ThyCa NEWS NOTES – May 2008

In This Issue

Lotsa Helping Hands—New Free Service

ThyCa is pleased to be partnering with Lotsa Helping Hands, a free online caregiving coordination service.

Lotsa Helping Hands can help you or someone you love to easily organize family members, friends, and others during times of medical crisis, family caregiver exhaustion, or when caring for an aging loved one.

Whether coordinating volunteers for meals, rides, or visits, or just sharing photos, medical status updates, well wishes, or vital medical, legal, or financial information with the selected members of your community, a ThyCa/Lotsa Helping Hands private web community can help.

This free online service helps you schedule the everyday tasks of your friends, family, and co-workers who are helping to support you and your loved one.

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ATA and ThyCa Issue Joint Press Release

Thyroid Cancer Experts and Survivors Collaborate To Provide 2008 Thyroid Cancer Research Grants

(May 1, 2008) —The American Thyroid Association (ATA) and ThyCa: Thyroid Cancer Survivors’ Association, Inc. are awarding two new research grants in 2008 and renewing two grants on thyroid cancer, one of the few cancers significantly increasing in the number of newly-diagnosed patients.

ThyCa’s grants are the first-ever thyroid cancer research grants to be funded by thyroid cancer patients, caregivers, and friends. The ATA and ThyCa have been working together to provide research funds to new investigators for thyroid cancer research projects since 2003.

“ThyCa: Thyroid Cancer Survivors’ Association is thrilled to raise much-needed funds for thyroid cancer research and is grateful for the opportunity to work with the ATA. We’re grateful to our thousands of donors and pleased to provide these funds to the best thyroid cancer research projects proposed by young investigators, because more research on thyroid cancer is urgently needed,” says ThyCa Executive Director Gary Bloom.

The grants are open to researchers worldwide. An independent expert ATA panel rigorously evaluates the grant proposals and selects the projects to be funded. The ATA panel is made up of thyroid cancer experts, thyroidologists, and thyroid surgeons. The ATA also supports the administrative costs of the grant review process.

“The ATA values its relationship with ThyCa furthering its mission to support research of thyroid cancer and thyroid disease. We are proud of the invaluable public service by ATA members to the research review committee,” said Richard Kloos, M.D., secretary/chief operating officer of the ATA.

Read the complete news article.

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Clinical Trials: Questions Patients and Caregivers Ask

Now available on our web site are lists of questions and points to consider when looking into participating in a clinical trial of a new treatment of thyroid cancer.

These checklists are useful when thinking about clinical trials for treatment of any disease. They are also helpful when considering taking part in a clinical trial on the prevention, diagnosis, or ongoing monitoring of thyroid cancer or another disease.

Patti Malloy and Clayton and Rose Twigg, ThyCa volunteers in Ohio, have generously shared their perspectives on clinical trials. Patty, Clayton, and Rose also have led many survivor/caregiver roundtables at our conferences. We look forward to seeing them in St. Louis in October, at the 11th International Thyroid Cancer Survivors’ Conference.

Read their helpful information and checklists.

Thank you, Patti, Clayton, and Rose!

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Joni Eskenazi Named ThyCa Board Member Emeritus

We are pleased to announce that ThyCa Volunteer Joni Eskenazi of Mercer Island, Washington, has been named a ThyCa Board Member Emeritus, in recognition of her outstanding service on the ThyCa Board.

During her Board tenure beginning in 2001, Joni created the role of Director of Fundraising and developed numerous fundraising projects, including the annual silent/live auction for thyroid cancer research hosted annually at the Thyroid Cancer Survivors’ Conference. This important event has netted hundreds of thousands of dollars, which have contributed to research grants for the benefit of everyone with thyroid cancer.

Joni also initiated the Tribute Cards and the year-round Rally for Research. Joni also mentored anyone who stepped forward with a fundraising project on ThyCa’s behalf. Her efforts have inspired numerous other volunteers to step forward with events and behind-the-scenes activities.

Joni’s primary interest is fundraising for thyroid cancer research. Beyond this, she is very interested in promoting and supporting all of ThyCa’s support and education efforts. The commitment and energy Joni has put into ThyCa, especially fundraising for research, has made a big difference for all, in bringing hope for urgently-needed cures for all thyroid cancer.

Thank you, Joni!

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Jacob Robbins, M.D. —A Tribute

We are sad to report that Jacob Robbins, M.D., distinguished thyroid cancer researcher at the National Institutes of Health in Bethesda, Maryland, for 54 years, and wonderful friend of ThyCa for the past 10 years, passed away on May 12, 2008.

