ThyCa News Notes – October 2014
- Biggest Conference Yet!
- Fun and Research Fundraising at the Dinner/Auction
- Save the Dates for St. Louis in 2015: The 18th Conference!
- Thyroid Cancer Genome Analysis Finds Markers of Aggressive Tumors
- Update on Natpara® (rhPTH[1-84])
- Over 12,000 … Facebook Likes, That Is!
- Free Seminars in California, New Jersey, New York, North Carolina, and Ontario
- Thyroid Cancer Poster at Farmers’ Market
- More Than 14,000 People Now Take Part in ThyCa’s Inspire Online Support Community
- For Medical Professionals — Free CME Symposium on Thyroid Cancer, Saturday, October 18, in Denver
- Anaplastic Thyroid Cancer Patient and Treatment in the News
- Video: Utilizing TKIs in Advanced Medullary Thyroid Cancer
- Thank You, Tamara!
- Your Donations at Work—Supporting Research
- Scarfies Raise Awareness
- Low-Iodine Recipe of the Month: Thick Spaghetti Sauce and Meatballs
- It Only Takes One Minute
- About ThyCa News Notes and ThyCa
More than 600 people from all around the United States, Canada, and United Kingdom gathered for a terrific three days at the 17th International Thyroid Cancer Survivors’ Conference, October 17-19 in Denver, Colorado.
People came from near and far for learning, support, and a sense of community. Attendees ranged from children through seniors, with all types of thyroid cancer, and varied situations with their thyroid cancer.
The 2014 program, speaker biographies, and other 2014 details will continue to be available on the web site.
Our heartfelt thanks to all our terrific speakers, volunteers, staff, guest exhibitors, and friends for your wonderful support.
Our Annual Dinner/Auction Research Benefit Fundraiser was a great success. The evening raised more than $35,000 for thyroid cancer research.
Huge thank you’s to:
• The generous donors of items, the bidders, the Fund-a-Cure contributors, and the numerous volunteers who helped set up and run the auction and check-out
• Bryan Haugen, M.D., our honoree at the dinner, for your dedication to patient care and thyroid cancer research
• The sisters who contributed their delicious cookies to raise funds in memory of Patti Malloy, who had medullary thyroid cancer and was a ThyCa volunteer.
• “Joyous Jo,” who danced on the table and raised more than $1,200 for research
• Everyone who joined us for the evening
Join us at the Sheraton Westport Chalet Hotel, 191 Westport Plaza, St. Louis, MO 63146 Friday through Sunday, October 2 – 4, 2015.
The 2015 Conference Flyer is on the web site. Print it out and share it or request a batch by e-mailing to firstname.lastname@example.org. Help spread the word!
A new comprehensive analysis of thyroid cancer from The Cancer Genome Atlas Research Network has identified markers of aggressive tumors, which could allow for better targeting of appropriate treatments to individual patients.
“This understanding of the genomic landscape of thyroid cancer will refine how it’s classified and improve molecular diagnosis, says Thomas J. Giordano, M.D., Ph.D., Professor of Pathology at the University of Michigan Medical School and Project Co-Leader with Gad Getz, Ph.D. of the Broad Institute.
Dr. Giordano adds, “This will help us separate those patients who need aggressive treatment from those whose tumor is never likely to grow or spread.”
Dr. Giordano spoke at the 17th International Thyroid Cancer Survivors’ Conference sponsored by ThyCa earlier this month. More details about his research are here.
NPS Pharmaceuticals, manufacturer of Natpara® (rhPTH[1-84]), reported on October 23, 2014, that the U.S. Food and Drug Administration has extended to January 24, 2015, its action date regarding Natpara® (rhPTH[1-84]) for the long-term treatment of Hypoparathyroidism.
Hypoparathyroidism is an endocrine disorder, involving low calcium levels in the blood, experienced by some people with thyroid cancer due to damage or removal of the parathyroid glands during thyroid surgery.
After thyroid surgery, symptoms of low calcium levels include muscle spasms as well as tingling and numbness, especially in the hands or feet. ThyCa’s web site and handbooks have more information.
