ThyCa News Notes - October 2013

Contents:

• Support 4th Stage Cycling
• 2013 Thyroid Cancer Survivors’ Conference a Big Success
• The 2014 Conference: Mark the Dates!
• 2013 Conference Participants Comment
• ThyCa and ITOG Cooperate To Support Treatment Advances
• Jennifer Completes Her Hike!
• Calling all Adolescents and Young Adults (AYA) Thyroid Cancer Survivors
• MTC Handbook Available
• Standing with NORD
• Tai Chi and Qi Gong Sessions at the 2013 Conference
• Have you signed our Guestbook?
• Honoring and Remembering Others
• Watch for New Spirit Items!
• Watch the Videos
• Low-Iodine Recipe of the Month – Cinnamon Rolls
• Get Involved with Virtual 5K To Support ThyCa’s Research Funds
• News From the Rally for Research
• Follow Us on Facebook and Twitter
• Every Day
• About ThyCa NEWS NOTES and ThyCa

Support 4th Stage Cycling
Rob Bohning has created 4th Stage Cycling to bring people together through cycling and to raise funds for Medullary Thyroid Cancer Research through ThyCa’s Research Grants.

This terrific ongoing fundraiser brings cancer patients, cancer survivors, and caregivers together through the bond of cycling.

“Hi friends,” Rob writes. “Our most recent cancer ride was this past Saturday. It was called the ‘2013 Ride to Cure Cancer.’ I rode the 50-mile route. It’s not too late for you to donate toward the cause of a cure for medullary thyroid cancer, you can sponsor me on this ride by making a flat donation or donating per mile. All donations are made directly to ThyCa: Thyroid Cancer Survivors' Association, Inc. (www.thyca.org).”
 
For how and where to donate, get details on 4th Stage Cycling’s Facebook page at https://www.facebook.com/4thStageCycling, and find out how to support Rob’s wonderful fundraising effort.
 
Donate online to the 4th Stage Cycling fundraiser, through the article on our Rally for Research page.

All donations and proceeds go directly to ThyCa’s Medullary Thyroid Cancer (MTC) Research Fund to support research on MTC.

Thank you for your support of Rob, 4th Stage Cycling, and Medullary Thyroid Cancer Research!
 
top of page
 

2013 Thyroid Cancer Survivors’ Conference a Big Success
The 16th annual International Thyroid Cancer Survivors’ Conference drew a record breaking 550 participants from near and far. Through this conference, ThyCa brings together experts to share about the latest research, advances in treatment, follow-up and coping skills for the well-being of people with all types of thyroid cancer, as well and their caregivers.
 
With more than 60 speakers and workshop leaders, the conference featured more than 100 sessions on medical topics, coping skills, insurance and employment, and more.
 
top of page
 
The 2014 Conference: Mark the Dates!
Join us in Denver next year! Save the date: Our 17th International Thyroid Cancer Survivors' Conference will be held at the Doubletree by Hilton in Denver, Colorado, on October 17-19, 2014.

Please check back to the web site frequently over the coming months to learn the details as they unfold.
 
top of page

2013 Conference Participants Comment
From a First-Time Attendee:
This was my first conference and I thank you for choosing Philadelphia this year! I gathered so much valuable information from the experts to guide me through my lifetime of treatment. Thank you to Thy Ca and to all the volunteers and physicians who participated to make this conference so successful. We thyroid cancer survivors are very fortunate to have such a wonderful resource in ThyCa to turn to for information and support!

From Another:
My daughters and I really enjoyed the conference, we learned so much and can't wait for Colorado next year. Thanks so much to all the volunteers and speakers. What a great event.
 
From Virginia:
It was Phenomenal!!! Four folks from our support group made the trek. The offerings were thoughtful and so rich with info and compassion. I am bowled over, thrilled, smarter. GRATEFUL.

From United Kingdom:
Thank you ThyCa and everyone involved for a great conference, new information, inspiration, and amazing friends. And a special thank you for a wonderful welcome to me coming from the U.K.

From North Carolina:
Thank you for making it another great conference!

From Oklahoma:
I was so thrilled to be there ~ you all are wonderful!!

From Pennsylvania:
Thanks people of ThyCa for all you do! What a wonderful and informative weekend! I have learned SO much and I am SO inspired by the strength of the survivors I have met and by the intelligence and drive of those in the forefront of the ThyCa fight (you all are rock stars!)
 
From Judy:
Thank you to all the conference volunteers, doctors, etc. I appreciate the efforts that went into this, my first. It was intense, educational and totally worthwhile. I have met some great people. A great experience. A new family.

