ThyCa NEWS NOTES – June 2010

In This Issue

ThyCa Marks 15th Anniversary Year

Fifteen years ago, in the spring of 1995, thyroid cancer survivor Karen Ferguson of North Carolina began reaching out over the Internet to find other people with thyroid cancer.

Karen’s efforts to help herself led to the creation of a new online service, and it would grow into a unique organization that would help countless others … ThyCa.

In 1994, Karen came up with the idea of using the Internet to reach out in an organized way to others with thyroid cancer. In 1995, Karen and two other thyroid cancer survivors formed the AOL Mutual Support chatroom.

Services grew rapidly. ThyCa has grown from its simple beginnings to a broad range of free support services, educational programs and events, and thyroid cancer awareness activities provided by more than 350 volunteers, managed by 11 volunteer committee coordinators, plus a fulltime Executive Director.

ThyCa’s newsletter now has more than 18,000 subscribers, and the web site www.thyca.org receives more than 320,000 hits each month.

Thanks to our generous donors, ThyCa has proudly awarded thyroid cancer research grants each year since 2003. ThyCa grants are open to researchers and institutions worldwide, working toward our dream of a future free of thyroid cancer.

We thank all the wonderful people who have contributed to the founding and continuing growth and worldwide reach of ThyCa.

We invite you to join in celebrating our 15th year. Please reach out to your family, friends, health care professionals, co-workers, and community groups. Help promote awareness for early detection, for prompt treatment, for access for everyone to ThyCa’s comprehensive array of free services, resources, and special events, and for more research for cures for all thyroid cancer.

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Thyroid Cancer Diagnoses Predicted To Set New Record in 2010: ThyCa Urges Early Detection Through Neck Checks

Thyroid cancer, one of the few cancers that is increasing in incidence, is expected to reach a new record of 44,670 people newly diagnosed (with 1,690 estimated deaths) in the United States in 2010, reports ThyCa: Thyroid Cancer Survivors’ Association (www.thyca.org), based on information from the U.S. Department of Health and Human Services and the American Cancer Society. The 2009 totals were for 37,200 people newly diagnosed and 1,630 deaths.

A longer article plus fact sheets are being added to www.thyca.org

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Come to the Free California Thyroid Cancer Survivors’ Workshop Saturday, July 17

On Saturday, July 17, 2010, thyroid cancer survivors, caregivers, and friends are invited to the California Thyroid Cancer Survivors’ Workshop, sponsored by ThyCa: Thyroid Cancer Survivors’ Association, Inc.

This free event takes place from 8:30 a.m. to 5 p.m. at Stanford Cancer Center, 2nd Floor Conference Room, 875 Blake Wilbur, California.

Speakers include:

  • Haruko Akatsu, M.D., Endocrinologist, Stanford University Medical Center
  • Erik Mittra M.D., Nuclear Medicine, Stanford University Medical Center
  • Wen T. Shen M.D., Endocrine Surgeon, University of California at San Francisco Medical Center
  • Ava Wu, D.D.S., University of California at San Francisco School of Dentistry, Oral Medicine
  • Michael Yao M.D., ENT, Stanford University Medical Center
  • ..and more expected

You are invited to come for all or part of this free educational and supportive day. Register either online or onsite at the workshop. The web site will add the day’s program schedule and further details. For more information, e-mail to SiliconValley@thyca.org
or thyca@thyca.org or call 1-877-588-7904. Visit www.thyca.org for more details.

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Free One-Day Conference on Multiple Endocrine Neoplasias in Houston, Texas, June 26

On Saturday, June 26, 2010, in Houston, Texas, patients and caregivers are invited to a free conference on Multiple Endocrine Neoplasias (MEN1 or MEN2). This event is sponsored by University of Texas M.D. Anderson Cancer Center. For more information go to www.mdanderson.org/departments/ccg, call 713-745-7391 or e-mail ccg@mdanderson.org.

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More than 20 Medical Professional Speakers Confirmed for ThyCa Conference — 13th International Thyroid Cancer Survivors’ Conference in Dallas, Texas

You’re cordially invited to Dallas, Texas, on October 15 – 17, 2010, for this unique weekend of learning from experts and sharing experiences with others with all types of thyroid cancer.

We’re excited about the tremendous program being planned.

