ADVOCACY


Advocacy

Dear Georgia, 

Your advocacy work is truly something to behold. It is the very stimulus you give to the need for testing with intent to education about management, foremost of which is colonoscopy, preferably initiated by age 25 and repeated every other year to age 40 and then annually thereafter. This procedure, in the hands of a knowledgeable gastroenterologist or colorectal surgeon can lead to the saving of countless lives of patients manifesting the Lynch syndrome.

You are to be congratulated for your leadership role in this endeavor. 

Sincerely, 

Henry T. Lynch, M.D.
Chairman, Preventive Medicine and Public Health
Professor of Medicine, Director of Creighton’s Hereditary Cancer Center
Department of Preventive Medicine


Georgia Hurst has been on a tireless mission to raise awareness about Lynch syndrome and other hereditary cancers. Our office at CDC has been working with Georgia since 2015 as part of an action collaborative on genomics and population health. The collaborative has now more than 40 stakeholders and collaborators trying to raise awareness, develop tools and resources and catalyze actions at the public health-health care interface to save lives and prevent cancer and heart disease associated with common genetic mutations.

Georgia’s efforts are truly appreciated and her service to the patient community and the general public is truly invaluable.

Sincerely,

Muin J.  Khoury MD, PhD

Director, Office of Public Health Genomics

Centers for Disease Control and Prevention


August 3, 2017: The Huffington Post

When It Comes to Genetic Information Sharing is Caring

Kaylene Ready interviews Georgia Hurst, the founder and executive director of the nonprofit ihavelynchsyndrome.org


June 1, 2017 #GenCSM: Men and Hereditary Cancer Syndromes.

Transcript

 


May: Attended  The Fifth Annual Basser Scientific Symposium

Thursday, May 4 and Friday, May 5, 2017 at the University of Pennsylvania. The Basser Center for BRCA sponsors an annual scientific symposium, “BRCA1, BRCA2 and Beyond: An Update on Hereditary Cancer,” which began in 2013 and is held every spring at the University of Pennsylvania. The symposium features BRCA experts from around the world and covers recent advances and future directions in BRCA research and clinical management of carriers. A highlight of the symposium is an address from that year’s keynote speaker and Basser Global Prize awardee.


March 2017 – Current: National Society of Genetic Counselors’ Digital Ambassador Member

The National Society of Genetic Counselors Digital Ambassador program is a group of influencers with unique perspective and knowledge in the fields of genetics and genetic counseling


March 27, 2017 #GenCSM

Transcript


Feburary 24, 2017

Attended The Genomics and Population Action Collabarative (GPHAC) Leadership Meeting, Washington, DC.

 


February 23-24, 2017

Attended: Approaches to Blue Ribbon Panel Recommendations: The Case of Lynch syndrome. Rockville, MD.


February 16, 2017

Opening Speaker at Counsyl’s 2017 National Sales Meeting in Austin, Texas. 
Discussed ihavelynchsyndrome.org’s advcocy efforts and #GenCSM.

https://www.counsyl.com

 


#GenCSM

 Twitter December 5, 2016

Transcript

1


December 1, 2016 in Chicago

Screening and fundraiser

PINK AND BLUE takes a profound look into the BRCA world examining what it is and how this mutation puts both women and men at a higher risk of developing numerous cancers.

https://www.tugg.com/events/pink-blue-colors-of-hereditary-cancer-ertt


November 2016

Patient advocate, Georgia Hurst, shares about the hereditary cancer syndrome that she has, Lynch syndrome. It is an inherited disorder that increases the risk of many types of cancer, particularly cancers of the colon and rectum, and the reproductive organs in woman depending on which of the five Lynch syndrome mutations they hold.

http://dnapodcast.com/episodes/2016/11/23/57-georgia-hurst-on-lynch-syndrome

DNAInfo

 

 

 

 

 


#GenCSM

On Twitter August 2016:  Hereditary Cancer 101 w/special guest Erica Ramos M.S., CGC

Transcript1

 


gencsm

 has now evolved into #GenCSM with   & .

Focused on  and  on Twitter.


October 2016

reimagining-men-cancer-coverunknown

 

 

 

 

 

 

Georgia Hurst of ihavelynchsyndrome.org expended considerable time and effort in reviewing the medical content of these books.

