ThyCa News

ThyCa News Notes - January 2015

03/2015

In This Issue:


Thyroid Cancer Diagnoses To Stay About the Same and Deaths To Rise in 2015

ThyCa Urges Neck Checks, Provides Free Services, Materials in 7 Languages

A total of 62,450 people will be diagnosed with thyroid cancer in 2015 in the United States, slightly fewer than the 62,980 in 2014, while deaths from thyroid cancer will increase by 3% to 1,950, up from 1,890 in 2014, ThyCa reports based on information from the American Cancer Society and the U.S. Department of Health and Human Services. 

Thyroid cancer is now the fifth most common cancer in women, and three of every four people diagnosed with thyroid cancer are women. The disease affects people of all ages, from young children to seniors. About half of people diagnosed are under age 50. The incidence of thyroid cancer has increased rapidly over the past two decades. 

Read more on our website, linked from our home page.

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2015 Is ThyCa’s 20th Anniversary Year! 

Thank you to all the wonderful volunteers who provide support, lead support groups, host events, and do much more to help everyone affected by thyroid cancer, and raise awareness and research funds. 

Help us celebrate our 20th Anniversary Year. Share your suggestions at publications@thyca.org and we’ll include them in upcoming bulletins and on our web site. 

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FDA Approves Natpara® for Hypoparathyroidism

January 23, 2015—The U.S. Food and Drug Administration (FDA) has approved Natpara® (parathyroid hormone) as an adjunct to calcium and vitamin D to control hypocalcemia in patients with hypoparathyroidism. Hypoparathyroidism is a rare endocrine disorder characterized by insufficient levels of parathyroid hormone (PTH). 

About three-quarters of the people with hypoparathyroidism had thyroid surgery, usually for thyroid cancer, and experienced loss or damage to their parathyroid glands, significantly affecting their calcium levels.  

Natpara® is expected to be available in the second quarter of 2015 in the United States. In Europe, the European Medicines Agency (EMA) has validated and initiated its review of NPS Pharma’s marketing authorization application for Natpar™.  

Natpara® is a bioengineered replica of human PTH. It is manufactured by NPS Pharma. It is recommended only for patients who cannot be well controlled on calcium supplements and active forms of vitamin D alone. 

At the FDA hearing on Natpara® in 2014, ThyCa Executive Director Gary Bloom spoke in support of the FDA approval of Natpara®. Each ThyCa Conference has sessions on hypoparathyroidism, a challenging disorder requiring lifelong management. 

ThyCa’s web site will add more information about Natpara® in the future. 

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Proposals Due by January 31 2015, for ThyCa’s New Thyroid Cancer Research Grants

ThyCa: Thyroid Cancer Survivors’ Association Inc. is proud to announce the 14th year of our research grants program, with grants open to researchers and institutions worldwide. 

We have already awarded 47 grants totaling more than $1.3 million to researchers in 5 countries: France, Germany, Sweden, Switzerland, and United States. 

ThyCa will award six research grants in 2015, three new grants plus three continuation grants. 

One new grant is for research on follicular-cell-derived thyroid cancer (papillary, follicular, anaplastic, variants). 

Another new grant is for research on medullary thyroid cancer.  

For the third grant, research on any type of thyroid cancer is eligible. This grant is named The Ric Blake Memorial Thyroid Cancer Research Grant, in memory and honor of ThyCa co-founder Ric Blake. 

Proposals are due by January 31, 2015. Click Here for the grant proposal web site, which has more details and information on how to submit proposals.  

An independent expert panel of the American Thyroid Association will select the grant recipients. Our thanks to ATA for your support. 

ThyCa invites everyone to join us in our quest to find cures and new treatments for all thyroid cancer.  

Thank you to everyone who contributes to our Research Funds. Together, we’re making progress toward our dream of cures for all thyroid cancer. 

To find out more about the ThyCa Research Funds, the annual Rally for Research, and how to donate, click here

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From the E-Mail Inbox

From Virginia
I would like to request some of your Thyroid Cancer Basics handbooks. I am an endocrinologist and see quite a few thyroid cancer patients. I recently got a copy of your handbook from the thyroid course at Washington Medstar and it looks like an excellent patient resource.

From Massachusetts
I was wondering if you could mail me some information on thyroid cancer and anything you think may be helpful. I was just diagnosed with papillary thyroid cancer about 2 weeks ago. Thank you. 

From California
I am the HR Generalist at my company.  I would like to receive some free brochures to spread awareness to our employees regarding the thyroid.

From Texas
Please send 50 cards to pass out to staff members at our school. My husband passed away with Papillary thyroid cancer. He was 54 years old. I like to keep his memory alive by educating people about Thyroid Cancer.  Thank you. 

From South Africa
Good day. Kindly send me information re thyroid cancer. In November last year I had a right thyroid lobectomy and it was discovered that I have papillary thyroid carcinoma 

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A 20th Anniversary Memory: The World’s First Local Support Group

In 1996, Ric Blake of New Hampshire started a face-to-face thyroid cancer support group in Massachusetts. Ric had been a member of ThyCa’s first online thyroid cancer group for more than a year.

