ThyCa: Thyroid Cancer Survivors’ Association Accepted into the Combined Federal Campaign

ThyCa’s CFC # is 11675

Funds Raised Will Provide Education, Support, Resources and Research To Benefit Those with the Most Common Endocrine Cancer

ThyCa: Thyroid Cancer Survivor’s Association has been accepted into the world’s largest workplace giving campaign.

Federal civilian, postal, and military employees are able to choose ThyCa as a recipient of their workplace donations through the Combined Federal Campaign (CFC). This federal employees’ charitable giving campaign raises millions of dollars each year for thousands of nonprofits providing health and human services throughout the world.

“Joining the ranks of the Combined Federal Campaign helps ThyCa provide needed services and research funding to support those who are touched by this life-altering cancer,” said Gary Bloom, Executive Director. “Thyroid cancer is one of the few cancers that is increasing in incidence. It’s extremely important to strengthen and expand support services for those affected by it, as well as to increase research to find cures for all thyroid cancer.”

ThyCa; Thyroid Cancer Survivors’ Association, Inc., is a national nonprofit 501 (c)(3) service organization of thyroid cancer survivors, families, and health care professionals advised by nationally recognized experts on thyroid cancer and dedicated to education, communication, support, awareness for early detection, and thyroid cancer research fundraising and research grants.

Free year-round support services and resources include ThyCa’s award-winning educational web site, a Person To Person Network, local support groups coast to coast, regional one-day workshops, nine e-mail support groups, a toll-free survivors’ telephone number, an online newsletter, and the expanded 6th edition of the free downloadable Low-Iodine Cookbook. Free ThyCa materials, including the Cookbook, are also available in Spanish.

ThyCa began awarding grants to fund thyroid cancer research in 2003, and has awarded grants each year since then.

In addition, ThyCa’s annual international conference brings together hundreds of thyroid cancer survivors, families, and experts in thyroid cancer treatment and research.

Information about thyroid cancer, ThyCa’s free support services and publications, awareness outreach materials, and the annual workshops and conference is available by writing to PO Box 1545, New York, NY 10159-1545, e- mailing to thyca@thyca.org, calling toll free 1-877-588-7904, or visiting our website..

Round 2: Progress, Youth, and Hope

By Joel Amromin, ThyCa Los Angeles Support Group Co-Facilitator and Board Member for ThyCa: Thyroid Cancer Survivors’ Association
June 2008

This year was my second year representing ThyCa as a participant in the American Association for Cancer Research Scientist-Survivor Program (SSP). The SSP was held in connection with the 2008 AACR Annual Meeting. I saw many of the same people, the meeting had the same format, and I got the same pampering and tired feet.

But this year there was a difference. Last year I heard many speakers and learned a lot about cancer and cancer research. I got a snapshot and a few highlights of what was happening at that time. However, the SSP is a three-year program.

This time, because I was at last year’s meeting, I could sense the pace of progress in cancer research that was not obvious last year. Much of this progress has resulted from the mapping of the human genome and the associated understanding of chain reactions in normal and cancerous cells.

I also took a closer look at the demographics of research presenters. I came away with hope.

Progress

Last year, Dr. Jean-Pierre Issa from the M.D. Anderson Cancer Center talked to us about epigenetics, which, in simplified terms, is the study of those parts of the DNA and associated cell mechanisms that are not genes. These play critical roles in the cell’s ability to translate the genes into instructions for building the right proteins at the right time.

Dr. Issa said that therapies based on epigenetics were still primarily applicable only to liquid tumors, but that Steven Sherman, M.D., also of M.D. Anderson, was starting to look into epigenetics in solid tumors. (Editor’s note: Dr. Sherman is a thyroid cancer specialist and is a ThyCa medical advisor.)

This year, Dr. Sherman spoke about New Directions and Targeted Therapies in a session on thyroid cancer. He described using Decitabine in Phase 1I clinical trials to see if it can restore radioactive iodine uptake in patients with metastatic papillary or follicular thyroid cancer that is unresponsive to radioactive iodine I 131.