Dr. Robbins, who received his medical degree from Cornell in 1947, was internationally recognized for his research on the thyroid, including pediatric thyroid cancer resulting from radioactive fallout. In recent years, his research focused on the effects over the long term from the fallout from the 1986 Chernobyl nuclear accident in Ukraine.

Thyroid cancer patients in clinical trials at the National Institutes of Health greatly appreciated Dr. Robbins for his expertise and his kindness. One ThyCa member recalled how Dr. Robbins always took extra time to stop by and offer encouragement to the patients hospitalized at the Clinical Center for treatment. Dr. Robbins always made time for patients, whether they were his, or in the care of other physicians.

Dr. Robbins also gave a memorable talk to a large crowd at a ThyCa Conference, on “Lessons from the Chernobyl Accident: Thyroid Cancer and Poland’s use of Potassium Iodide.”

The legacy of Dr. Robbins’s dedication to patient well-being and his many contributions to the advancement of knowledge about thyroid cancer will continue to be remembered and to benefit people everywhere.

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Spring Workshops Draw Record Numbers

ThyCa’s four spring regional workshops, drew well over 400 attendees from around the United States as well as from Australia and Ukraine. The workshops took place in Chicago, Illinois; Dallas, Texas; Stowe, Vermont; and Falls Church, Virginia.

Our thanks to the distinguished physicians, other specialists, survivors and caregivers who made these free events so informative, supportive, and successful. If you’re interested in developing a Workshop for Spring 2009, please contact Theresa Wickerham (support_coord@thyca.org).

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Calendar — Coming Events

See Calendar updates.

Every Month
Local Thyroid Cancer Support Groups. More than 70 groups. Meetings are held in states coast to coast, as well as Costa Rica and Philippines. Each group has its own web page. These meetings are wonderful ways to talk with other survivors and caregivers face to face. For meeting locations, times, and contacts, visit our web site’s Local Support Groups page.

June 12-14, 2008
Third Annual Hypoparathyroidism Association Patient Conference, sponsored by the nonprofit Hypoparathyroidism Association, Inc. Location: Legacy Hotel (Ramada Inn), Rockville, Maryland. The conference will feature selected speakers from the medical community, pharmaceutical industry, and government to help increase your knowledge about hypoparathyroidism, what is being done to find more effective means of treating it, and how people with hypoparathyroidism can improve their lives and live with hypoparathyroidism. For more information, go to www.hpth.org.

September 2008
Thyroid Cancer Awareness Month. Sponsored by ThyCa: Thyroid Cancer Survivors’ Association, Inc. Find out how you can help raise awareness for early detection, and connect others with ThyCa’s free support services, resources, and special events.

Friday, Saturday, Sunday, October 17, 18, and 19, 2008
St. Louis, Missouri. The 11th International Thyroid Cancer Survivors’ Conference. Sponsored by ThyCa: Thyroid Cancer Survivors’ Association, Inc. Conference location: Sheraton Westport Hotel, 191 Westport Plaza, St. Louis, MO 63146. Learn from experts and share experiences with others coping with thyroid cancer. More than 80 session choices: The latest research, advances in treatment and follow-up, insurance and employment issues, and coping skills for well-being. More than 50 speakers will include leading physicians and other specialists. The hotel has arranged special room rates for conference attendees for single, double, triple, or quad rooms. Details and the registration form will be added to the ThyCa web siteConferences page.

Saturday, October 18, 2008 from 6 p.m. to 9 p.m
St. Louis, Missouri. ThyCa’s 7th Annual Dinner/Auction to Support Research. Sponsored by ThyCa: Thyroid Cancer Survivors’ Association, Inc. To be held in conjunction with the 11th International Thyroid Cancer Survivors’ Conference. At the Sheraton Westport Hotel, 191 Westport Plaza, St. Louis, MO 63146. Details on the ThyCaweb site Conferences page.

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ThyCa Exhibits at Medical Meetings and Community Health Events

This spring, numerous ThyCa volunteers have helped raise awareness and connect others to ThyCa’s free support services, publications, and special events. Thank you all!