This group was the first face-to-face thyroid cancer support group. Today, there are more than 120 Local ThyCa Support Groups in communities in 7 countries.

Ric was one of ThyCa’s 17 co-founders. We are honored to remember him through one of our annual thyroid cancer research grants, described above in the first article. 

The photo shows Ric and Diane Blake at the 2009 Conference. Read more about Ric and his many contributions.

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ThyCa Inspire Online Support Community Grows to More than 15,000! 

We’re excited to report that the ThyCa Inspire Online Support Community has grown to more than 15,000 members! This is a great place to share experiences with your thyroid cancer, wherever you live. 

Get details about the ThyCa Inspire Group and all our support services on our Support Groups page.

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Conference Videos Now on ThyCa YouTube Channel

We’re excited to announce that videos from the 17th International Thyroid Cancer Survivors’ Conference are now available on the ThyCa YouTube Channel. Click here for these videos, and more ThyCa videos.

Presentations by seven distinguished speakers are now available. We’ll add more soon!

  • Preventing and Solving Issues for Your Mouth, Salivary Glands, and Teeth from Radiation Treatment, Both Radioactive Iodine and External Beam Radiation. Richard C. Cardoso, D.D.S., M.S., Oral Medicine Specialist, University of Texas, M.D. Anderson Cancer Center
  • Thyroid Fine Needle Aspiration Biopsy: What Do I Do After a Malignant or Indeterminate Result, Either During Diagnosis or Recurrence? When Do I Need a Second Opinion from a Pathologist? Sharon Sams, M.D., Pathologist, University of Colorado Health Sciences Center
  • Thyroid Surgery Including Minimally Invasive Techniques presented by Christopher D. Raeburn, M.D., Surgeon, University of Colorado Health Sciences Center
  • Medullary Thyroid Cancer: Ask a Doctor Your Questions. Steven I. Sherman, M.D., Endocrinologist, University of Texas, M.D. Anderson Cancer Center
  • Understanding the Biology of Medullary Thyroid Cancer. Gilbert Cote, Ph.D., Molecular Geneticist, University of Texas, M.D. Anderson Cancer Center
  • Complexity in Thyroid Cancer: Recent Research Results and Studies at the Center for Personalized Cancer Therapeutics. Peter Smibert, Ph.D., Regenerative Biologist, Center for Personalized Cancer Therapeutics at the Mount Sinai Hospital in New York City
  • New Targeted Therapies for Treatment and Management of Progressing Metastatic Thyroid Cancer. Rebecca Schweppe, Ph. D., Researcher, University of Colorado Health Sciences Center
  • Afirma Thyroid FNA Analysis: Giving More Doctors a More Complete Story from Thyroid Nodules. Ryan Hungerford, M.D., Endocrinologist, Southern Oregon Internal Medicine 

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Thyroid Cancer Support Groups Meet and Provide Phone, E-Mail Support

In ThyCa’s local support groups, patients and caregivers meet in person, share thyroid cancer information, their experiences with their thyroid cancer, insights on how they are coping with thyroid cancer, and support one another. 

ThyCa Portland, Maine, will start meeting on March 21, 2015. This group and ThyCa Essex, United Kingdom, join our network of more than 120 support groups in 7 countries—around the United States and in Australia, Canada, Colombia, Costa Rica, Philippines, and the United Kingdom. 

To see if there is a group in your area, go to the Support Groups page.

Our support groups are free and open to any and all survivors and their families and friends. 

Want to start a group in your area? Either contact the ThyCa Support Group Coordinator at support_coord@thyca.org or else fill out the form (available in Microsoft Word or PDF) on our Support Groups page.

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The Power of Togetherness – Share Your Story

ThyCa supporters, members, and visitors, it’s your chance to share your story! 

Tell us, the ThyCa community, how ThyCa has helped you or how you’ve helped others.

Maybe you joined one of our support groups and met some endearing people who have inspired you. 

Maybe you attended one of our conferences and learned something that has heightened your awareness of yourself in some way, thyroid cancer, or a potential new treatment. 

Maybe you shared information with someone in need. Maybe you helped connect someone else to ThyCa. 

So many possibilities! 

We’d love to hear from you. Your story might inspire others to seek out help or information or get involved. 

Please send us your story and we’ll share as many as we can in future publications. 

Photos are welcome, too! Send them in JPEG format and tell us who or what they show.

It’s our 20th Anniversary Year, and we’re eager to hear from you. To share your story, e-mail us at publications@thyca.org

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January Is Thyroid Awareness Month, for all Thyroid Diseases

Millions of people have thyroid disorders such as hypothyroidism and hyperthyroidism, in addition to the people who are living with thyroid cancer. 

January is Thyroid Awareness Month, sponsored by the American Association of Clinical Endocrinologists (AACE). This is AACE’s thyroid awareness web site.

ThyCa is pleased to cooperate in support of this observance, and to provide free thyroid cancer awareness materials. You may download thyroid cancer materials from our home page and our Raise Awareness page. Or e-mail us at thyca@thyca.org to ask for materials by mail. 

