ThyCa Supports Rare Disease Day® and Global Movement to Raise Awareness for Rare Diseases

February 2016—ThyCa: Thyroid Cancer Survivors’ Association, Inc. (www.thyca.org) has joined forces with 30 million Americans and health care advocates around the world for Rare Disease Day® on February 29.  Rare Disease Day is an annual awareness day dedicated to elevating public understanding of rare diseases and calling attention to the special challenges people face.

ThyCa, founded in 1995 and advised by numerous thyroid cancer experts, provides free support services and resources to patients, caregivers, and professionals worldwide; sponsors events including the annual International Thyroid Cancer Survivors’ Conference and Thyroid Cancer Awareness Month, and sponsors thyroid cancer research grants open to researchers around the world.

Rare thyroid cancers include anaplastic thyroid cancer, medullary thyroid cancer, and variants of papillary and follicular thyroid cancer such as Hurthle cell cancer, tall cell, insular, diffuse sclerosing, and others. In addition, thyroid cancer is rare in children and teens.

ThyCa’s web site has free handbooks on each type of thyroid cancer, as well as numerous videos with thyroid cancer experts, plus detailed information and more resources for all thyroid cancer types.

ThyCa is supporting Rare Disease Day through informative articles sent to 65,000 people in its weekly newsletter, plus information on its web site and in social media messages. 

According to the National Institutes of Health (NIH), a disease is rare if it affects fewer than 200,000 people. Nearly 1 in 10 Americans live with a rare disease—affecting 30 million people—and two-thirds of these patients are children. There are more than 7,000 rare diseases and only approximately 450 FDA-approved medical treatments.

Rare Disease Day takes place every year on the last day of February. It was established in Europe in 2008 by EURORDIS, the organization representing rare disease patients in Europe, and is now observed in more than 80 nations. Rare Disease Day is sponsored in the U.S. by the National Organization for Rare Disorders (NORD)®.

For free materials, information, support services, and educational events about rare thyroid cancers, visit ThyCa’s website, www.thyca.org. For more information about Rare Disease Day in the U.S., go to www.rarediseaseday.us. For information about global activities, go to www.rarediseaseday.org.

All are invited to support services and research for thyroid cancer—the fastest increasing cancer diagnosis in the U.S. in recent decades 

February 4, 2016 – NEW YORK –Today, on World Cancer Day, non-profit ThyCa: Thyroid Cancer Survivors’ Association, Inc. (ThyCa) is launching a public service announcement and awareness campaign: encourage your loved ones to get a neck check. The campaign, produced by online media personality Tara Johnson, host of Words, Wine and Women (WWW), features all of the hosts of WWW and encourages everyone to get a neck check at their next doctor appointment.

The new PSA is available here and by visiting ThyCa’s YouTube channel. For more information about thyroid cancer, please visit the ThyCa website.

“ThyCa is dedicated to providing free educational materials and resources to anyone affected or impacted by thyroid cancer worldwide. We also fund thyroid cancer research to support the efforts to find cures for this fast-increasing disease. Greater awareness about thyroid cancer can help people live healthier and longer lives,” said Gary Bloom, ThyCa Executive Director and thyroid cancer survivor.

Everyone taking part in the campaign is encouraged to post on social media after getting a neck check with the hashtag #ThyCaNeckCheck, and encourage others to participate. ThyCa can be found on Facebook, Instagram @ThyCaInc, or Twitter @ThyCaInc.

About ThyCa

ThyCa: Thyroid Cancer Survivors’ Association, Inc., begun in 1995, is a non-profit 501(c)(3) organization of thyroid cancer survivors, family members, and health care professionals dedicated to support, education, and communication, as well as thyroid cancer research fundraising and research grants. ThyCa sponsors Thyroid Cancer Awareness Month plus year-round awareness activities. For more information, visit www.thyca.org, or follow us on Facebook, Instagram or Twitter.

About Words, Wine and Women

Words, Wine and Women™ is an exciting series about women empowerment that offers a unique look into the world of today’s woman. When you put five dynamic females together, you’re sure to get some pretty unforgettable conversations. We talk about controversial and sensitive subjects, and the things that matter most to the modern woman. For more information, visit www.wordswinewomen.com, or follow Words, Wine and Women on Facebook, Instagram and Twitter.

