Boston Thyroid Cancer Seminar To Take Place on September 29, 2007

On Saturday, September 29, 2007, the Boston Thyroid Cancer Survivors’ Seminar will be held at Massachusetts General Hospital.

The seminar and parking are FREE, and advance registration is not required. The seminar will be held from 9 a.m. to 4 p.m. in the O’Keeffe Auditorium at Massachusetts General Hospital, 55 Fruit Street, Boston, Massachusetts 02114.

This event is organized by the ThyCa Boston Thyroid Cancer Support Group, an affiliate of ThyCa: Thyroid Cancer Survivors’ Association, Inc., a national nonprofit, organization dedicated to survivor education, outreach, and research advocacy.

The program will begin at 9 a.m. with registration, a free continental breakfast, and an opportunity for people with thyroid cancer, one of the few cancers that is increasing in incidence, to meet informally with other survivors and caregivers.

Speakers include these physicians:

Bruce A. Chabner, M.D., Clinical Director, Massachusetts General Hospital Cancer Center, will discuss current research and clinical trials for thyroid cancer.
Gilbert H. Daniels, M.D., Endocrinologist, Co-Director Thyroid Clinic, Massachusetts General Hospital, will discuss everything you want to know about thyroid cancer in a Q&A format.
Yariv J. Houvras, M.D., Ph.D., Oncologist, Massachusetts General Hospital Cancer Center, will discuss “Cancer Biology 101: Oncogenes and Tumor Suppressors.”
Jeffrey F. Krane, M.D., Ph.D., Chief, Head and Neck Pathology Service, Brigham and Women’s Hospital, will discuss how thyroid cancer is diagnosed.

Seminar organizers are committed to helping other survivors because thyroid cancer is a disease that impacts survivors every day from the time of diagnosis through the rest of their lives. They must learn to cope with periodic tests and treatments, as well as daily medication, that can significantly affect the quality of their lives.

ThyCa’s educational events are just part of the free resources the national nonprofit organization has created to help survivors and caregivers around the world, raise public awareness for early detection, and support thyroid cancer research. ThyCa sponsors volunteer-led local support groups in Connecticut, Massachusetts, and New Hampshire, as well as throughout the United States and in Costa Rica and Philippines.

On October 19-21, 2007, the 10th International Thyroid Cancer Survivors’ Conference will take place in San Francisco, California. For the list of confirmed speakers, visit www.thyca.org.

Free materials and information about thyroid cancer, local support groups, one-to-one support, the conference, and other special events are available at ThyCa’s Web site or by calling ThyCa Survivors’ Toll-Free Telephone Service 877-588-7904 or e-mailing to thyca@thyca.org.

ThyCa: Thyroid Cancer Survivors’ Association, a national nonprofit 501 (c)(3) organization of thyroid cancer survivors, families, friends, and health care professionals, is pleased to announce the selection of Gary Bloom of Olney, Maryland, as Executive Director, effective September 10, 2007. ThyCa’s Board of Directors created this new position to support ThyCa’s tremendous growth in constituents and support services, outreach, and research advocacy over the past 12 years. Gary was selected by ThyCa’s Search Committee, led by Sara Brenner, Board Member and Director of Local ThyCa Support Groups, through an open nationwide search process and thorough review of candidates.

In collaboration with the Board of Directors, Gary will be responsible for day-to-day management to further ThyCa’s vision and strategic plan to further grow support services, education, and outreach, especially for underserved populations, as well as to foster research advocacy and alliances.

A thyroid cancer survivor since 1995, Gary Bloom served as Assistant Chair of the steering committee that developed ThyCa. He has served as Chair of ThyCa’s all-volunteer Board of Directors since 1999. In April 1999, he founded and became facilitator of ThyCa’s Washington, D.C. Thyroid Cancer Support Group, which meets monthly.

In addition to leading ThyCa’s management services, technology development, and conference planning, he has recruited and trained dozens of volunteers for ThyCa’s support services, outreach, and technology and administrative support. He is also strongly involved in research advocacy and in developing alliances with medical professional associations and patient support organizations.

Like most of ThyCa’s volunteers, Gary Bloom became involved in ThyCa because of being diagnosed with thyroid cancer. In 2001, he was selected for the National Institutes of Health National Cancer Institute’s advisory panel Consumer Advocates in Research and Related Activities.

For the past 18 years, he has been employed by a high-tech firm, first as controller, and later in a series of project management and development positions.

“As ThyCa continues to realize unprecedented growth, “ said Search Director Sara Brenner, “we are thrilled to bring on a full-time Executive Director who will steward the expansion of our services and enable ThyCa to serve more survivors and their families.”