-Mark Boguski MD, PhD and Michelle Berman, MD, and David Tabatsky 

America’s fascination with celebrities never gets old. From People magazine, with a readership of 43 million to Internet sites like JustJared.com with over 80 million monthly views, celebrity information not only sells, it educates people about important issues––including cancer. Information is empowering and reading about a famous person coping with cancer can not only be inspiring, it can save a life. That’s what Reimagining Cancer exemplifies through each of the books in the series

Cancer doesn’t have to be a death sentence. About half of all cancers are preventable and can be avoided if current medical knowledge is better delivered*. Reimagining Men’s Cancers―focusing on cancers of the prostate, penis, and testicles―provides readers with that critical information to help them manage, cope, and recover through a concise, easy-to-read style and format.

Beginning with a view of basic anatomy and an overview of how we view a particular cancer today, chapters flow easily into an explanation of signs, symptoms, diagnosis, scientific information and guidelines, and include a comprehensive survey of treatments and prevention. Woven throughout are stories, both medical and anecdotal, from men such as Joe Torre, Robert De Niro, Sir Ian McKellen, and Scott Hamilton.

Education is the key, and by using celebrity stories, Reimagining Men’s and Women’s Cancers can attract countless readers who might otherwise not pay attention to an epidemic that is likely to affect them or a loved one.

* The recent World Cancer Report from the World Health Organization

https://www.amazon.com/Reimagining-Mens-Cancers-Personalized-Prevention/dp/0757319556

https://www.amazon.com/Reimagining-Womens-Cancers-Personalized-Prevention/dp/075731953X


September 2016

Patient Stories: Georgia Hurst and Lynch syndrome

Patient Stories: Georgia Hurst and Lynch syndrome

http://www.aboutgeneticcounselors.com/Genetic-Counseling/Patient-Stories


Current

aaeaaqaaaaaaaalhaaaajda2otgwmzrhlwi3m2qtngvjnc04yjrhltfmmgq2mwywowrizq

Genomics and Population Health – A Precision and Public Health Activity

Action Collaborative Participant

www.nationalacademies.org/hmd/Activities/Research/GenomicBasedResearch/Innovation-Collaboratives/Genomics-and-Population-Health.aspx

UNDERSTANDING HEREDITARY CANCER SYNDROMES AND THE ROLE OF CERTIFIED GENETIC COUNSELOR 

By Georgia M. Hurst

NSGC-logo


An Advocate for the Previvor Community: Introducing Georgia Hurst by Dr. Robin McGee, CKN Patient Advocacy Editor
https://cancerkn.com/an-advocate-for-the-previvor-community-introducing-georgia-hurst/

Transcript

Angelina’s Impact: Advocates Sharehttp://www.mygenecounsel.com/blog-recent-posts/2016/5/31/angelinas-advocates


IMG_5950

Ambry_logo-300dpi

 

 

Frequent contributor to http://patients.ambrygen.com/cancer

May 9, 2016: http://patients.ambrygen.com/cancer/blog/54/no-mud-no-lotus

June 6, 2016: http://patients.ambrygen.com/cancer/blog/68/the-importance-of-genetic-counseling-with-genetic-testing

June 20, 2016http://patients.ambrygen.com/cancer/blog/74/approaching-surgical-decisions-as-a-previvor-of-a-hereditary-colon-cancer-syndrome

July 4, 2016: http://patients.ambrygen.com/cancer/blog/81/adjusting-to-frequent-colonoscopies

August 1, 2016: http://patients.ambrygen.com/cancer/blog/93/possible-and-unexpected-outcomes-of-genetic-testing-benefits-of-having-a-knowledgeable-healthcare-provider

November 24, 2016. Thanksgiving.  http://patients.ambrygen.com/cancer/blog/116/collecting-your-family-s-medical-history-during-the-holidays

January 5, 2017. http://patients.ambrygen.com/cancer/blog/122/overcoming-my-death-anxiety-related-to-lynch-syndrome

March 2, 2017. http://patients.ambrygen.com/cancer/blog/129/march-is-colorectal-cancer-awareness-month-do-you-know-about-lynch-syndrome