The power of joining together online, or face-to-face in our support groups, workshops, conferences, and webinars is immeasurable.
To all of you, our friends, fans, followers, volunteers, advisors, supporters…Thank You!
We’re now more than 12,000 strong on Facebook and more than 2,380 on Twitter!
Our support of each other — whether giving or receiving — is an incredible gift. Thank you for joining us.
- Michael Thomas, M.D., Ph.D., Endocrinologist with Carolina Endocrine, will be the guest speaker at the October 25 meeting of ThyCa Raleigh, North Carolina, Support Group.
- A free seminar on The Aging, “Normal Voice,” with Peg Sweeny, Speech Therapist, will take place on Monday, November 3, from 6 p.m. to 7:30 p.m. at the meeting of the ThyCa Jersey Shore University Medical Center Support Group.
- Endocrinologist Stuart Morduchowitz, M.D., will be the guest speaker at the meeting of the ThyCa Long Island Support Group on Sunday, November 9 from 1 p.m. to 3 p.m.
- On Tuesday, November 18, from 6:30 p.m. to 8:30 p.m., the guest speaker at the meeting of the ThyCa Ontario, Canada, Support Group will be Leslie Groves, pharmacist from Brockville Rexall. She will discuss taking and storing your thyroid medication, different types of thyroid medications, and uses and interactions of supplements (e.g., calcium) with thyroid medication.
- Thyroid Disease and You is a free 2-hour forum with physician speakers on all thyroid diseases (hypothyroidism, hyperthyroidism/Graves’ disease, thyroid cancer), on Saturday, November 1 from 1 p.m. to 3 p.m. at the Hotel Del Coronado, 1500 South Orange Avenue, Coronado, California. This event is sponsored by the American Thyroid Association, ThyCa: Thyroid Cancer Survivors’ Association, Inc., and other organizations.
- A free webinar for bloggers interested in thyroid cancer will take place on Tuesday, October 28, 2014, from 6:30 p.m. – 8:00 PM EDT is hosted by Genzyme. Gary Bloom, Executive Director of ThyCa: Thyroid Cancer Survivor’s Association, Inc., is one of the speakers. The webinar will cover radioactive iodine treatment options, the role of Thyrogen® (thyrotropin alfa for injection), and support services and education for people with thyroid cancer.
Angel Conicelli created a colorful poster to raise awareness of thyroid cancer at her local farmers’ market co-op in Wrightstown, Pennsylvania. She displayed it with a table filled with Thyroid Cancer Basics and other ThyCa materials. Thank you, Angel!
Our ThyCa Inspire Online Support Community has reached a new milestone: 14,000 people! Thyroid cancer survivors from teenagers to people in their eighties take part in this support community. They live in all parts of the world.
Online support is an opportunity for people to send messages back and forth with fellow thyroid cancer survivors going through their thyroid cancer journeys. It can be especially beneficial for people who either don’t live near a face-to-face support group, or are unable to attend the meetings.
To learn more, to join this free support community, and to get details about our local support groups, visit our Support Groups web pages.
A free CME symposium for medical professionals focused on Thyroid Cancer Care and Research and took place on Saturday, October 18, 2014, at the Doubletree by Hilton Denver Hotel in Denver, Colorado.
Physicians attending the CME event received continuing medical education credits from Rose Medical Center.
The DNA of a woman whose anaplastic thyroid cancer unexpectedly “melted away” for 18 months has revealed new mechanisms of cancer response and resistance to the drug everolimus, according to researchers from Dana-Farber Cancer Institute and Broad Institute of MIT and Harvard. The ATC patient is still alive after 4 years.
Here’s the article from Dana Farber.
The New York Times discussed this patient also, in its article titled “Finding Clues in Genes of ‘Exceptional Responders’.”
Specialists describe studies that compared TKIs, vandetanib (Caprelsa®) and cabozantinib (Cometriq®), to placebo in patients with advanced medullary thyroid cancer. They discussed when a patient should start a TKI. Here is the video.
Tamara Chapman wrote us this week about her highly successful Thyroid Cancer Awareness Display and Fundraiser.