Since its beginnings in 1995, ThyCa has grown and multiplied, expanding from one online chat room meeting weekly to providing a wide array of free support services and resources with help from more than 300 volunteers. Free services include more than 60 local support groups in the United States, Costa Rica, and Philippines; nine e-mail support groups; a Person-To-Person Network; a survivors’ toll-free number; a web site with more than 600 pages, with ongoing input and review from more than 50 physician specialists; a free online newsletter; and more than a dozen downloadable publications, including materials in Spanish.

The 10th International Thyroid Cancer Survivors’ Conference will be held on October 19-21, 2007, in San Francisco, California, and will feature 25 distinguished physicians plus more than 30 other speakers. ThyCa also sponsors Thyroid Cancer Awareness Month in September, year-round awareness activities for early detection, and research fundraising. This year is its fifth year of awarding thyroid cancer research grants.

Free materials and information about thyroid cancer, ThyCa’s free support services, and educational events are available by e-mailing to thyca@thyca.org, calling 1-877-588-7904, faxing to 1-630-604-6078, writing to PO Box 1545, New York, NY 10159-1545, or visiting www.thyca.org

Now Available at www.thyca.org, ThyCa: Thyroid Cancer Survivors’ Association

More than 100 thyroid cancer survivors have donated more than 250 of their favorite recipes to the newly published 6th edition of the free Low-Iodine Cookbook from the national nonprofit ThyCa: Thyroid Cancer Survivors’ Association. Thyroid cancer patients worldwide use the cookbook when on the brief diet used while preparing for the radioiodine scans and treatments often used with thyroid cancer.

The cookbook’s new expanded edition is downloadable free of charge from ThyCa’s web site www.thyca.org. The contributors have all used the temporary low-iodine diet themselves, usually for a one-to-two-week time period before a scan or treatment with radioactive iodine. They also contributed snack ideas and tips for how to make the most of the diet.

The guidelines came from numerous thyroid cancer specialist physicians and researchers who advise ThyCa and speak at the annual international thyroid cancer survivors’ conferences.

“Donating these low-iodine recipes is a way for people with thyroid cancer to do something positive for ourselves and for others,” says cookbook Editor Leah Guljord, West Melbourne, Florida, who is also Assistant Chair of ThyCa’s Board of Directors. “We are grateful to the generous volunteers who shared their recipes. These delicious recipes are the volunteers’ family favorites. They provide a wide array of choices for breakfast, lunch, dinner, and desserts, as well as appetizers, snacks, sauces, and spreads.”

“We invite everyone to share this free book with their families, friends, and physicians. Physicians, hospitals, and clinics are also welcome to download this cookbook and give copies to their patients.”

The free cookbook is one of many free resources and support services available from ThyCa: Thyroid Cancer Survivors’ Association (www.thyca.org). ThyCa also offers local support groups, one-to-one support through its Person To Person Network, e-mail groups, educational events, Thyroid Cancer Awareness Month each September, and year-round awareness programs. ThyCa also sponsors thyroid cancer research grants.

The 10th International Thyroid Cancer Survivors’ Conference will feature more than 80 session choices and will take place in San Francisco, California, on October 19-21, 2007.

ThyCa: Thyroid Cancer Survivors’ Association, Inc. is a national non-profit organization of thyroid cancer survivors, family members, and health care professionals, dedicated to education, communication, support, awareness for early detection, and thyroid cancer research fundraising and research grants. For more information, call 1-877-588-7904, send e-mail to thyca@thyca.org, write to PO Box 1545, New York, NY 10159-1545, or visit www.thyca.org.

ThyCa: Thyroid Cancer Survivors’ Assocation, Inc is proud to announce the addition of a new item to our Spirit Collection for Thyroid Cancer Awareness.

In collaboration with A Different Twist of Oriental, NC, ThyCa is now offering a beautiful turquoise-silver beaded bracelet. The eye-catching stretch-style bracelet is made of Turquoise Fiber Optic glass beads with sterling silver spacer beads and a silver ribbon.

The new bracelets are available in three sizes: 6 ½ inches, 7 ¼ inches, and 8 inches. To choose a size, measure just below the wristbone and add an inch. Each bracelet is available for $18, and the net proceeds benefit ThyCa’s awareness, outreach, support, and research funds.

“Many people have asked us for jewelry to help raise awareness about thyroid cancer, and we believe we have now found a great piece for doing just that” said Leah Guljord, ThyCa Spirit Items Coordinator and thyroid cancer survivor of West Melbourne, Florida. “ThyCa raises awareness year-round to increase early detection, because thyroid cancer is usually treatable when found early. We encourage everyone to ask their doctor for a neck check.”

ThyCa’s web site has photos of the bracelets, pill cases, wristbands, pins, and other thyroid cancer awareness items, plus an order form.