The video from the January 21st webcast meeting of the Nuclear Regulatory Commission is now available.

Thyroid cancer patients and medical professionals made many comments and recommendations.

ThyCa Executive Director Gary Bloom was one of the thyroid cancer survivors who spoke.

Click on this link to view the video. Scroll down the page to the January 21st video titled “Sodium Iodine I-131 Patient Release Information Collection”.

January 21: U.S. Nuclear Regulatory Commission Public Meeting on RAI

The U.S. Nuclear Regulatory Commission (NRC) will hold a Public Meeting titled: Sodium Iodine I-131 Patient Release Information Collection Public Workshop on January 21, 2016, from 9 a.m. to 4 p.m. The meeting location is NRC, Two White Flint North, T2B1, 11545 Rockville Pike, Rockville, Maryland, for anyone in the local area. Those outside the area may take part by phone or watch the live webcast. 

Public participation is actively sought for this meeting in order to fully engage the public in a discussion of regulatory issues. 

The purpose of this meeting is to hold a public workshop/patient release dialogue based on NRC’s information collection request published November 16, 2015, in the Federal Register, “Sodium Iodine I-131 Patient Release Information Collection.” (80FR70843) 

If you have questions, you can either e-mail ThyCa at thyca@thyca.org or Donna-Beth Howe at Donna-Beth.Howe@nrc.gov. 

ThyCa Urges Neck Checks, Provides Free Services, Materials in 8 Languages 

Thyroid cancer continues to increase in incidence, and a record total of 64,300 people are predicted to be diagnosed with thyroid cancer in 2016 in the United States, a 3% increase over 2015, reports the nonprofit ThyCa: Thyroid Cancer Survivors’ Association, Inc. (“ThyCa”) based on information from the American Cancer Society and the U.S. Department of Health and Human Services. Deaths from thyroid cancer are expected to total 1,980 in 2016, a 1.5% increase from 2015, 

Thyroid cancer affects people of all ages, from young children to seniors. About half of people diagnosed are under age 50. More than three-quarters are female. The incidence of thyroid cancer has increased rapidly over the past two decades and the number of people diagnosed has more than doubled from 10 years ago.

ThyCa urges everyone to learn about thyroid cancer and ask for a neck check at their routine medical appointments. Signs of a nodule can include voice changes, difficulty breathing or swallowing, or a bulge on the lower neck. 

“Thyroid cancer is usually treatable when found early, and is often difficult to treat if it has spread widely or is one of the rare types or variants,” says ThyCa Executive Gary Bloom, a 20-year thyroid cancer survivor. “A neck check by a medical professional during a routine appointment takes only a few seconds. Most thyroid nodules are benign, not cancer.” 

ThyCa: Thyroid Cancer Survivors’ Association, Inc., is a nonprofit 501(c)(3) organization of thyroid cancer survivors, family members, and health care professionals and is advised by thyroid cancer experts. ThyCa provides free educational and awareness materials in 8 languages, videos with experts, support services, events, and a weekly newsletter to patients, professionals, and the public around the world, by mail and by download. ThyCa also sponsors Thyroid Cancer Awareness Month each September, and 2016 marks its 14th year of awarding thyroid cancer research grants, open to researchers worldwide. For information and free materials, 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 web site at www.thyca.org. 

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Contact: Cherry Wunderlich, outreach@thyca.org, 301-493-8810, Director of Publications and Outreach, ThyCa: Thyroid Cancer Survivors’ Association, Inc

Our dream is for cures for all thyroid cancer and a future free of thyroid cancer. We fund research grants to support progress toward this dream. Researchers worldwide are eligible for ThyCa grants.

ThyCa has proudly awarded 54 grants worth more than $1.5 million in grant funding since 2003, thanks to so many generous contributions. In 2016 we will award 7 grants — three new grants and four continuation grants.

Proposals for ThyCa’s 2016 Research Grants must be submitted to the American Thyroid Association (ATA) by February 1, 2016.

An independent expert panel of the ATA will review the proposals and select the winning research projects.

Read about ThyCa’s annual Rally for Research and Research Grants.

All are encouraged to support programs for thyroid cancer—the fastest growing cancer diagnosis in the U.S. in recent decades—by donating $5 or more and tagging 5 friends on social media to donate too.

Click here to donate. 