Regardless of the trial outcomes, seeing this presentation highlighted the exciting progress being made as cutting-edge epigenetic research moves into the clinical arena, even if only in early trials.

Another area that showed significant progress from last year was the field of individualized therapy. Medicine has always looked for treatments that provide the most benefit to the most people. That made a lot of sense. If you’ve got a dollar, put it where you get the most results. That made sense for antibiotics, digestive disorders, analgesics, etc.

But broad-spectrum research hasn’t worked as well for many cancers and other rare conditions. A tumor isn’t a simple externally induced inflammation or infection. A tumor is a change in the base mechanisms of a single person’s cells.

These changes can be caused by many factors, but most of then are genetic or epigenetic changes and that allow cells to multiply uncontrollably. Not only is each type of tumor different from others; the cellular pathways and mutations can vary from person to person, even though they have the same type of cancer.

Traditionally, cancer has been treated by a broad spectrum of chemicals, along with radiation treatments and often surgery. Usually, the chemicals are combined in groups of two or three because we don’t know which one, if any, will work for a given patient.

At this year’s conference, there was a big emphasis on developing ways of treating patients with procedures that specifically target that patient’s tumors and only the tumors, thereby minimizing side effects. This has been made possible by DNA vaccination, which Dr. Ron Levy described to the SSP participants.

What is a vaccine? A vaccine is a preparation that improves immunity to a particular disease. Early vaccines were simply living or dead disease organisms, or key parts of those organisms, that triggered a response by the body’s immune system. When the real disease came around, that immune response was ready to attack it.

DNA vaccines are small bits of the patient’s own DNA that have been modified to attack that tumor or aid in its treatment. They are grown in the lab and injected back into the metastatic tumor. The cells incorporate themselves back into the patient’s DNA and replicate.

Once in the body, they proliferate, triggering the body’s own immune system to fight the tumor. Furthermore, they actually spread antigens throughout the body, enabling the body to fight the cancer at remote locations. This produces a lasting immunological response to the tumor.

DNA vaccines work only because we are able to identify specific genes, modify them, and reinsert them into the patient. The beauty is that the treatment is specific to that patient because it is made from that patient’s own DNA. The changes that produce the immunity are tested in the lab, instead of in the patient, with samples of that patient’s tumor.

The point here is that DNA vaccination doesn’t depend on the development of a broad-spectrum chemotherapy that can be used with many patients. Rather, it is the development of a general-purpose technology that allows specific treatment for each patient.

This is a radical paradigm shift that ultimately not only can reduce suffering, but also has the potential to reduce the cost of treatment and bring treatment to those for whom no broad-spectrum treatment is available.

Youth

Last year, as I wandered around the poster sessions, I concentrated on looking for specific topics that might relate to thyroid cancer. I found only one.

This year there were a few more. There was even an excellent session devoted to thyroid cancer.

But I also spent time looking at who was presenting the posters. These were almost universally young people (young from the standpoint of my seventh decade). I’d say the vast majority were graduate students. Their enthusiasm was palpable. Granted, there were many times when I saw people sitting in front of their posters with no visitors. But I also saw a lot of posters that generated animated discussions. People were truly excited about what they were seeing and were exchanging ideas about it, stimulating possible further research.

Many of these posters were studies dealing with just a tiny piece of a puzzle. No doubt, in most cases they were part of a larger project being run by a supervising professor or team leader.

But these young people are the future of cancer research. In a few years, they will be making the next major breakthroughs. They will be become the leaders and they will be making the major announcements and presentations at the AACR meeting and other conferences.

Which leads me to…

Hope

I don’t know if we will ever completely eliminate cancer. It’s a disease of mutation, which is random.

But as I sat through sessions and looked at posters, I saw significant progress. That progress is accelerating because of the new tools that have been created from our greater understanding of the human genome.