We’re pleased to announce that we’ve already confirmed more than 24 speakers, including surgeons, endocrinologists, medical oncologists, and other specialists, from:

  • Cleveland Clinic, Ohio
  • Dana Farber Cancer Institute, Massachusetts
  • M.D. Anderson Cancer Center, Texas
  • Massachusetts General Hospital Cancer Center, Massachusetts
  • Mayo Clinic, Minnesota
  • National Cancer Institute, Maryland
  • New Mexico State University, New Mexico
  • New York University Clinical Cancer Center, New York
  • Ohio State University Cancer Center, Ohio
  • University of Chicago Medical Center, Illinois
  • University of Colorado at Denver and Health Sciences Center, Colorado
  • University of Pennsylvania, Pennsylvania
  • University of Texas Southwestern Medical Center, Texas
  • Yale University School of Medicine, Connecticut
  • …and more speakers being confirmed.

Help spread the word about this unique event. All of us can help make this the best attended Thyroid Cancer Survivors’ Conference ever! Download the flyer from our Conference page on www.thyca.org or send an e-mail to conference@thyca.org with your mailing address requesting a stack of flyers for you to distribute. Visit the web site often for updates and volunteer opportunities, as well as registration.

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Conference Registration Opens

Register early to save your time and ours. Find Conference details and click on the online Registration Form.

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Megan Stendebach Memorial Golf Classic Raises Nearly $15,000 for ResearchBy John Oaks, San Antonio, Texas

The Golf Tournaments originated by Megan Stendebach, and, more recently, held in her memory, had raised a total of $89,000 through 2009. The goal for 2010, was to reach the $100,000 mark, and I’m thrilled to tell you we were successful. We are sending ThyCa a check for $13,350 and we also raised $1,515 in credit card donations. So our 2010 total raised is $14,865 for a cumulative total of $103,865.

We will start working on the second $100,000 on May 1, 2011, at the 10th Annual Megan Stendebach Memorial Golf Classic, and hopefully we will be just as successful.

(Editor’s Note: Our special thanks to John Oaks, owner of the Hangin’ Tree Saloon in San Antonio, Texas, for your wonderful support of ThyCa through this event honoring the memory of longtime ThyCa volunteer Megan Stendebach.)

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Karen Meeks Johnson Raises Awareness in Sacramento Valley and Throughout California

Karen Meeks Johnson of Sacramento, California, is busy raising awareness of thyroid cancer with her title of Mrs. Sacramento Valley-America 2010 and also through her service as the volunteer facilitator of the ThyCa Sacramento Valley Support Group. Karen is also an elementary school teacher, a singer, and a songwriter. She soon will have a booth at a community health fair at her school, and also in a community event sponsored by a local grocery chain. In July she will compete for the title of Mrs. California-America 2010. Thank you, Karen, for your thyroid cancer awareness and outreach efforts.

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ThyCa at ATA Meeting

ThyCa exhibited at the American Thyroid Association’s meeting in Minneapolis, Minnesota, this May. ThyCa was represented by Gary Bloom, Executive Director. In addition ThyCa co-sponsored the public education form on thyroid diseases held in conjunction with the meeting, ThyCa also gave out free materials to patients and caregivers at this meeting.

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Power of Prevention Magazine Features ThyCa

Power of Prevention Magazine, published by the American Association of Clinical Endocrinologists to educate patients and the public about thyroid disorders, has an article about ThyCa: Thyroid Cancer Survivors’ Association. Thank you to AACE for raising awareness and to the authors of the ThyCa article: Roselle Kovitz, Gary Bloom, and Cherry Wunderlich.

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ThyCa’s Services Reach Families Around the Globe

During the past year, ThyCa’s one-to-one support and free information packets served thyroid cancer survivors, caregivers, and health care professionals around the world— in Australia, Brazil, Canada, Costa Rica, Egypt, Germany, Guam, India, Israel, Italy, Japan, Kuwait, Malaysia, Mexico, Netherlands , New Zealand, Pakistan, Philippines, Portugal, Puerto Rico, Saudi Arabia, Singapore, South Africa, Sri Lanka, Switzerland, Thailand, Turkey, Ukraine, United Kingdom, United States, and Venezuela. Our services and educational resources are free and available to everyone, and our research grants are also open to researchers worldwide.