To wrap up ThyCa Awareness Month, the barre fitness studio also did a final ThyCa Thursday and they donated 10% of their retail sales to ThyCa! It was awesome!
Thanks to your generous donations, both small and large, ThyCa has awarded 6 thyroid cancer research grants in 2014, and 47 research grants in all, for a total of more than $1.3 million dollars!
Together we can work toward our dreams of a world free of thyroid cancer.
Our grants support research on all types of thyroid cancer— papillary, follicular, variants, medullary, and anaplastic.
We’re proud to be in our 14th year of fundraising for research for cures for all thyroid cancer. Our grants are open to researchers and institutions worldwide.
You’re invited to join the ThyCa Rally for Research.
Visit our Rally for Research page to learn more and to donate.
Thanks very much to all who raised awareness on Twitter through your Scarfies4Thyca. Here are two, from @jessiegoldblum and @livinginsteil.:
Here’s more about Scarfies4thyca.
Thick Spaghetti Sauce and Meatballs
Karen writes, “My husband loves thick spaghetti sauce so I came up with the following recipe and he loves it. I found a new product in the canned tomato section. Pure strained tomatoes from Italy, no salt added.
4 boxes of strained tomatoes
10 garlic cloves, chopped
1 large onion, chopped
1 Tablespoon dry oregano leaves
1 Tablespoon dried basil
1 teaspoon of black pepper
1 1/2 Tablespoons of Kosher salt
4 Tablespoons of white sugar
1/8 cup olive oil
2 pounds ground beef
1/3 cup egg whites
2 cloves of garlic
1 chopped onion
2 slices of your homemade bread made into breadcrumbs (I run it through my food processor)
1 teaspoon salt
1/2 teaspoon black pepper
Roll meat into small balls and fry in olive oil. Pat dry before you add them to the sauce. Makes approx. 20-24 meatballs. They are easy to weigh. After you cook they normally weigh 2 ounces each…so you can have 2 or 3.
I put everything in a Dutch oven on low and cook it at least 6 hours. I normally make it at a day ahead of when we are going to use it. It freezes well.
We make our favorite salt free pasta to go with it, and you have a great meal.
Thank you, Karen! We will include your recipe in the next edition of ThyCa’s FREE Downloadable Low-Iodine Cookbook.
Free and Downloadable: Click on the Cookbook link on our home page to 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.
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 email@example.com.
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 possible our services and Thyroid Cancer Research Grants.
It only takes a minute to make a donation online in support of ThyCa’s services and research funding (or you are welcome to donate by mail to ThyCa, P.O. Box 1102, Olney, MD 20830-1102).
We thank you in advance for your support!
Copyright (c) 2014 ThyCa: Thyroid Cancer Survivors’ Association, Inc.
This newsletter and ThyCa’s many other services and thyroid cancer research grants are made possible through the generous contributions from our donors and volunteers. Thank you!
We invite everyone’s contributions, small or large, financial and volunteer service. Together we make a difference!
You’re invited to share this newsletter with your family and friends. If you would like to suggest further topics or contribute an article, please contact us at firstname.lastname@example.org.
Thank you to our writing, editing, and proofreading team for this issue: Karen C., Kristy F., Leah Guljord, Pat Paillard, Barb Statas, Theresa Wickerham, Cherry Wunderlich, and Gary Bloom.
The information is intended for educational purposes only. It is not intended, nor should it be interpreted, as medical advice or directions of any kind. Readers are advised to consult their own medical doctor(s) for all matters involving their health and medical care.
ThyCa: Thyroid Cancer Survivors’ Association, Inc. is a non-profit 501(c)(3) organization (tax ID #52-2169434) of thyroid cancer survivors, family members, and health care professionals serving people worldwide and dedicated to education, support, communication, awareness for early detection through Thyroid Cancer Awareness Month and year-round campaigns, and fundraising for thyroid cancer research.
Visit our website for information about thyroid cancer, events, and how to help. Ask us for free materials and information. E-mail to email@example.com call toll-free at 1-877-588-7904, fax 1-630-604-6078, write PO Box 1102, Olney, MD 20830-1102.