This is exciting medicine that I believe has the potential within our lifetimes to reduce cancer to a treatable condition.

For many people, cancer will be prevented or, if contracted, turned into a chronic, manageable disease.

Simple bacteria and viruses used to kill and maim thousands of people at a time. But today we understand them and have ways of preventing and treating them.

I don’t believe we will eliminate cancer, either. But we are getting tantalizingly close to real preventions and treatments.

I don’t believe most people see this progress. The only face of cancer that they see is family and friends suffering, dying, and occasionally beating cancer. They see the misleading headlines about cancer research and wonder why “we don’t get anywhere.”

They don’t have the opportunity to come to a conference such as AACR to see the “miracles” that the future holds.

I have seen them and the army of people making them, and that gives me hope.

The first thyroid cancer support group in Indiana will hold its first monthly meeting in Indianapolis on Wednesday, March 26, 2008, from 6:30 p.m. to 8 p.m., at The Wellness Community, 5150 West 71st Street, Indianapolis, Indiana, announced Sara Brenner, Director of Support Group Development for ThyCa: Thyroid Cancer Survivors’ Association, Inc.

The ThyCa Indianapolis Thyroid Cancer Support Group will meet on the fourth Wednesday evening each month from 6:30 p.m. to 8 p.m. Meetings are free and open to people at all phases of testing, treatment, and follow-up for thyroid cancer, as well as their family members and friends.

Michelle Irwin is the volunteer facilitator of the new support group. For more information, e-mail her at Indianapolis-IN@thyca.org or call 317-517-3997 or visit the group’s web page.

Free thyroid cancer support groups are available coast to coast in the United States, and in Costa Rica and Philippines.

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 internationally recognized thyroid cancer specialists.

For more information about ThyCa’s free year-round support services, education, 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 USA, or visit the ThyCa web site.

Nearly 500 thyroid cancer survivors, family members, friends, and health care professionals took part in the 10th International Thyroid Cancer Survivors’ Conference held in San Francisco, October 19 through 21, 2007. The conference was sponsored by ThyCa: Thyroid Cancer Survivors’ Association, Inc. <www.thyca.org>.

“We are thrilled that so many thyroid cancer survivors and their families attended,” said ThyCa Executive Director Gary Bloom, a 12-year thyroid cancer survivor.

Attendees came from 37 states, the District of Columbia, Canada, and Brazil. Participants ranged from people being tested for possible thyroid cancer to long-term survivors of every type of thyroid cancer—papillary, follicular, medullary, anaplastic, and variants.

Highlights of the conference’s 100-plus sessions included more than 40 physician presentations and Ask-a-Doctor sessions covering treatment, initial and long-term follow-up, and recent advances in targeted therapies and clinical trials testing new treatments.

Physician specialists came from leading cancer and medical centers around the country, incuding the Cleveland Clinic Foundation, Mayo Clinic, major medical centers in California, University of Texas M.D. Anderson Cancer Center, and several other major centers. “We are grateful to the dedicated thyroid cancer specialist physicians who so generously gave of their time in support of patient education, said Bloom. “Thyroid cancer requires lifelong management, and this conference is designed to help patients manage their care and quality of life over the long term.”

More than 30 additional speakers included dentists, a pharmacist, a nurse, mental health professionals, specialists in complementary approaches to well-being, survivors of each type of thyroid cancer, and caregivers.

“Attending the conference was the most important thing I’ve done since my diagnosis,” wrote one thyroid cancer survivor.

“Thyroid cancer is one of the few cancers where the incidence rate is increasing” explained Bloom. “In fact, among all cancers, it’s had the fastest growth in incidence among women. If detected early, it’s usually treatable. However, in some patients it can be aggressive and difficult to treat. It’s crucial that we provide patient education and support, as well as information about the latest advances in treatment, testing, and clinical trials.”

The 11th International Thyroid Cancer Survivors’ Conference will be held in St. Louis, Missouri, October 17-19, 2008.