From Florida:
Great Job!!

top of page

ThyCa and ITOG Cooperate To Support Treatment Advances
ThyCa Conference participants learned in two sessions about the work of the International Thyroid Oncology Group, from speakers Steven Sherman, M.D., Lori Wirth, M.D., and Dwight Vicks, ITOG board members.

Dr. Sherman and Dr. Wirth presented ITOG’s mission which is to find and develop therapies for the most difficult to treat advanced thyroid cancers through designing, coordinating, and prioritizing state-of-the-art clinical trials and correlative science. ITOG’s first clinical trial, a major milestone, is a phase II trial of cabozantinib as 2nd line therapy for differentiated thyroid cancer that progresses on first line anti-VEGFR therapy. Four additional ITOG trials are now in development and planning.  
 
Dr. Steve Sherman summed up his enthusiasm by saying, “I always enjoy presenting at the annual ThyCa conference.  As a physician, I don’t often get to speak to, and learn from a large group of patients at the same time.  I am always inspired and motivated by the people I meet, and the stories I hear.  With ITOG on its way to fulfilling a deep medical need, I am even more excited about the opportunity to present here and work with ThyCa.”

After the ITOG sessions, Gary Bloom, Executive Director of ThyCa: Thyroid Cancer Survivors’ Association said, “ThyCa's mission of being the organization committed to support and education for all people impacted by a thyroid cancer diagnosis, as well as research for cures, complements ITOG's mission of developing new treatments for advanced thyroid cancer. I look forward to strengthening our relationship with ITOG and its members in the years ahead."

Eighteen medical and scientific presentations were made by ITOG members in addition to the ITOG overview sessions.

top of page

Jennifer Completes Her Hike! Congratulations!
Jennifer Smart has completed her amazing hike of the 2,650 miles of the Pacific Crest Trail!

Standing with NORD

During early October, ThyCa stood with the National Organization for Rare Disorders (NORD) and more than 100 rare disease patient organizations and medical experts in supporting NORD’s letter urging the U.S. Congress to end the U.S. government shutdown.  The letter cited the importance of ongoing research at the National Institutes of Health (NIH) and the review of new therapies by Food and Drug Administration (FDA), as critical to the health and well-being of patients, yet halted by the government’s closure. The letter urged Congress to reopen the government.

The letter, dated October 11, 2013, was addressed to the leadership in both houses of Congress and pointed to the heightened need for ongoing research for patients of rare diseases, 2/3 of which are children.  It appeared that many patients in these high-risk conditions were unable to enter clinical trials during the shutdown, placing their health at further risk.

NORD is a nonprofit organization representing nearly 30 million Americans who have rare diseases. NORD posted the letter on its web site.

top of page

Tai Chi and Qi Gong Sessions at the 2013 Conference
By Rick Abrams

Ramel (Rami) Rones, internationally known mind-body, Qi Gong, & Tai Chi expert who teaches at hospitals in the Boston, Massachusetts area, and is also a researcher and author, led two capacity-filled sessions at the 2013 International Thyroid Cancer Survivors’ Conference in Philadelphia, Pennsylvania.

In addition to Tai Chi and Qi Gong, Rami integrates meditation and deep breathing with gentle movements to help patients improve their body, mind, energy and spirit.  He teaches at the Dana-Farber Cancer Institute in Boston, Tufts University Medical School, Boston Medical Center and has consulted with Harvard Medical School, Boston Children’s Hospital and other health-related organizations. He designed the Tai Chi training for a study that looked at the benefits of using Tai Chi for Fibromyalgia; results were published in the New England Journal of Medicine.

Lori Cuffari, who attending one of Rami’s sessions, remarked, “I loved the session and didn’t want it to end. As a patient with advanced thyroid cancer, I’m always looking for a way to control the madness. The drugs beat us up…badly.  But practitioners like Rami can make a bad situation palatable and bearable.”

After the session, Rami summed up his excitement about teaching at the conference by saying, "Teaching two sessions at the ThyCa Conference reminded me how nice, curious, and genuine cancer survivors and their families are when it comes to empowering themselves with mind-body approaches to complement their goal to improve their quality of life. Rick Abrams, friend and ThyCa member and I gave all attendees a coupon to take my online course for free, and I'm very happy that so many people are taking us up on this. I wish everyone great success."

An informal survey of participants overwhelmingly expressed their hope that Rami will come back next year when the 2014 Conference will be in Denver.