April 2016

klear-01-01-730x338

Georgia Hurst is ranked in the top 5% users on social media. Influential in Cancer, Health, and Colon Cancer. http://klear.com/profile/ShewithLynch

 


April 2016

spotlightQ & A with Georgia Hurst: Georgia Hurst is a patient advocate for people with hereditary non-polyposis colorectal cancer (HNPCC), also known as Lynch syndrome – a pre-cancerous condition known to increase the chances of developing bowel cancer. Georgia lives with Lynch syndrome and runs her own website called  I Have Lynch Syndrome which is dedicated to raising awareness about the condition.

http://www.diseasespotlight.com/bowel-cancer-georgia-hurst/


March 2016

MGCBeyond BRCA: Lynch Syndrome

This article is part of a series built to highlight rare hereditary cancer syndromes.

Here’s Georgia’s story of living with Lynch syndrome.


April 2015 – June 2016

#Hcchat: HereditaryCancerChat

#Hcchat: HereditaryCancerChat

#Hcchat: Ellen Matloff, President of My Gene Counsel, and Amy Byer Shainman, BRCA advocate extraordinaire, and I have all partnered to discuss hereditary cancer syndromes every other month on Twitter under the hashtag, #Hcchat. We include special guest commentators who are the leaders in their fields to comment and answer questions for our audience. Please click on the link below for more information. We have made over 160 million impressions on Twitter with #Hcchat to date: http://goo.gl/dxvNui

Please click on the link below for more information.

https://twitter.com/Hc_chat?lang=en&lang=en

and on Facebook: https://www.facebook.com/Hcchat-Hereditary-Cancer-Chat-870388953054442/


2016 – Sponsorship pathwayPathway Genomics is an ethically based genetic testing lab and participates in the #FreeTheData movement and proudly supports ihavelynchsyndrome.org’s advocacy efforts.

Ihavelynchsyndrome.com is tireless in its efforts to raise awareness about Lynch syndrome and Georgia’s selfless dedication is an inspiration. We share a passion for educating and empowering people to be proactive about their health, so we are happy to offer our support,” – Pathway Founder and CEO Jim Plante.


 

November 2015 -Current

0f70924b-56c8-498e-a22d-ded4798a9a0b

Invited in November 2015 as a key leader in the Lynch syndrome community to participate at the Roundtable on Translating Genomic-Based Research for Health at the Institute of Medicine (IOM) of the National Academies of Sciences, Engineering, and Medicine.

goo.gl/80UV7S


October 2015

CDC-logo-03.12.15-low-res
Living with Hereditary Breast and Ovarian Cancer Syndrome and Lynch Syndrome: Georgia
Please click on the image below to read the piece. 

Living with Hereditary Breast and Ovarian Cancer Syndrome and Lynch Syndrome: Georgia


August 2015

Acta Medica International, India.

Letter To The Editor: I Have Lynch syndrome by Georgia Hurst


 

GreekOncoJuly 2015

Forum of Clinical Oncology: Greece. Editorial:

I Have Lynch syndrome by Georgia Maria Eliopoulos – Hurst

http://www.degruyter.com/view/j/fco.2015.6.issue-2/fco-2015-0011/fco-2015-0011.xml?format=INT

 

 


July 2015

tanseyAustralia: The voice of Lynch syndrome, this woman has made it her mission to empower those diagnosed with HNPCC (Lynch), and share experiences and information for a better life.

It wasn’t long after I began blogging that I connected with Georgia, and I have been in awe of her dedication to creating a supportive and thriving community, and how she continually seeks to learn and communicate with compassion as her advocacy has gained momentum. Never shying away from the truth, Georgia communicates her truth with strength and honesty, and some cheeky humour in there too. Thank you beautiful, for giving us a glimpse into what is true for you.

http://www.autumntansey.com/read/truth-speaker-truth-seeker-georgia-hurst


CCpodcast

May 4, 2015

Lee SilverStein discusses Lynch syndrome, and Genetic Testing and Genetic Counseling with Georgia Hurst and Ellen Matloff.

https://itunes.apple.com/us/podcast/11-lynch-syndrome-genetic/id970806995?i=341331987&mt=2