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New Local Support Groups Meet in Arkansas, California, Kansas, New York, and Oregon

Thank you to the volunteers who stepped forward to form these new support groups:

ThyCa Benton, Arkansas Support Group
Jessica Teague, Facilitator

ThyCa McKinleyville, California Support Group
Kathy Miller, Facilitator

ThyCa Overland Park, Kansas Support Group
Lorrie Mayes and Connie Schade, Facilitators

ThyCa Manhattan, New York Support Group
Arlene Bregman, Facilitator

ThyCa Portland, Oregon Support Group
Becky Johnson, Facilitator

For the web pages of all the local support groups, visit our Support Group page.

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Thyrogen Supply Temporarily Reduced in United States

Starting in late May, supplies of Thyrogen within the United States will be reduced until sometime in November, under the terms FDA set for Genzyme Corporation regarding the manufacturing process. This news does not affect supplies of Thyrogen outside the United States. Thyrogen is FDA-approved for use for preparing for certain testing and for preparation for radioiodine treatment for people with well-differentiated thyroid cancer (papillary, follicular, or their variants). Further information about Thyrogen and about this news from Genzyme and the FDA are in this section of ThyCa’s web site.

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Volunteers in the Spotlight

Thank you to these physicians and other professionals for volunteering your expertise and time to educate the large numbers of survivors and caregivers attending our 2010 Regional Workshops:

  • Haruko Akatsu, M.D., Endocrinologist, Stanford University Medical Center, Stanford, CA
  • James Bergh, M.D., Nuclear Radiologist, St. Joseph Medical Center, Kansas City, MO
  • Dr. Burrage, ENT Surgeon. Newfoundland and Labrador, Canada
  • Teresa Day, Day Insurance Solutions, Topeka, KS
  • Gerri Anne Devereaux, Dietitian, Newfoundland and Labrador, Canada
  • Mehdi Djekidel, M.D., Nuclear Medicine Physician, Yale-New Haven Hospital, New Haven, CT
  • Henry G. Fein, M.D., Endocrinologist, Sinai Hospital, Baltimore, MD
  • Erin A. Felger, M.D., Surgeon, Washington Hospital Center, Washington, DC
  • Gail Gaspar, M.A., Professional Life and Leadership Coach, iDecide Coaching, MD
  • Dr. Ingram, Internist, Newfoundland and Labrador, Canada.
  • Heather A. Jacene, M.D., Nuclear Medicine Physician, Johns Hopkins Medical Institutions, Baltimore, MD
  • Uzma Khan, M.D., Endocrinologist, University of Missouri Medical Center, Columbia, MO
  • Paul Ladenson, M.D., Endocrinologist, The Johns Hopkins University School of Medicine, Baltimore, MD
  • Lorrie Mayes, L.P.N., Kansas City Internal Medicine, Kansas City, MO
  • Suzanne Mitchell, M.D., Family Practice Physician, Somerville, MA
  • Erik Mittra M.D., Nuclear Medicine, Stanford University Medical Center, Stanford, CA
  • Debbie Ritchie, R.N., Advanced ENT Nurse Practitioner, Columbia, MO
  • Errol Rushovich, M.D., Endocrinologist, Center for Bone Health & Division of Endocrinology, Mercy Medical Center, Baltimore, MD
  • Katherine Satterfield, L.P.C., Licensed Professional Counselor and Life Coach, VA
  • Lisa Shnayder, M.D., F.A.C.S., Otolaryngologist, University of Kansas Medical Center, Kansas City, KS
  • Wen T. Shen M.D., Endocrine Surgeon, University of California at San Francisco Medical Center, San Francisco, CA
  • Beatriz Tendler, M.D., Endocrinologist and Assistant Professor of Medicine, University of Connecticut Health Center, Farmington, CT
  • Leonard Wartofsky, M.D., Endocrinologist, Washington Hospital Center, Washington, DC
  • Ava Wu, D.D.S., University of California at San Francisco School of Dentistry, Oral Medicine, San Francisco, CA
  • Michael Yao M.D., ENT, Stanford University Medical Center, Stanford, CA

We greatly appreciate your wonderful support.

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Write From the Heart – Help ThyCa Mark 15th Year Milestone

Be a voice for ThyCa! : Help ThyCa Mark our 15th Year Milestone Send your story, poem, essay, or photo sharing your thoughts and images of your experience with thyroid cancer, to publications@thyca.org.

Choose your theme: (1) My Thyroid Cancer Journey, (2) Voices of Survivors and Caregivers, (3) How ThyCa Helps Me. Send up to 500 words, in plain text in the e-mail message. Or send a photo in JPEG format, with a caption up to 25 words) through midnight, July 31, 2010. Please include your first name, last initial or name, and where you live.