ThyCa: Thyroid Cancer Survivors’ Association, Inc. is an international nonprofit 501(c)(3) organization of thyroid cancer survivors, family members, and health professionals, dedicated to education, communication, support, awareness for early detection, and thyroid cancer research fundraising and research grants. For more information about thyroid cancer and ThyCa’s free year-round support services, education, and publications, 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 the ThyCa web site.

Top thyroid cancer experts will present the latest research and advances in treatment at the 10th International Thyroid Cancer Survivors’ Conference, October 19 – 21, 2007 in San Francisco, California.

More than 80 sessions, including presentations on the latest medical research, insurance and employment issues, coping with the disease, and sharing with others living with thyroid cancer, will be held at the Sofitel San Francisco Bay Hotel in Redwood City.

Sponsor is the nonprofit ThyCa: Thyroid Cancer Survivors’ Association, Inc.

Ernest L. Mazzaferri, M.D., thyroid cancer specialist who is past President of the American Thyroid Association (ATA) and member of the ATA’s Guidelines Task Force that developed ATA’s 2006 official clinical guidelines (2006) will be one of more than 25 physician speakers.

Speakers will also include attorneys as well as specialists in coping skills and well-being. In addition, support group roundtables will give opportunities survivors and caregivers to share their experiences and hear from others coping with thyroid cancer.

Anyone whose life has been touched by thyroid cancer is encouraged to attend. Early registration, through September 19, 2007, is $45 (less for ThyCa members). Scholarships are available on request. The hotel is offering special rates for conference attendees, for single, double, triple, or quad rooms.

For more information, e-mail thyca@thyca.org or conference@thyca.org, call 1-877-588-7904, or go to www.thyca.org.

Costa Rica’s first thyroid cancer support group will meet on the fourth Tuesday of each month from 7 p.m. to 9 p.m. at “La Máscara” Theatre 13th Street, between 2nd and 4th Avenues, San José, Costa Rica. (Teatro La Mascara Calle 13, Avenida 2 y 4, diagonal al Hotel Flor de Lyz)

Meetings are free and open to people at all phases of testing, treatment, and follow-up for thyroid cancer, as well as their family members and friends. The ASOCATI ThyCa Costa Rica Support Group is affiliated with the nonprofit organization ThyCa: Thyroid Cancer Survivors’ Association, Inc. ASOCATI ThyCa Costa Rica supports comprehension and awareness of thyroid cancer.

The Costa Rica group is the second such group outside the United States; the first such group was formed in the Philippines in March 2006. The group, along with more than 60 other ThyCa support groups, has its own page in the ThyCa web site’s local support groups section.

Teresa Saprissa, facilitator of the ASOCATI ThyCa Costa Rica Support Group, invites thyroid cancer patients, families, and friends to attend meetings. To find out more about the new group, contact Teresa Saprissa by phone at 385-0755 (from US 011-506-385-0755) or e-mail to costarica@thyca.org.

“We are pleased that Costa Rica now has this important new resource,” said ThyCa’s Support Groups Coordinator Sara Gorrell Brenner. “Our support groups help people meet and share experiences, to cope with the challenges of thyroid cancer.”

ThyCa: Thyroid Cancer Survivors’ Association, Inc., is a nonprofit 501(c)(3) organization of thyroid cancer survivors, families, and health care professionals, advised by internationally recognized thyroid cancer specialists.

For more information about ThyCa’s free year-round support services, education, and publications, e-mail tothyca@thyca.org, call toll-free 1-877-588-7904, write to PO Box 1545, New York, NY 10159-1545 USA, or visit the ThyCa web site.

Over 100 Sessions Will Cover the Latest Treatments and Research, Insurance, Employment Issues, Nutrition, Fitness, Coping Skills, and More. Attendees May Register On-Site or in Advance. Scholarships Are Available.

On October 27-29, 2006, thyroid cancer survivors, family members, and friends are invited to the 9th International Thyroid Cancer Survivors’ Conference at the Sheraton World, 10100 International Drive, Orlando, Florida. The sponsor is the national voluntary nonprofit organization ThyCa: Thyroid Cancer Survivors’ Association, Inc.