For more information about Rami, visit: www.ramelrones.com

top of page

Have you signed our Guestbook?
Sign up and we'll put you on our mailing list for ThyCa News Notes and special announcements including events and activities. We'll also send you our free patient information packet!


top of page

Honoring and Remembering Others
Is there someone you'd like to celebrate, honor, or remember and benefit thyroid cancer research at the same time? We have lovely “Tribute Gift Cards” for special occasions like birthdays, congratulations, get-well messages, sympathy, memorials, and more, that do just that!

top of page

Watch for New Spirit Items!
The Spirit items are great to wear, carry, and use. These items are great for your and as gifts. Added new items coming soon! Get your orders in early.

top of page

Watch the Videos
Each of us navigates our lives and thyroid cancer in our own unique way. Sharing and listening to each others' stories, experiences, and hopes is powerful. Thanks to Rick and Lori for sharing their stories with us.

More videos are available here.
 
top of page

Low-Iodine Recipe of the Month 
Contributed by Natalie W.
Natalie writes,

Thank you for your great cookbook.

My sister has thyroid cancer and will undergo RAI next week. I have been cooking for her.

One of the things she missed was cinnamon rolls. I took the bread recipe contributed by Nina G. on page 90 of the Cookbook’s 7^th Edition, and altered the rolls section.

1 1/2 Tablespoons cinnamon

1 cup sugar

1/4  cup canola oil

a tiny bit of water if needed to make it spreadable.

Instead of making a loaf, I divided the dough into 14 pieces. Then I flattened each piece with my fingers and added 2 tablespoons of the cinnamon mix and spread it out. Then I rolled the flattened dough so the cinnamon mix created a swirl from the center outward. Place on cookie sheet this way.

Any remaining cinnamon mix was smeared on top of the buns. Bake in the oven about 10 minutes until a toothpick came out clean.

My sister loves them.

Thank you, Natalie, for contributing this recipe. We will include it in the next edition of ThyCa’s FREE Downloadable Low-Iodine Cookbook.

Free and Downloadable

Download the 7th edition of the Low-Iodine Cookbook in English for free, with more than 340 favorite recipes from more than 150 generous volunteers.

The Cookbook is also available in:

• Spanish and
• French

Please remember, while you’re welcome to download and print the entire free low-iodine cookbook, you can also print just the pages you need.

This free cookbook is a wonderful help when you’re preparing to receive radioactive iodine for treatment or testing. All the recipes are favorites of some of our ThyCa volunteers, who are sharing them with everyone, to make the low-iodine diet easy and tasty. The recipes are also great for family meals and for potlucks, any time.

To contribute your favorite recipe or tip, send it to recipes@thyca.org.

top of page

Get Involved with Virtual 5K To Support ThyCa’s Research Funds
Gather friends, colleagues and relatives to stretch your legs, get your heart rates up and raise funds for ThyCa with a Virtual 5K Research Fundraiser! It’s easy to take part, wherever you are!

top of page

News From the Rally for Research
We support thyroid cancer research, and have awarded more than $1.2 million in thyroid cancer research grants to researchers in 5 countries thanks to your support!

ThyCa's Research Grants are open to institutions and researchers worldwide, with grant recipients selected by an independent expert panel of the American Thyroid Association.

Read more here, and find out how you can help, on the official Rally for Research page: www.thyca.org/rally.htm

top of page

Follow Us on Social Media

• Facebook
• Twitter

We're now over 8,500 strong on the ThyCa Facebook page and over 1,500 on Twitter! 

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

top of page

Every Day
Every day, thousands of people with thyroid cancer, and their families, receive support, education, and hope from ThyCa: Thyroid Cancer Survivors' Association, Inc. Your generous support is what makes it possible to sustain, strengthen, and expand our services and outreach.

It only takes a minute to make a donation online (http://www.thyca.org/donations/) in support of ThyCa's work (or you are welcome to donate by mail to ThyCa, P.O. Box 964, Chesterfield, MO 63006-0964).

top of page

About ThyCa NEWS NOTES and ThyCa
Copyright (c) 2013 ThyCa: Thyroid Cancer Survivors' Association, Inc.

Please share ThyCa News Notes with your family and friends. For permission to reprint in another electronic or print publication, please contact us at publications@thyca.org. 
 
Thank you to our writing, editing, and proofreading team for this issue: Rick Abrams, Leah Guljord, Pat Paillard, Barb Statas, Natalie W., Cherry Wunderlich, and Gary Bloom.