With each order or membership, ThyCa also includes free thyroid cancer awareness brochures and plastic wallet cards listing ThyCa’s free services and contact information.

ThyCa: Thyroid Cancer Survivors’ Association, Inc., is a national nonprofit organization of thyroid cancer survivors, families, and health care professionals. ThyCa’s free support services to cancer patients, as well as their families, caregivers, and friends, includes a network of more than 60 support groups, one-to-one support matched by diagnosis, online support groups, an award-winning educational web site providing more than 600 pages about thyroid cancer, free educational materials, and a free downloadable low-iodine cookbook.

ThyCa also sponsors Thyroid Cancer Awareness Month each September, as well as the only annual conference for thyroid cancer patients, families, and friends. The 10th International Thyroid Cancer Survivors’ Conference will held October 19-21, 2007, in San Francisco, California and will featuring top physicians in the field.

For more information visit www.thyca.org call toll-free 877-588-7904, or e-mail thyca@thyca.org.

ThyCa Volunteers Urge Everyone To Ask for a Neck Check for Early Detection

Thyroid cancer is one of the few cancers that has increased in incidence over the past several years. It will be diagnosed in a new record total of 33,550 people in the United States in 2007.

This is one of many reasons why ThyCa: Thyroid Cancer Survivors’ Association, Inc. sponsors Thyroid Cancer Awareness Month. September will highlight the year-round activities of ThyCa volunteers to:

increase thyroid cancer education;
raise awareness of the importance of early detection, treatment, and lifelong monitoring; and
inform the public about ThyCa’s free information, resources, and support. ThyCa also seeks to raise awareness of the need for more thyroid cancer research.

ThyCa encourages everyone to ask for a neck check the next time they visit their doctor. Signs to discuss with the physician include a lump or fullness in the neck, lymph node swelling, difficulty breathing or swallowing, or voice changes. A neck check can be done quickly. Most thyroid cancer is treatable if found early, but some types are aggressive and difficult to treat.

ThyCa’s web site has more than 600 pages of information about all types of thyroid cancer, diagnosis, treatment, research, clinical trials, questions to ask your doctor, local support groups, e-mail support groups, a calendar of coming events, the Rally for Research, and the 10th International Thyroid Cancer Survivors’ Conference, to be held this year on October 19-21, 2007, near San Francisco, California.

Web site visitors can also download ThyCa’s free publications, including the newly published 6th edition of the Low Iodine Cookbook, as well as fact sheets and online newsletters.

In addition, ThyCa’s web site has a section titled Raise Awareness with downloadable flyers entitled, “Find It Early” and “Know the Signs”, a fact sheet titled “About Thyroid Cancer”, and additional publications.

Free wallet cards and free awareness brochures featuring actor and thyroid cancer survivor, Catherine Bell, co-star of the hit TV series J.A.G., are also available.

ThyCa invites everyone interested to help with thyroid cancer awareness efforts in their communities. Among the activities and events during September:

In Pennsylvania, on Saturday, September 8, from 8:30 a.m. to 4 p.m., the University of Pittsburgh Medical Center and ThyCa are sponsoring the Pittsburgh Thyroid Cancer Seminar, with numerous physician speakers during the day. Details about this free event are at http://www.thyca.org/PittsburghSeminar09-2007.pdf.
In Maryland, on Saturday, September 15, from 10:30 a.m. to noon, Leonard Wartofsky, M.D., thyroid cancer specialist and past president of the American Thyroid Association and The Endocrine Society, will speak and answer questions at the monthly meeting of the ThyCa Washington, DC, Thyroid Cancer Support Group. Details are at http://www.thyca.org/sg/dc.htm.
In Indiana, a volunteer is working with her surgeon on an awareness campaign using the literature and materials from ThyCa.
In Michigan, a volunteer plans to place an article each week in September in the weekly employee newsletter at her workplace.
In New Jersey, a corporate nurse will give a presentation and distribute thyroid cancer awareness brochures and wallet cards to the company’s more than 400 employees.
Local support group meetings will bring thyroid cancer survivors and caregivers together in person in September, as well as every month, around the United States and in Costa Rica and Philippines.
Survivors and caregivers around the world are wearing and giving awareness wristbands and pins and giving awareness brochures and flyers to their friends and relatives.

For information and free materials about thyroid cancer, ThyCa’s free support services, and the conference, e-mail to thyca@thyca.org, call toll free 1-877-588-7904, fax to 1-630-604-6078, write to PO Box 1545, New York, NY 10159-1545, or visit www.thyca.org.