The 23 distinguished physicians who will speak include endocrinologists, surgeons, nuclear medicine physicians, and other specialists from the following major centers:

Cleveland Clinic Foundation, Ohio and Florida
Dana Farber Cancer Institute, Massachusetts
Mayo Clinic Jacksonville, Florida
Memorial Sloan-Kettering Cancer Center, New York
University of Florida Shands Cancer Center, Florida
University of Texas M.D. Anderson Cancer Center, Texas
and many more leading centers

Speakers also include specialists in the fields of pharmacy, mental health, nutrition, fitness, and coping and complementary approaches for well-being, as well as survivors of every type of thyroid cancer, and caregivers.

More than 100 sessions will cover all types of thyroid cancer, one of the few cancers that is increasing in overall incidence. This event is the first-ever conference for thyroid cancer survivors and their families and friends to be held in Florida.

“This educational and supportive conference offers a wonderful opportunity to learn in depth from thyroid cancer experts, and to share experiences in coping with this disease,” says Gary Bloom, ThyCa Board Chair and Conference Coordinator. “We invite everyone interested in thyroid cancer to attend.”

Registration opens at 8 a.m. each day. Walk-in attendees are welcome to register on site at the conference. Attendees may register in advance online or by mail through October 15, 2005. Scholarships are available on request, as noted on the registration form.

For details about the conference and the free year-round services, education, awareness materials, and other publications available from ThyCa: Thyroid Cancer Survivors’ Association, e-mail to thyca@thyca.org, call toll-free 1-877-588-7904, write to PO Box 1545, New York, NY 1015901545, or visit www.thyca.org.

Sessions Will Cover the Latest Research and Treatment Advances, Insurance and Employment Issues, Coping Skills for Well-Being, and Survivor and Caregiver Perspectives

Attendees May Register On-Site or in Advance. Scholarships Are Available.

The 9th International Thyroid Cancer Survivors’ Conference in Orlando, Florida, on October 27-29, 2006, offers a unique opportunity for thyroid cancer survivors, caregivers, and friends to learn in depth from numerous distinguished thyroid cancer specialist physicians from major thyroid cancer treatment and research centers. The conference will be held at the Sheraton World Hotel, 10100 International Drive, Orlando, Florida.

Sponsor is the national voluntary nonprofit organization ThyCa: Thyroid Cancer Survivors’ Association, Inc..

Speakers include distinguished physicians who are thyroid cancer specialists, as well as specialists in the fields of pharmacy, nursing, medical insurance, employment law, coping and complementary approaches for well-being, as well as survivors of every type of thyroid cancer, and caregivers.

This educational and supportive weekend is the first-ever conference for thyroid cancer survivors and their families and friends to be held in Florida or the Southeast.

More than 80 sessions will cover all types of thyroid cancer, one of the few cancers that is increasing in overall incidence and that has nearly doubled in new cases in the last decade.

There will be sessions on papillary, follicular, medullary, anaplastic, and variants, as well as pediatric thyroid cancer; all phases of testing, treatment, and long-term monitoring. Sessions are held in 6 different meeting rooms, to give attendees choices of Ask-a-Doctor sessions, coping skills workshops, and survivor/caregiver roundtables.

Last year’s program and speaker list are on ThyCa’s web site. This year’s timetable and range of topics will be similar, with added sessions on new topics. Details about the 2006 program and speakers will be added to the web site this summer and fall.

Online and mail registration is now available through the web site at www.thyca.org. An early-bird discount, as well as a discount for family members and guests, is included. To make the conference available to everyone, scholarships are available, as noted on the registration form.

For more information about the conference as well as the free year-round education, one-to-one and group support, awareness materials for early detection, and other publications about thyroid cancer, contact ThyCa: Thyroid Cancer Survivors’ Association, Inc. 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 1015901545, or visit the ThyCa web site.