December 1, 2015 – Today, non-profit ThyCa: Thyroid Cancer Survivors’ Association, Inc., is kicking off a 5 for $5 Campaign that will run through December 31, 2015. The campaign encourages anyone who has been affected by thyroid cancer to donate $5, or a multiple of $5, to ThyCa and then tag five friends on social media to also participate. This is the first time ThyCa has run this kind of fundraising campaign to help fund its research grants and free support and education programs worldwide. During the campaign, and anytime throughout the year, donations of any size can be made on the ThyCa web site.  

“ThyCa is dedicated to providing free educational materials and resources to anyone affected by thyroid cancer worldwide, as well as funding thyroid cancer research. Every donation, small or large, helps us continue our mission of support, education, and research as thyroid cancer diagnoses continue to impact the lives of people here in the U.S. and globally,” said Gary Bloom, ThyCa Executive Director and thyroid cancer survivor. “We hope that during the giving season, all those seeking to make a charitable contribution will consider participating in our 5 for $5 Campaign.” 

Those participating in the campaign are encouraged to post on social media why they are donating, use the hashtag #ThyCa5for5, and then tag five friends to participate. For those unable to provide a monetary donation, ThyCa still encourages them to tag five friends to spread awareness about the organization’s mission and help drive more attention to thyroid cancer. ThyCa is on Facebook and Twitter.  

ThyCa also invites those not active on social media to participate. Simply e-mail a photo to publications@thyca.org after making a donation and, with your permission, ThyCa will include the photo in an upcoming newsletter as a thank you. 

With thyroid cancer being the fastest growing cancer diagnosis in the United States over recent decades, there is growing need for research as well as for the programs and materials ThyCa provides – all of which are provided free of charge to anyone worldwide. For more details, visit the ThyCa website (www.thyca.org), email ThyCa at thyca@thyca.org, or call ThyCa at (877) 588-7904. 

About ThyCa

ThyCa: Thyroid Cancer Survivors’ Association, Inc. is a non-profit 501(c)(3) organization of thyroid cancer survivors, family members, and health care professionals started in 1995. The organization is dedicated to support, education, and communication for thyroid cancer survivors, their families and friends, as well as thyroid cancer research fundraising and research grants. ThyCa also sponsors Thyroid Cancer Awareness Month and year-round awareness activities. For more information, visit www.thyca.org, or follow us on Facebook or Twitter.

CONTACT:
Debbie Ehrman
Finn Partners
310-882-4016
Deborah@finnpartners.com 

Organized by ThyCa: Thyroid Cancer Survivors’ Association, the Conference Features More Than 100 Sessions Designed to Help, Educate, Inspire, and Support Those Impacted by Thyroid Cancer

ThyCa: Thyroid Cancer Survivors’ Association, Inc., has unveiled its impressive list of expert speakers for the 18^th International Thyroid Cancer Survivors’ Conference, taking place Oct. 2-4, 2015 at the Sheraton Westport Chalet Hotel. This unique educational and supportive conference will feature presentations on the latest medical research and advances in thyroid cancer care, specialists in insurance and employment, Ask-a-Doctor sessions, and survivor-caregiver roundtables. People have already registered from all around the United States, plus other countries, for this event designed to create learning and support opportunities for patients, families, friends, and caregivers. 

“Thyroid cancer is the fastest growincancer diagnosis in the United States, touching the lives of so many across the country. This conference is an opportunity for survivors, those currently fighting the disease, loved ones and health care professionals to come together to share their stories, learn from one another and hear about the latest advances in care and treatment,” said Gary Bloom, ThyCa Executive Director and Conference Co-Coordinator. “There is no such thing as ‘good’ cancer – as anyone who has dealt with thyroid cancer knows, and our team at ThyCa encourages anyone interested in learning more to attend this conference.” 