A volunteer committee will review the writings and photos. We will showcase and publish several in the Photo Gallery and Survivors’ and Caregivers’ Album. We also will announce the winners in a future newsletter and will choose several for consideration for a future newsletter on the Web site.

Add your voice to ThyCa and embrace your community of fellow survivors, caregivers, and friends who care about helping others coping with thyroid cancer, and supporting research to defeat this disease.

Find out more about ThyCa;s 15th Anniversary Year and ways to help connect and grow our community— visit the Raise Awareness page.

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From the E-Mail Box

From a Parent …
Our daughter has Follicular thyca. She is 11 and just about to have her the second surgery. Can we order a (pediatric) backpack please? Such a great project!

From Illinois …
I was recently diagnosed and received a total thyroidectomy. I am in recovery and waiting for RAI treatment. I have just received from my doctor information and your website. I wish I had found it sooner.

From Georgia …
I work for an Endocrinologist in Georgia. We want to know if we can get more of the wallet cards to give to our thyroid cancer patients.

From Pennsylvania …
My mother (60 yrs old) has just been diagnosed with Papillary Thyroid cancer. The next step is to go through staging to determine in what stage of the disease she is in. She is currently living in Santiago, Chile where I will be traveling on May 14th to visit. I respectfully request the Free Packet for New Patients so I may bring it with me on my trip to Chile. I would also like to take this opportunity to thank everyone who has worked hard to put together this website which contains a wealth of valuable information to those who are new to this disease.

From Virginia …
I too am a thyroid cancer survivor and I would like to spread thyroid cancer awareness

From Maryland …
My sorority is participating in our community Relay for Life. We would like Thyroid Cancer brochures to pass our at the event. We would like 50 brochures if possible. Any handouts related to thyroid cancer are appreciated.

From Illinois …
Your website is a godsend. Please snail mail your resource packet to me.

From California …
Your Catherine Bell pamphlet is very popular with our patients; it makes thyroid disease relatable. Please send us another package of those pamphlets as well as the pamphlets “Do You Have Thyroid Cancer?” I would also appreciate any new info you might have that we can share with our patients. We have a very high number of thyroid and thyroid cancer patients.

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Invitation to Partner in Thyroid Cancer Awareness Month

We invite your organization to join us as a participating partner in Thyroid Cancer Awareness Month, September 2010.

This annual observance, sponsored by ThyCa since 2000, promotes thyroid cancer awareness for early detection, as well as care based on expert standards, and increased research to achieve cures for all thyroid cancer.

As a partner, we simply ask that you help to promote Thyroid Cancer Awareness Month. Your organization will be acknowledged as a participating partner in ThyCa’s newsletters and on our web site. We will also include information about your organization at the 13th International Thyroid Cancer Survivors’ Conference, both on the Resource Tables and in the Program Booklet given to all attendees.

Materials and help are free of charge upon request. Your participation will greatly benefit people around the world. To find out more, e-mail us at outreach@thyca.org or visit our Raise Awareness page.

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Have You Visited Our Web Site Lately?

We’re excited to report that our web site receives more than 300,000 hits per month —more than 10,000 each day.

New additions during May included a link to a medical journal article on management of of lymph node metastases in medullary thyroid cancer, the latest issue of ThyCa News Notes, the newest local support group pages, our committee coordinators, and more.

More than 650 web pages provide extensive information about all types of thyroid cancer, connections to a broad range of free support services, and details about awareness campaigns, as well as fundraising for thyroid cancer research.

Free downloadable publications include the Free Low-Iodine Cookbook in English, Spanish, and French, plus dozens of other publications. A Chinese language translation is also in progress.

Thank you very much to the more than 50 thyroid cancer specialists who provide their input and expertise, and to the many dozens of volunteers on ThyCa’s Publications and Web Site Teams.

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Low-Iodine Recipe of the MonthContributed by Stephanie W.

Banana Nut Bread

2 egg whites
1/2 cup canola oil
3/4 cup sugar
1 teaspoon vanilla
1/4 cup applesauce
1 1/2 cups flour
1/2 teaspoon baking powder
1 teaspoon cinnamon
1/2 cup chopped walnuts
2 large ripe bananas, mashed
Mix eggs, oil, sugar, vanilla, and applesauce with a spoon. Then stir in dry ingredients. Add bananas and chopped nuts. Stir until well mixed. Bake in loaf pan at 375 degrees until done (50-60 minutes).