Sessions Will Cover Research and Treatment Advances, Insurance, Fitness, Nutrition, and Coping Skills. Attendees May Register On-Site or in Advance. Scholarships Are Available.

On October 21-23, 2005, thyroid cancer survivors, family members, and friends are invited to the 8th International Thyroid Cancer Survivors’ Conference at the Sheraton Denver West Hotel, 360 Union Boulevard, Lakewood, Colorado.

The sponsor is the national voluntary nonprofit organization ThyCa: Thyroid Cancer Survivors’ Association, Inc.

The 22 distinguished physicians who will speak include endocrinologists, surgeons, medical oncologists, and other specialists from the following major centers:

Cleveland Clinic Foundation, Ohio
Duke University Medical Center, North Carolina
Johns Hopkins Medical Institutions, Maryland
University of Colorado Health Sciences Center
University of Florida Shands Cancer Center, Florida
University of Texas M.D. Anderson Cancer Center, Texas
University of Utah Medical School, Utah
Washington University School of Medicine, Missouri
and other leading centers

Speakers also include specialists in the fields of pharmacy, nursing, psychology, nutrition, fitness, coping and complementary approaches for well-being, as well as survivors of every type of thyroid cancer, and caregivers.

More than 80 sessions will cover all types of thyroid cancer, one of the few cancers that is increasing in overall incidence. This educational and supportive weekend is the first conference for thyroid cancer survivors and their families and friends to be held in the Rocky Mountain region.

“This educational and supportive conference offers a wonderful opportunity to learn in depth from leaders in thyroid cancer care and research, and to share experiences with other survivors and caregivers,” says Gary Bloom, ThyCa Board Chair and Conference Coordinator. “We invite everyone interested in thyroid cancer to attend.”

The hotel has free parking, and a Park’N’Ride Bus Station (Cold Spring) is located across the street from the hotel. In addition, the Sheraton Denver West Hotel has arranged a special room rate, available through October 14.

For more information about the conference and the free year-round support services, education, awareness materials, and other publications available from ThyCa: Thyroid Cancer Survivors’ Association, e-mail tothyca@thyca.org, call toll-free 1-877-588-7904, write to PO Box 1545, New York, NY 1015901545, or visit the ThyCa web site.

ThyCa: Thyroid Cancer Survivors’ Association is pleased to announce that its Central Pennsylvania ThyCa Support Group will begin holding monthly meetings in Harrisburg starting on February 6, 2005.

This free group will meet on the first Sunday of every month from 1 p.m. to 3 p.m., at the East Shore Area Library, 4501 Ethel Street, Harrisburg, Pennsylvania, behind Colonial Park Mall. The volunteer facilitator is Sylvia Empson and the co-facilitator is Georgy Stevens.

The ThyCa Central Pennsylvania Support Group is part of a national network of thyroid cancer support groups organized by ThyCa: Thyroid Cancer Survivors’ Association, Inc. ThyCa Central Pennsylvania is free and open to all thyroid cancer survivors, their families, friends, and caregivers. For more information about ThyCa Central Pennsylvania, please contact the support group facilitator, Sylvia Empson at 717-657-9793 or the co-facilitator, Georgy Stevens at 717-732-2285 or e-mail Central_PA@thyca.org.

ThyCa: Thyroid Cancer Survivors’ Association, Inc. is a national all-volunteer nonprofit 501(c)(3) organization. ThyCa provides thyroid cancer survivors and their families with free year-round services such as person-to-person and e-mail support groups, a free low-iodine cookbook, free newsletters, and other educational resources. ThyCa also sponsors free regional workshops and an annual international conference. ThyCa is dedicated to providing a supportive and educational community for thyroid cancer survivors, their families, and friends.

For more information about ThyCa’s free services and special events, please visit the ThyCa web site, call toll-free at 1-877-588-7904, write PO Box 1545, New York, NY 10159-1545, or e-mail to thyca@thyca.org.