A few recent events, and the ThyCa representatives:

  • American Association for Cancer Research Scientist-Survivor Program, in California. Joel Amromin, ThyCa Los Angeles Support Group Facilitator and ThyCa Web Site Team.
  • American Association of Clinical Endocrinologists 2008 Annual Meeting, in Florida. Leah Guljord, ThyCa Spacecoast Support Group Facilitator, Low-Iodine Cookbook Editor, and Membership and Spirit Items Coordinator, and Jan Halzel, ThyCa Medullary Thyroid Cancer E-Mail Support Group Moderator and ThyCa Medical Advisor.
  • American Thyroid Association 2008 Spring Meeting, Washington, DC. Barbara Statas, ThyCa Outreach and Publications Volunteer, and Cherry Wunderlich, ThyCa Outreach and Publications Coordinator.
  • National Comprehensive Cancer Network Annual Conference, in Florida. Christine Ciletti, ThyCa South Florida Support Group Co-Facilitator, and Fran Goodstat, ThyCa Volunteer.
  • Northwestern University Head and Neck Cancer Fair in Illinois. Jessica Brunner and Tina Stipati, ThyCa Chicago Support Group Co-Facilitators.
  • Society of Nuclear Medicine Regional Meeting in Virginia. Cherry Wunderlich, ThyCa Outreach and Publications Coordinator.
  • Stowe Weekend of Hope in Vermont. Jaime Toth, ThyCa Southern Connecticut Support Group Facilitator.
  • Tennessee Comprehensive Cancer Control Coalition 2008 Summit. Sheila Williams, ThyCa Midsouth Support Group Facilitator and Thyca E-Mail Support Group Moderator.
  • THANC Foundation Thyroid Disease Course in New York. ThyCa Materials Exhibit.

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From the Mailbox — A HaikuBy Diane Schetky of Maine

Thyroid Surgery

My scar smiles at me
From the mirror each morning
Better than a frown

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Low-Iodine Recipe of the Month

Tacos
Contributed by Jamie M.

1 pound ground beef or other meat preference

Seasoning Mix:
2 teaspoon cumin
1/2 teaspoon oregano
1/2 teaspoon noniodized salt
1 teaspoon black pepper
1/2 teaspoon garlic powder
1/2 teaspoon onion powder
1/2 teaspoon cayenne pepper (more or less depending on your spice tolerance)
1 teaspoon corn starch

2/3 cup water

Directions:
In small bowl mix together dry ingredients, set aside. Brown and drain beef. Add seasoning mix and water. Reduce heat and simmer 2 to 3 minutes. Enjoy!

Jamie comments: “I made a taco salad and scooped it up using the cracker recipe from the ThyCa Cookbook, but I think you can find special tortillas at a health market if you prefer.” (Editor’s Note: Page 40 of ThyCa’s free Cookbook has a recipe for flour tortillas. In the grocery store, look for tortillas made from corn, lime, and water.)

Thank you, Jamie! Your recipe will be added to the next edition of the FREE Downloadable Low-Iodine Cookbook. Download the cookbook, with more than 250 favorite recipes from more than 100 generous volunteers:

Send your favorite recipe to recipes@thyca.org, for a future newsletter and the cookbook’s next edition.

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What ThyCa Can Do For You

  • Give free information and numerous downloadable publications on thyroid cancer
  • Offer support via the Internet, local support group meetings, and person-to-person contacts
  • Supply materials on thyroid cancer that you can’t find elsewhere
  • Offer you an annual conference and regional workshops where you can meet other survivors, get answers to your questions about thyroid cancer, treatments, medications, and more, from doctors who are approachable and experts in thyroid cancer
  • Make available to you, via the internet, printable flyers, articles, and newsletters that give the latest information on thyroid cancer
  • Have people available who have been through this disease and are very willing to share their experiences and help you out

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Get Involved— How To Help

Five ways you can help:

  • Tell others about www.thyca.org and our toll-free survivors’ line 1-877-588-7904
  • Raise Awareness of Thyroid Cancer—Get Free Materials
  • Volunteer: We’ll help you find an activity to match your time and talents.
  • Become a ThyCa Member: Our thanks to all our one-year members, two-year members, and lifetime members.
  • Donate: Donate by mail or online, or give a tribute gift in honor of someone special.

Our thanks to all the wonderful volunteers who are helping ThyCa with awareness, outreach, support services, and special events, as well as fundraising to sustain and strengthen our services and support thyroid cancer research.

ThyCa NEWS NOTES
Copyright (c) 2008 ThyCa: Thyroid Cancer Survivors’ Association, Inc.

Thank you to ThyCa’s Publications Committee as well as Jaime M. and Diane Schechty for writing, editing, and proofreading this newsletter.

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

We invite you to send News Notes to your family and friends. For permission to reprint in another electronic or print publication, please contact us at outreach@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 www.thyca.org.