On Saturday, September 15, 2007, from 10:30 a.m. to noon, Leonard Wartofsky, M.D., past president of The Endocrine Society and the American Thyroid Association, and Chair of the Department of Medicine at the Washington Hospital Center in Washington, D.C., will speak and answer questions about thyroid cancer.

The program will take place at the September monthly meeting of the ThyCa Washington, D.C. Thyroid Cancer Support Group.

The free program will be held at the Private Dining Room #2 of Holy Cross Hospital, 1500 Forest Glen Road, Silver Spring, Maryland. The hospital is located near Route I-495 (Beltway) and Georgia Avenue and is also a short walk from bus and subway transportation.

The meeting is open to people at all phases of testing, treatment, and follow-up for thyroid cancer, as well as their families and friends.

The sponsor is ThyCa: Thyroid Cancer Survivors’ Association, Inc. For more information, contact Gary Bloom, Facilitator of the ThyCa Washington, D.C., thyroid cancer support group, by e-mail atWashington_DC@thyca.org.

Leonard Wartofsky, M.D., M.P.H., M.A.C.P., is Professor of Medicine at the Uniformed Services University of the Health Sciences in Bethesda, Maryland, and Georgetown University in Washington, D,C., and Clinical Professor of Medicine at the University of Maryland, Howard University, and George Washington University Schools of Medicine. He chairs the Department of Medicine at the Washington Hospital Center.

Dr. Wartofsky was the 2001 recipient of the Distinguished Educator Award of The Endocrine Society. His specialty is endocrinology, and he is known worldwide as an authority on thyroid disorders and thyroid cancer. He has published over 300 articles or book chapters in the medical literature.

He is the editor of the medical text titled “Thyroid Cancer: A Comprehensive Guide to Clinical Management” and is co-editor of the patient and caregiver reference book titled “Thyroid Cancer: A Guide for Patients.”

Free services and resources for thyroid cancer survivors are organized by ThyCa: Thyroid Cancer Survivors’ Association, Inc. ThyCa is a national nonprofit, volunteer organization providing person-to-person support, local support groups, e-mail support groups, a free downloadable low-iodine cookbook, a free online newsletter, thyroid cancer awareness materials, and other educational services and resources to thyroid cancer survivors, their families, and the public at no charge.

ThyCa also funds thyroid cancer research grants, sponsors Thyroid Cancer Awareness Month in September. and will hold its 10th annual international conference in San Francisco, California, on October 19-21,
2007.

For more information, visit the ThyCa web site, write to PO Box 1545, New York, NY 10159-1545, call 877-588-7904, fax to 630-604-6078, or e-mail to thyca@thyca.org.

On Saturday, September 8, 2007, the University of Pittsburgh Medical Center and ThyCa: Thyroid Cancer Survivors’ Association are sponsoring a Thyroid Cancer Seminar from 8:30 a.m. to 4 p.m. PLEASE NOTE: NEW LOCATION: The William Pitt Student Union Ballroom (on University of Pittsburgh campus), 3959 Fifth Ave, Pittsburgh PA 15260.

This program is free and open to everyone interested in learning about thyroid cancer, including people at all phases of testing, treatment, and followup, as well as their family members and friends.

Several physicians, plus a dentist and a psychologist from the University of Pittsburgh Medical Center, Cancer Institute, and School of Dental Medicine will speak and answer questions about thyroid cancer diagnosis, surgery, radioactive iodine treatment, oral and dental complications and care, thyroid hormone replacement, follow-up testing and long-term management of thyroid cancer, and coping skills for well-being.

Speakers include Shane O. LeBeau, M.D., Endocrinologist; Robert L. Ferris, M.D., Ph.D., Surgeon; James M. Mountz, M.D., Ph.D., Nuclear Medicine Specialist; James Guggenheimer, D.D.S., Professor of Oral Medicine; Haruko A. Kuffner, M.D., M.S., Director, Multidisciplinary Thyroid Cancer Program; additional physician specialists; and Paul Friday, Ph.D., Clinical Psychologist.

Attendees may register on site and may come for part or all of the day. Lunch will be provided. The event was organized by the ThyCa Pittsburgh-UPMC Thyroid Cancer Support Group. For more information, e-mail to pittsburghupmc-PA@thyca.org or phone Cindy Valko at 412-586-9714 or Ralph Zottola at 412-977-1571.

ThyCa: Thyroid Cancer Survivors’ Association, Inc., is a national nonprofit 501(c)(3) organization of thyroid cancer survivors, families, and health care professionals, advised by thyroid cancer specialists. For free brochures and more information about ThyCa’s free year-round support services, awareness materials and other publications, and special events, e-mail to thyca@thyca.org, call toll-free 1-877-588-7904, write to PO Box 1545, New York, NY 10159-1545, or visit www.thyca.org.