Among the presenters, experts are coming from the following centers:

• Children’s Hospital of Philadelphia, Pennsylvania
• Dana Farber Cancer Institute, Massachusetts
• Duke University Medical Center, North Carolina
• Georgetown Lombardi Comprehensive Cancer Center, Washington, D.C.
• Ichan School of Medicine at Mount Sinai, New York
• Massachusetts General Hospital Cancer Center, Massachusetts
• Mayo Clinic, Florida
• Moffitt Cancer Center, Florida
• National Cancer Institute, National Institutes of Health, Maryland
• New York University Clinical Cancer Center, New York
• Ohio State University College of Medicine, Ohio
• St. Johns Mercy Medical Center, Missouri
• Siteman Cancer Center, Barnes-Jewish Hospital, Washington University School of Medicine, Missouri
• University of California San Diego, California
• University of Colorado at Denver Health and Sciences Center, Colorado
• University of Missouri School of Medicine, Missouri
• University of Texas, M.D. Anderson Cancer Center, Texas
• Washington University School of Medicine, Missouri
• Yale University School of Medicine, Connecticut

The event is open to the public, most especially those in the process of being tested for possible thyroid cancer, newly diagnosed or recently treated, survivors of many years, caregivers, friends, and health care professionals. 

Attendees are welcome to join for one, two or all three days, and registration will open at 8:00 a.m. each day. The cost to attend the complete conference is $50, and scholarships are available upon request to cover the registration fee. 

Walk-in attendees will also be welcome. 

In addition to the daily sessions, St. Louis morning radio personality Guy Phillips of Y98 will host a fundraising auction and night of fun on October 3 – with one of the auction prizes being the opportunity to sit-in during a live morning show broadcast. 

For more details about the Thyroid Cancer Survivors’ Conference and the free year-round support services and education offered by ThyCa, visit the ThyCa website, email ThyCa at conference@thyca.org or thyca@thyca.org, or call ThyCa at (877) 588-7904.

About ThyCa

ThyCa: Thyroid Cancer Survivors’ Association, Inc. is a non-profit 501(c)(3) organization of thyroid cancer survivors, family members, and health care professionals. The organization is dedicated to support, education, and communication for thyroid cancer survivors, their families and friends. ThyCa also sponsors Thyroid Cancer Awareness Month, year-round awareness activities, and thyroid cancer research fundraising and research grants. For more information, visit our website, e-mail to thyca@thyca.org, or follow us on Facebook at or Twitter.  

Update November 2015:  Thank you!

With your help, we reached our goal for the #TruthAbout challenge!

This video features many people who have shared their personal #TruthAboutTC.

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Now you can tell people your truth about thyroid cancer and help dispel the myth that it is a “good cancer.” Join in the new “Myths and Truths About Thyroid Cancer” awareness and education initiative, a collaboration of ThyCa: Thyroid Cancer Survivors’ Association, the Light of Life Foundation (LoL), and Eisai Inc., designed to explain our journeys, put faces on thyroid cancer, dispel myths, and raise awareness. 

In honor of Thyroid Cancer Awareness Month and the tens of thousands who receive a thyroid cancer diagnosis each year, “Myths and Truths About Thyroid Cancer” illustrates the life-changing realities of this disease. 

A charity challenge: Upload a picture of yourself holding a sign that states #TruthAboutTC (or just a sign with #TruthABoutTC), on Facebook, Twitter, or Instagram, or like or share content related to the campaign and Eisai will donate $1 to ThyCa and LoL up to $50,000!! 

Join this campaign effort. Together all of us can create greater awareness about thyroid cancer and ThyCa, and have fun doing it. Encourage everyone you know to share their truths, as well as to like and share. The more likes and shares the greater the awareness, and the larger Eisai’s donation. 

Share your picture today, and tag two friends to help spread the word. Find out more on our Facebook page.

Click here for more information and video. 

Bridget Corcoran, ThyCa Volunteer and Board Member, with her #TruthAboutTC sign	Media Interview for the #TruthAboutTC Campaign: Marcia Brose, M.D., Oncologist at the University of Pennsylvania, and Victoria Ballesteros, Thyroid Cancer Survivor and ThyCa Board Member

In a Washington Post feature on September 8, 2015, Robert Smallridge, M.D., of Mayo Clinic Cancer Center in Jacksonville, Florida, says that patients often come to him very worried even though they’ve been told that thyroid cancer is the “good” cancer. This dichotomy often makes them feel that they’re not entitled to complain or even feel bad.

“They’re told they’re supposed to feel lucky, but they don’t. They have cancer,” says Dr. Smallridge, who is president of the American Thyroid Association.

Dr. Smallridge will speak at the 18th International Thyroid Cancer Survivors’ Conference October 2-4, 2015, in St Louis, Missouri.

Read the complete article here.