Thank you, Stephanie! We are including your recipe in the 7th edition of the FREE Downloadable Low-Iodine Cookbook.

While waiting for the new 7th edition of the Low-Iodine Cookbook, you can still download the 6th edition of theLow-Iodine Cookbook in English for free, with more than 250 favorite recipes from more than 100 generous volunteers.

The Cookbook is also available in Spanish and in 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.

The expanded 7th Edition is coming soon.

If you’d like to contribute your favorite recipe or tip, send it to recipes@thyca.org.

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Follow ThyCa on Facebook

ThyCa: Thyroid Cancer Survivors’ Association, Inc. is now on Facebook (Group Name: THYCA).

Thank you to everyone who’s already become a THYCA Friend or Fan! Send us your messages and suggestions!

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Help Support the 2010 Rally for Research

Thanks to generous contributions and special fundraising events, ThyCa has awarded new thyroid cancer research grants every year starting in 2003. These grants support our goal of cures for all thyroid cancer and a future free of thyroid cancer. We plan to award new research grants in 2010.

You can help support the Rally for Research. For details about the Rally for Research, donation opportunities, special events, Quarters for a Cure, and information about ThyCa’s past and future Research Grants, visit the Rally for Research page.

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You’re Invited To Become a Member

Help us sustain, strengthen, and extend our services. We invite you to join 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. You may join as a 1-year member ($25), 2-year member ($45), or lifetime member ($225).

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Events Preview

  • Every Month. ThyCa’s Thyroid Cancer Support Group Meetings in Your Community.
  • Friday, June 18, 2010, Chicago, Illinois. Cancer-Related Legal Issues. Free educational conference sponsored by the Cancer Legal Resource Center.
  • Saturday, June 26, 2010. Houston, Texas. Free One-Day Conference on Multiple Endocrine Neoplasias, sponsored by M.D. Anderson Cancer Center.
  • Saturday, July 17, 2010, Stanford, California. The California Thyroid Cancer Survivors’ Workshop with Physician Speakers.
  • September 2010. Thyroid Cancer Awareness Month. Sponsored by ThyCa: Thyroid Cancer Survivors’ Association, Inc.
  • Friday, October 8, 2010, Los Angeles, California, at UCLA Medical Center. Cancer-Related Legal Issues. Free educational conference sponsored by the Cancer Legal Resource Center.
  • The 13th International Thyroid Cancer Survivors’ Conference
    October 15-17, 2010 in Dallas, Texas
    Sponsored by ThyCa: Thyroid Cancer Survivors’ Association, Inc.
  • The 9th Annual Dinner/Auction Fundraiser for Thyroid Cancer Research.
    October 16, 2009 in Dallas, Texas
    Sponsored by ThyCa: Thyroid Cancer Survivors’ Association, Inc.

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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.

Every day, numerous people distribute ThyCa outreach materials to their physicians, making them aware of a resource that can benefit their patients dealing with a thyroid cancer diagnosis.

Your generous support is what makes it possible to sustain, strengthen, and expand our services and outreach. It only takes a minute to make a secure donation online in support of ThyCa’s work (or you are welcome to donate by mail to ThyCa, P.O. Box 1102, Olney, MD 20830-1102), so click here to give.

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Your Ideas?

What sections of ThyCa’s web site do you find most helpful? What suggestions do you have for ThyCa’s web site? E-mail your answers and ideas to publications@thyca.org.

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About ThyCa NEWS NOTES
Copyright (c) 2010 ThyCa: Thyroid Cancer Survivors’ Association, Inc.

Thank you to our writing, editing, and proofreading team for this issue of the newsletter: Leah Guljord, John Oaks, Pat Paillard, Barbara Statas, Stephanie W., Cherry Wunderlich, and Gary Bloom.

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

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.

ThyCa: Thyroid Cancer Survivors’ Association, Inc. is a national non-profit 501(c)(3) organization (tax ID #52-2169434) of thyroid cancer survivors, family members, and health care professionals.

We are dedicated to support, education, and communication for thyroid cancer survivors, their families, and friends, as well as to public awareness for early detection, treatment, and lifetime health monitoring, and to thyroid cancer research fundraising and research grants.

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