IN THIS ISSUE

September is Thyroid Cancer Awareness Month
ThyCa Conference Changed a Life — It Could Change Yours, Too
Latest 2007 Conference News
ThyCa Executive Director Selected
New: The 6th Edition of the Free Downloadable Low-Iodine Cookbook
Newest Spanish Translation: Free Downloadable Low-Iodine Cookbook
Medullary Thyroid Cancer Web Site Preview
Clinical Trial Open at NCI for Children with Medullary Thyroid Cancer
Listen to the New Radio PSAs
Come to the 2007 Dinner/Auction Research Fundraiser
Have You Visited the Web Site Lately?
Are You a ThyCa Member?
Thank You From ThyCa
Every Day…
About ThyCa News Notes

September is Thyroid Cancer Awareness Month
Help raise awareness!

ThyCa: Thyroid Cancer Survivors’ Association, Inc. sponsors Thyroid Cancer Awareness Month. September highlights the year-round activities of ThyCa volunteers to:

Increase thyroid cancer education.
Raise awareness of the importance of early detection, treatment, and lifelong monitoring.
Inform the public about ThyCa’s free information, resources, and support.
Raise awareness of the need for more thyroid cancer research.

Thyroid Cancer Awareness

Download free flyers
Listen to the radio public service announcement from John Breen of West Virginia
Read about what volunteers are doing to raise awareness.

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ThyCa Conference Changed a Life — It Could Change Yours, Too

Cindy Hellinger’s surgery and thyroid cancer treatment was more difficult than she ever imagined. It left her feeling ill, confused, and unsure of herself. But attending the ThyCa conference changed all that. Now she tells any thyroid cancer patient or caregiver who will listen about ThyCa and, especially, the ThyCa Conference.
“Attending the International Thyroid Cancer Survivors’ Conference changed my life,” Cindy begins.

“After a thyroidectomy with modified neck dissection and then radioactive iodine treatment for papillary thyroid cancer, my Thyroglobulin test indicated that I had residual thyroid cancer. When various diagnostic testing revealed no metastases, the specialists were left scratching their heads. They recommended surgery and another RAI treatment with ‘hopes’ of helping.”

Disheartened, confused, and a bit skeptical, she attended the conference. “I was blown away by all the information that related directly to my case. At one point, I began to cry, because, for the first time since my diagnosis, I felt courageous and confident about what I needed to do.”

She felt the medical professionals at the conference were true experts and was inspired by their dedication and kindness. “As a result of attending the conference, I received specific information I could apply to my case. I believe it may have saved my life!”

In addition to the information, which was pivotal to advocating for her own care, she enjoyed meeting fellow thycans and hearing their stories. “I believe that as a result of the conference, the learning and meeting new friends have made me appreciate that, even though I do not like having cancer, I would never have met these wonderfully committed and inspirational individuals otherwise! “

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Latest 2007 Conference News

Come to the

10th International Thyroid Cancer Survivors’ Conference
October 19-21, 2007
Sofitel San Francisco Bay Hotel
Redwood City, California

We’re honored that more 25 distinguished physicians plus more than 30 other specialists, survivors of every type of thyroid cancer, and caregivers, are confirmed as speakers. The physicians come from the:

Cleveland Clinic
Mayo Clinic
New York University Cancer Institute
Ohio State University Medical School
Stanford Medical Center
University of California at Los Angeles
University of California at San Francisco
University of Colorado Health Sciences Center
University of Florida at Gainesville
University of Southern California
University of Texas M.D. Anderson Cancer Center
and other leading institutions.

Our speakers also include a specialist in Thyroglobulin measurement; a pharmacist; mental health professionals; attorneys; other specialists; long-term survivors of papillary, follicular, medullary, and anaplastic thyroid cancer; and caregivers. There will be more than 100 sessions on the latest advances in thyroid cancer care and research, clinical trials, insurance and employment issues, and coping skills for well-being.

The hotel has free parking. It also provides free shuttle service from San Francisco International Airport. In addition, the hotel’s special conference room rate is guaranteed for reservations made through October 1, 2007, by 5 p.m., and after that on a space-available basis. Our web site has more details about registration for the conference and the hotel, as well as driving directions.

We’re excited to report that by mid-August, people have registered from 20 states, Canada, and Brazil. You may register online or by mail in advance, or on site at the conference. The early-bird deadline is September 19. Scholarships to cover the registration fee are available on request.

We hope to see you at the conference!

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ThyCa Executive Director Selected

ThyCa: Thyroid Cancer Survivors’ Association is pleased to announce the selection of Gary Bloom of Olney, Maryland, as Executive Director, effective September 10, 2007. ThyCa’s Board of Directors created this new position to support ThyCa’s tremendous growth in constituents and support services, outreach, and research advocacy over the past 12 years. Gary was selected by ThyCa’s Search Committee, led by Sara Brenner, Board Member and Director of Local ThyCa Support Groups, through an open nationwide search process and thorough review of candidates.

