.)

  • My name is Bridget Corcoran, and I’m from here in Chicago, specifically Arlington Heights, for all you local folks. I’m one of the co-facilitators of the ThyCa Chicago Support Group because, like many of you, I am a thyroid cancer survivor. I was diagnosed with papillary thyroid cancer back in 2008, just one month after turning 21.

  • This is my 3rd conference and I’m thrilled this weekend will bring hundreds of people, including many 1st timers, together to share about their thyroid cancer.

  • We will come together from more than 40 states, Washington DC, Canada, Mexico, and the United Kingdom.

  • ThyCa is about education, support, resources, and research for a world free of thyroid cancer. I was lucky enough that my surgeon gave me the ThyCa wallet card and brochure from the start, which helped me prepare for all the things that come with a thyroid cancer diagnosis. That then led me to see that there were conferences, workshops, and online and local support groups through ThyCa.

  • A cancer diagnosis is hard at any age, but ThyCa helped show me that I’m not the only person with thyroid cancer, nor am I the only young person. I am just one of the many faces of thyroid cancer. I think this conference is great since it brings together those newly diagnosed and those that have been survivors for 40 years. You will see that you are NOT alone on this journey.

  • This conference is for us. We are a community — all of us together will make this conference successful and worthwhile. Since there are so many sessions to choose from—all great, by the way—I suggest you check out some sessions you normally wouldn’t go to, because you might really benefit from them.

  • I like to emphasize that the physicians are giving their time here and throughout the year, to help us understand our cancer, and ultimately to become better patients. So be sure to express your thanks to them, because the conference wouldn’t be anything without them!

  • I really believe in giving back and paying it forward, so I encourage everyone to take some ThyCa materials — wallet cards, neck check cards, anything, since it’s up to us as survivors to spread the word about all the good ThyCa does. Doing that helps us grow, allowing us to reach and help more people.

  • I really commend each and every one of you for coming to the conference. This is just one step you’re taking to educate yourselves about your cancer, which is the fastest growing cancer in terms of incidence rate, and I’m sure that you’ll end up educating others along the way.

  • Finally, we all must give a HUGE thanks to the speakers and volunteers for donating their time as well as travel costs! I think we also must thank ThyCa’s Executive Director, Gary Bloom, for all the hard work he puts in to make ThyCa what it is. So, be sure to thank the volunteers when you see them, because the conference wouldn’t exist without them!

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A Writer at a Survivors’ ConferenceBy Aimee Spevak, M.P.H.
Member, American Medical Writers Association

(Note: On the Thursday afternoon before the 2012 Conference, ThyCa sponsored a free writer’s workshop titled “Covering Thyroid Cancer.” We plan to offer this workshop again on the Thursday before the 2013 Conference in Philadelphia.)

At first I was unsure about my place at the conference. I am not a thyroid cancer survivor, but a medical writer, and I’m currently working on a short project about the use molecular markers in thyroid cancer diagnosis and treatment. I attended the writer’s workshop on “Covering Thyroid Cancer” on Thursday, which proved to be an informative experience. I liked that the workshop was small and informal, and that there were survivors there to give firsthand perspectives. I was invited to return to the conference that weekend.

When I returned on Saturday, I was amazed and impressed with the size and scope of the conference. Not only were the medical presenters leading experts in the field (some of whose names I recognize from the research I have done for my current project), but the attendees comprised a group of friendly and open survivors, empowered to learn more about the state of thyroid cancer treatment and upcoming advances in the field. There was even a workshop on the use of molecular markers in thyroid cancer! Lucky for me, and impressive as well that attendees are learning about these cutting-edge technologies.

As a freelance medical writer, it’s rare that I have an opportunity to interact with the experts whose published papers I scour for up-to-date information. Even more rare is the opportunity to be among the patients who will ultimately benefit from the work that I do. I feel lucky to have had the opportunity to attend one day of the International Thyroid Cancer Survivors’ Conference, which gave me an opportunity to talk with survivors and hear their personal stories and gain a human perspective on the thyroid cancer epidemic.

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Thyrogen Supply Fully Restored Globally

On November 13, 2012, Genzyme announced that the supply of Thyrogen (thyrotropin alfa for injection) has been fully restored. Genzyme is able to supply all patient demand globally. ThyCa’s web site has articles and more information about Thyrogen, used for preparing for some tests & treatment in people with papillary & follicular thyroid cancer and variants.

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Did You Know?

The world’s first local Thyroid Cancer Support Group met in Massachusetts in 1996, led by ThyCa Co-Founder Ric Blake.

Every year since then, new ThyCa Support Groups have formed.