We also invite medical professionals to request free awareness and educational materials in bulk for your patients. Use our online order form, or fax or mail the printed form. Both forms are available on our Medical Professionals page. http://www.thyca.org

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Thyroid Infographic Describes all Thyroid Disorders 

A new Thyroid Disease Infographic gives a quick overview of all types of thyroid disorders, including hypothyroidism, hyperthyroidism, and thyroid nodules and thyroid cancer.
View it here: http://thyca.org Thank you very much to the Hormone Health Network, the patient education group of The Endocrine Society for developing this informative resource and sharing it with us. 

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Free Seminar in Albuquerque 

On Tuesday, January 13, 2015, the ThyCa Albuquerque, New Mexico, Support Group is hosting a discussion on hormones, prescription drugs, and supplements with pharmacist Frank Latino, R.Ph., M.S. Details are on the group’s web page.  

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Visit our One-Click Events Calendar 

For 2015 Thyroid Cancer Events, reach this handy page with all the future events with just one click from our Home Page. 

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Invitation: Become a Member 

No one should have to face a diagnosis of thyroid cancer alone. Your membership dues help support ThyCa's efforts to provide our services to survivors and their families around the world. You may join as a 1-year, 2-year, or lifetime member of ThyCa. 

Membership is open to anyone interested in thyroid cancer and supporting ThyCa’s efforts. To join, online or by mail, visit our Membership page.

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Nonprofit Triage Cancer Helps Patients and Caregivers

Health insurance, personal finance, workplace and disability issues. These are among the many practical challenges that come with a diagnosis of thyroid cancer. 

At the ThyCa conferences, attorneys and other specialists speak and answer questions about these important topics. 

We are pleased to partner with the nonprofit Triage Cancer and thank Monica Bryant, Esq., one of its principals, for speaking at our last two conferences. The organization’s informative web site offers further information and resources.  

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Yoga and More, a Fundraiser for ThyCa


You’re invited to join Donna Sherman, M.S.W., Yoga Teacher for a fun afternoon of yoga, music, snacks, and thyroid cancer awareness, from 2:30 p.m. - 4:30 p.m. in New Paltz, New York. Help raise awareness and money for thyroid cancer research while polishing your yoga glow. 

This event will benefit ThyCa’s Rally for Research). Donna was a speaker at the 16th International Thyroid Cancer Survivors’ Conference. Click here for the details about the March 14 event.

Thank you, Donna!  

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Did you know?

Before 1995, there were no support groups for thyroid cancer anywhere in the world. Early that year, Karen Ferguson, who began her follicular thyroid cancer journey in 1994, connected with a few AOL thyroid cancer survivors and created the world’s first online thyroid cancer support group. That was how ThyCa started. 

Karen still actively volunteers for ThyCa in this, our 20th Anniversary Year. Thank you, Karen! 

We’ll have more details about ThyCa’s 20th Anniversary in our bulletins and on our web site. 

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Low-Iodine Recipe of the Month
Contributed by Ruth C.

Peanut Butter Popcorn
makes 16 cups popped corn

Mix and boil the following ingredients for 2 minutes:

1 cup corn syrup
½ cup unsalted peanut butter
1 cup brown sugar
¼ teaspoon salt
½ teaspoon vanilla

Pour the mixture over the popcorn.

Ruth writes, “This is my go-to sweet during my low iodine diet times...  Delicious!”

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

Free and Downloadable: Click on the Cookbook link on our home page 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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Follow Us

Joining together online, through our webinars, or face-to-face in our support groups, workshops, and conferences is empowering. 

To all of you, our friends, fans, followers, volunteers, advisors, supporters...Thank You!  

Our support of each other — whether giving or receiving — is an incredible gift. Thank you for joining us. 

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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 makes it possible to sustain, strengthen, and expand our services and outreach. 

It only takes a minute to make a 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). 

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Get Involved 

This weekly bulletin and ThyCa’s many other free services, events, publications, and thyroid cancer research grants are made possible through the generous financial and service contributions of our donors and volunteers. Thank you! 

We invite everyone’s contributions, small or large. Together we make a difference! 

Please share this Bulletin with your family and friends. If you would like to suggest topics or contribute an article, please contact us at publications@thyca.org

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About this Newsletter and ThyCa

Copyright (c) 2015 ThyCa: Thyroid Cancer Survivors' Association, Inc. 

This newsletter and ThyCa’s many other services and thyroid cancer research grants are made possible through the generous contributions from our donors and volunteers. Thank you! 

We invite everyone’s contributions, small or large, financial and volunteer service. Together we make a difference! 

Thank you to our writing, editing, and proofreading team for this issue: Lisa Cole, Ruth C., Kristy F., Leah Guljord, Pat Paillard, Barb Statas, Theresa Wickerham, Cherry Wunderlich, and Gary Bloom. 

You’re invited to share this Bulletin with your family and friends. If you would like to suggest further topics or contribute an article, please contact us at publications@thyca.org

The information 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, awareness for early detection through Thyroid Cancer Awareness Month and year-round campaigns, and fundraising for thyroid cancer research. 

Visit our website for information about thyroid cancer, events, and how to help. Ask 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 website.


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