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New—The 6th Edition of the Free Downloadable Low-Iodine Cookbook

We’re excited to tell you that the expanded 6th edition is now on our web site!

The latest edition has more than 250 delicious family-favorite recipes, plus many tips. More than 100 generous thyroid cancer survivors and caregivers contributed these tasty recipes, together with dozens of tips and suggestions for making the short-term low-iodine diet easier for everyone. Our special thanks to all of you.

The 6th edition includes all the recipes from the 5th edition, plus lots of great new recipes.

You’re welcome to print it out and share it with others.

Visit our web site for the new edition!

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Newest Spanish Translation—Free Downloadable Low-Iodine Cookbook

Libro de cocina—Dieta con bajo contenido en yodo

We’re proud to announce our newest free publication in Spanish—The Low-Iodine Cookbook. More than 185 of the delicious recipes from ThyCa’s free Low-Iodine Cookbook are now available in Spanish on our web site. Visit the web site today, to download this wonderful resource.

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Medullary Thyroid Cancer Web Site Preview

Our web site will soon add more sections on Medullary Thyroid Cancer. The Medullary Thyroid Cancer site is being developed with the leadership of Mary Seemuller and Jan Halzel, Pharm.D., of our Medullary Thyroid Cancer E-Mail Support Group. Many volunteers are participating. Physicians with expertise in medullary thyroid cancer will review and give input on all the medical pages.

This special site on a rare type of thyroid cancer will join the Anaplastic Thyroid Cancer Site, launched in 2005, and the Pediatric Thyroid Cancer Site, launched in 2006. Developed with input from numerous physician specialists, these sites are valuable resources for families and professionals seeking the latest information and support resources on rare types of thyroid cancer.

For information about medullary thyroid cancer, visit the Newly Diagnosed section of our web site.

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Clinical Trial Open at NCI for Children with Medullary Thyroid Cancer

A new clinical trial of Zactima (zd6474) as a treatment for children with hereditary Medullary Thyroid Cancer (MTC) is enrolling patients starting in summer 2007.

The clinical trial is being conducted as a collaborative effort between Samuel A. Wells, M.D. of Duke University Medical Center and the Pediatric Oncology Branch of the National Cancer Institute (NCI) at the National Institutes of Health (NIH) in Bethesda, Maryland, which is just outside Washington, DC.

This trial is intended for children with advanced local or metastatic MTC who have been advised by their doctor that they need further treatment.

Enrollment will be open to children who live in the U.S. or Canada. All patients will be admitted to the NCI Clinical Center.

For more information and contact details about the study, visit this page.

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Listen to the New Radio PSAs

Three new radio public service announcements are now on the web site. Our thanks to John Breen of WDTV NewsChannel 5, Clarksburg, West Virginia, for developing these announcements. You’ll find them in theAwareness and Conference sections of the web site.

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Come to the 2007 Dinner/Auction Research Fundraiser

A wonderful evening of camaraderie, inspiration, and hope

Saturday Evening, October 20th, 2007
6 p.m. to 9 p.m.
At the Sofitel San Francisco Bay Hotel
The conference hotel

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Have You Visited the Web Site Lately?

Our web site has more than 600 pages. More than 50 distinguished physicians plus numerous other specialists give ongoing input and review. We greatly appreciate the wonderful support of these medical specialists.

The web site expands nearly every week. Visit us often for the latest information updates and news about special events.

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Are You a ThyCa Member?

We invite you to join ThyCa. Your membership will support ThyCa’s efforts to reach other survivors and their families around the world.

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Thank You From ThyCa!

We believe that no one should have to be alone when facing thyroid cancer.

Our free support services are offered with this as our main goal.

We thank everyone for giving your time and talents to making possible our free services, publications, and events. We’re grateful to you for reaching out to others worldwide, to help connect them with ThyCa’s support services and resources.

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Every Day…

Every day, thousands of people with thyroid cancer, and their families, are offered support, education, and hope by ThyCa: Thyroid Cancer Survivors’ Association. Your generous support is what makes this possible. 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), so click here to give.

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ThyCa NEWS NOTES
Copyright (c) 2007 ThyCa: Thyroid Cancer Survivors’ Association, Inc.

We encourage you to send these News Notes to your family and friends. For permission to reprint in another electronic or print publication, please contact us.

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 public awareness for early detection, lifetime health monitoring, and thyroid cancer research fundraising and research grants.