Today, there are local ThyCa support groups in more than 90 communities in the United States, Canada, Costa Rica, and Philippines. Find out whether there’s a group near you, get in touch, and attend meetings if you can. Many groups sponsor physician guest speakers, and other specialists.

For the complete list, plus all the groups’ web pages, click here.

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Thank You, Caregivers!

November is National Family Caregivers Month, and around the world, we honor family and friends who are giving your support, caring, and time.

Care of the Caregiver is an article with helpful tips on how caregivers can help themselves while helping others; read it here www.thyca.org/atc/support/caregivers/

Thank you also to all the wonderful caregivers who volunteer for ThyCa! Caregivers are welcome in all our events and programs — support group meetings, seminars, workshops, conferences, Rally for Research, Thyroid Cancer Awareness activities, and more.

Visit www.thyca.org to find out about events and volunteer opportunities.

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Stay Connected and Informed

Patients, caregivers, and health care professionals in more than 96 countries are now receiving ThyCa’s free education, support services, and mailed materials. Our web site has information and downloadable materials in English, Chinese, French, Japanese, and Spanish.

Free Newsletter and Guestbook

We invite you to join our worldwide network. We want to help you stay connected and informed. And, with your help, we’ll be there for every person affected by thyroid cancer.

By signing up on ThyCa’s free Guestbook, you’ll receive the latest news about thyroid cancer, new free publications, events, and more.

If you haven’t already signed up, we invite you to sign up today: www.thyca.org/support/guestbook/

Every Day: Free Webinars

Listen, and learn from experts, anywhere you are in the world. All 9 webinars, covering a variety of thyroid cancer topics, are available free at www.thyca.org/news/webinars/

For more events, visit the Calendar of Events on our website..

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Save the Dates!

Spread the word!

The 16th International Thyroid Cancer Survivors’ Conference
September 27 – 29, 2013
Philadelphia, Pennsylvania

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Follow us on Facebook and Twitter

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Low-Iodine Recipe of the MonthContributed by Betty F.

Spectrum Frosting

1 Cup Spectrum Vegetable Shortening
16 ounces Powdered Sugar
1 teaspoon Vanilla
1 teaspoon Butter flavor
Water

Blend the Spectrum vegetable shortening and the sugar until creamy
Add vanilla and butter flavor
Add a little(1 teaspoon) water at a time
Blend until it has the desired consistency.

If Chocolate Frosting is desired add 1/4 Cup of Cocoa

Add any flavoring you like instead of the butter. For example: maple, coconut, almond, banana.

Betty writes, “I was looking for a frosting to go with “Nina’s Chocolate Cake”. I make the cake in cupcakes. I’ve adapted this recipe from Grandma Theresa’s frosting. Thank you for all the recipe ideas. It is very much appreciated.”

Thank you, Betty, for contributing this recipe and many more. We will include them in the next edition of ThyCa’s FREE Downloadable Low-Iodine Cookbook.

Free and Downloadable

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:

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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Join Us! Become a Member

Help us sustain, strengthen, and extend our services. We invite you to become a member of ThyCa: Thyroid Cancer Survivors’ Association, Inc.

Your membership dues will support ThyCa’s efforts to reach and serve other survivors and their families around the world. Members receive our Membership Messenger newsletter.

Membership is open to everyone worldwide. You may become a 1-year ThyCa member ($25), 2-year member ($45), or lifetime member ($225). For our online Membership Form and our mailed Membership Form, click here.

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Every Day

Every day, thousands of people with thyroid cancer, and their families, receive support, education, and hope from ThyCa: Thyroid Cancer Survivors’ Association, Inc. Your generous support, in the time you give and in financial contributions, is what makes it possible to sustain, strengthen, and expand our services and outreach.

It only takes a minute to volunteer your time by e-mailing to volunteer@thyca.org or to make a donation online in support of ThyCa’s work (or you are welcome to donate by mail to ThyCa, P.O. Box 964, Chesterfield, MO 63006-0964), so click here to give.

Thank you!

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About ThyCa NEWS NOTES
Copyright (c) 2012 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.

Your suggestions for articles are welcome. The deadline for articles and news items is the first day of each month.

Thank you to our writing, editing, and proofreading team for this issue: Bridget Corcoran, Betty F., Leah Guljord, Pat Paillard, Aimee Spevak, Barb Statas, Cherry Wunderlich, and Gary Bloom.

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. Contact us for free awareness materials and information about our free services and special events. E-mail to thyca@thyca.orgcall toll-free at 1-877-588-7904, fax 1-630-604-6078, write PO Box 1102, Olney, MD 20830-1102, or visi tour website..