E-mail thyca@thyca.org, call 1-877-588-7904, fax to 1-630-604-6078, write to PO Box 1545, New York, NY 10159-1545, or visit www.thyca.org.

USA TODAY has asked ThyCa: Thyroid Cancer Survivors’ Association to issue the following survey. The newspaper is researching a story on treatment and insurance issues arising from radioactive iodine therapy and would appreciate your answers to the survey questions.

We believe that your responses to the survey will be tremendously informative, not only to USA TODAY readers, but also to our constituents. We’re hoping to release the results in full during our conference in San Francisco in October, and later on our web site.

To safeguard individuals’ confidentiality, ThyCa will not supply the newspaper with any identifying information about any individuals. But USA TODAY medical writer Steve Sternberg would like very much to speak with any participant who wants to speak with him. Hence, the last question on the survey allows you to register your interest.

Please respond by August 21, 2007. Thank you.

By Joel Amromin, ThyCa Los Angeles Support Group Co-Facilitator and Board Member, ThyCa: Thyroid Cancer Survivors’ Association

For the last few years, I have represented ThyCa: Thyroid Cancer Survivors’ Association at a number of forums, ranging from local health fairs to the nternational Conference of the American Thyroid Association.

At those functions, I worked in our booth, distributing ThyCa literature, answering questions from physicians and patients, and fielding requests for more information. So I was ready to answer the call when asked if I would represent ThyCa in the Scientist-Survivor Program (SSP) at the Annual Meeting of the American Association for Cancer Research (AACR), which was being held in Los Angeles in April 2007.

Several weeks later, I began receiving requests for a bio, a photograph, answers to a detailed questionnaire, etc. I also received an extensive prerequisite reading list that included one book (Genome by Matt Ridley) and several journal articles.

I learned that I was not just working a booth, but that I was going to be a delegate to the AACR Scientist-Survivor Program® (SSP) at the AACR Annual Meeting. My first reaction was, “What have I gotten myself into?!” My second reaction, after looking at the AACR web site was, “This looks fascinating!” So I harnessed some volunteers to staff our exhibit booth at the AACR meeting and got ready for the five days of Scientist/Survivor Program meetings.

AACR and SSP Background

The AACR Annual Meeting is an opportunity for clinical and laboratory cancer researchers to get together and present papers on their work. The papers range from initial theoretical presentations to detailed results of clinical trials. There were about 6,000 such papers presented in the five days. There were also thousands of posters describing the work of various researchers.

The Annual Meeting is an opportunity for the researchers to exchange ideas and data in the rapidly changing field of cancer detections, prevention, and treatment. The meeting also celebrated the 100th anniversary of the AACR. (In 2009, they will celebrate the 100th AACR Annual Meeting.)

The SSP, now in its ninth year, is held concurrently with the AACR Annual Meeting. The approximately 40 SSP attendees represented patient advocates, survivors, and support groups from wide ranges of cancer types, group types (support, advocacy, etc.), and locations, including representatives from Uganda, Israel, and South Africa.

Active participation in the program provided a wealth of opportunities:

Learning about the latest cancer research advances by attending both AACR technical presentations and special presentations to the SSP attendees.
Learning from each other through informal discussions and moderated forums. A special SSP dining room and headquarters guaranteed that we would have ample opportunity to talk.
Learning about and contributing opinions to government meetings on medical privacy issues.
Obtaining access to the extensive AACR online library of cancer research publications for our respective organizations.

For the remainder of this article, I’ll highlight just some of things at the meeting that were especially significant to me. I’ll also touch on one disappointment.

A Better Understanding of What This Thing Called “Cancer” Is

We thyroid cancer patients are generally pretty good at learning about our disease, getting the right diagnostics and treatments, and managing our relatively simple (for most of us) follow-on testing.

But do we really understand what cancer is? Our cancer seems so different from many others. So what makes it cancer, just like the others?

One of the articles we read in preparation for the conference (“The Hallmarks of Cancer,” Hanshan and Weinberg, Cell, volume 100, 57-70, Jan. 7, 2000) described six traits exhibited by all cancers:

evading programmed cell death (apoptosis)
ability to generate their own growth signals
insensitivity to anti-growth signals
sustained development of abnormal vasculature (angiogenesis)
ability to replicate without limit
tissue invasion and metastasis

That’s a pretty straightforward list. Keeping such a list in mind as we study thyroid cancer and go to our own conferences can help organize the wealth of information we absorb. It can also help us see how information regarding other cancers can apply to our own cancer.

An Analysis of Advocacy and Survivorship

In an excellent presentation to the SSP attendees, Jane Perlmutter, an independent cancer advocate, described five types of cancer advocacy:

Fundraising
Support
Political
Research
Outreach and Education

ThyCa is involved in all five of these areas to greater or lesser degrees. Ms. Permutter’s presentation presented a good framework and some good resources that I will be presenting to the ThyCa Board.

CR Magazine

CR is an extremely well-researched, written, edited, and illustrated quarterly journal published by the AACR for “the rest of us.” The magazine, now just over a year old is “about people and progress in cancer.” The CR mission statement says, in part, that “CR will provide a forum for sharing essential, evidence-based information and perspectives on cancer research, advocacy and survivorship.”

The magazine includes technical articles written (and beautifully illustrated) for non-technical people, information about volunteering, stories of well-known (e.g., Frank Zappa) and unknown cancer survivors, cancer and minorities, care giving, and many other topics.

While thyroid cancer, because of its rarity, may not make the magazine headlines soon (but it might), the information in the magazine is very relevant to us. All cancer survivors should have a chance to examine this journal and, if desired, subscribe. I will be subscribing and will show the magazine to our local membership. I would like to see stacks of these at our next ThyCa International Conference. For more information about CR, visit http://www.crmagazine.org.

Incredible Networking

The representatives to the SSP ranged from small local support groups to large international cancer research funding groups. Between those extremes were groups that advocate for specific demographic groups, specific cancers, and specific geographic areas. They operated on shoestrings and huge institutional budgets.

We each had the opportunity to present our organization to the group. We also had plenty of opportunity to socialize. In the process, discussions were started and relationships were built. I personally learned some things about management of the organization that I could bring back to my discussions as a member of the ThyCa Board of Directors. I learned about new opportunities for communicating with rural areas, which I also passed on to others.

Excellent Technical Sessions

In addition to the highly technical sessions held for the researchers, we had a number of sessions where the top researchers came to us. They brought news of some of the latest research and other information. They presented it in terms we could all understand.

All the presentations were exciting and enlightening, but the real eye-popper for me was a presentation by Jean-Pierre Issa, MD from the M.D. Anderson Cancer Center in Houston. He talked about epigenetics, which studies the portions of the DNA that aren’t genes. It also studies structures within the cell that enable DNA to direct protein synthesis.

It turns out that various problems in these epigenetic structures may be a key to the development of cancer and, therefore, can be exploited to help fight cancer. In fact, many cancers may have half a dozen gene mutations, but dozens of epigenetic mutations.

Dr. Issa said we have mapped the human genome; now the buzzword is mapping of the human epigenome. I’ve recommended to our Chair that this topic and, possibly, Dr. Issa be included in our next International Conference.

A Disappointment… Somewhat

The AACR conference included over 6,000 papers and, to my rough estimate, about 12,000 poster presentations. Of those, I found only one poster and no presentations that dealt with thyroid cancer, even in the poster sections on endocrinology and head and neck cancer. I skimmed most of the presentation lists, and might have missed one, but there was definitely a shortage of interest in thyroid cancer, despite its increasing frequency. That’s not to say that much of the work about other cancers couldn’t also apply to thyroid cancer.

However, based upon my observations, I think that we as a thyroid cancer advocacy organization should try to raise the visibility of thyroid cancer research at the AACR level. We aren’t doing the research and can’t present the papers, but we can talk to those who are about submitting more papers to the AACR.

Because of the excellent relationships we have built with the thyroid cancer research community, we should be in a good position to undertake this effort. In the long run, it brings thyroid cancer research into close contact with other cancer research, which hopefully would benefit both. It also brings more visibility to thyroid cancer research, which might make it easier for researchers to raise funds.

What Next?

The 2007 AACR Scientist«Survivor Program will stay with me for a long time. I would like to see ThyCa participating in next year’s program, which will be in San Diego, California.

I believe, especially after attending this meeting, that we can learn exciting things from areas outside thyroid cancer research that may someday also help the fight against thyroid cancer.

That’s one of the things that excited me about Dr. Issa’s presentation on epigenetics. New epigenetic treatments are targeting circulating tumors such as leukemia. But work has already started on applying the concepts to solid tumors. Learning about such topics is inspiring and presents a new vision of the future.

Finally, I’ve started bringing CR magazines to our local support group meetings. If I had to highlight one thing that can bring the world of cancer patients and cancer research together outside the context of the AACR SSP meeting, itself, it would have to be the magazine.

If the cutting-edge technical information presented in non-technical terms stimulates just one layman to have some out-of-right-field idea that might lead to progress, all the effort poured into the magazine will have paid off.

If just one volunteer learns how to raise money for research, provide direct patient support, or do something else to accelerate the fight against cancer or improve the well-being of cancer survivors, all the effort poured into the magazine will have paid off.

If just one survivor sees a ray of hope that enables her to live a meaningful and productive life despite cancer, all the effort poured into the magazine will have paid off.