 


April 17, 2015

checkMy Diagnosis, My Choice: What It Means To Be a Carrier by Melanie Breault

http://rhrealitycheck.org/article/2015/04/17/diagnosis-choice-means-carrie

 


 

The diagnosis of a hereditary syndrome that can lead to colorectal cancer—such as Lynch syndrome or familial adenomatous polyposis (FAP)—can be permanently life-changing, counselors and patients agree. BY DON VAUGHAN

2015_03-16_georgia-hurst-700px

http://www.curetoday.com/articles/Persevering-Through-Change#sthash.JoXbTpCy.dpuf


DNAInfo

April 2015

Georgia Hurst shares her and her family’s experience having Lynch syndrome and how she started her non-profit, IHaveLynchSyndrome.com. Amy Byer Shainman describes her documentary, Pink and Blue, and being a BRCA1 positive previvor. Ellen T. Matloff is the President and CEO of MyGeneCounsel and shares her insight on the importance of understanding genetic testing and genetic counseling and we all weigh in on Angelina Jolie’s impact on both.


er2

April 2015

The Cancer Warrior: Guests Amy Byer Shainman and Ellen T. Matloff join Georgia Hurst, join Mel on the show to talk about The Angelina Effect, genetic testing, and Lynch syndrome.

Genetic Testing and What You Should Know: Empower Radio

http://t.co/0d4xa9IGq

 


powerful-patient-logo

Joyce and Mike speak with Georgia Hurst as part of Lynch Syndrome Awareness Week. March 2015.

Georgia Hurst is a patient advocate for those with Lynch syndrome. She is the founder of the website and blog: http://ihavelynchsyndrome.org. She frequently writes about the emotional aspects of having Lynch syndrome, and writes for various websites and journals in order to create awareness amongst the global medical community about this hereditary cancer syndrome.

http://www.blogtalkradio.com/powerful-patient/2015/03/26/cancer-in-families–lynch-syndrome


February 2015 – September 2016

cure-logo

Georgia Hurst is a patient advocate for those with Lynch syndrome and a monthly contributor to Cure. She is the founder of the website and blog: ihavelynchsyndrome.org. She frequently writes about the emotional aspects of having Lynch syndrome, and writes for various websites and journals in order to create awareness amongst the global medical community about this hereditary cancer syndrome. Georgia is a wife and mother, and loves espresso, books, and being bossed around by her adorable dog named Sid …

http://www.curetoday.com/community/georgia-hurst


 

Ohio State University's Comprehensive Cancer Center - James Cancer Hospital & Solove Research InstituteBook review: Waiting for Cancer to Come by Sharlene Hesse-Biber. Reviewed and excerpt reprinted with permission from Georgia Hurst. http://goo.gl/CfCmsQ

10 Things Lynch syndrome has Taught Me. Reviewed and excerpt reprinted with permission from Georgia Hurst http://goo.gl/k0touV

 


 

icon

September 5th, 2014

Focus on Prevention:

Posted by Georgia M. Hurst, Guest Blogger http://blog.preventcancer.org/2014/focus-prevention/

 

 


bsgslogoexs-lynchsyndrome-02

Jun 5, 2014

Hero of the Month Q&A: Lynch Syndrome Advocate Georgia Hurst

www.beseengetscreened.com/…/hero-of-the-month-qa-lynchsyndrome-…  – Our June Hero of the Month is Georgia Hurst, Lynch syndrome advocate and founder of IHaveLynchSyndrome.com.


May 1, 2014

cancer-netMy Genetic Nemesis | Cancer.Net http://www.cancer.net/blog/2014-05/my-genetic-nemesis

 Georgia Hurst, a Lynch syndrome advocate, describes from her personal experience the emotional and physical toll being diagnosed with a …


 

w-midlsex_large

Guest blog from Georgia Hurst, Lynch Syndrome ‘previvor’: https://familyhistorybowelcancer.wordpress.com/…/guest-blog-from-geo Aug 24, 2013 – A guest blog from Georgia Hurst, as she worries about the impact of her diagnosis of Lynch Syndrome on her son.

Guest blog from Georgia Hurst: ihavelynchsyndrome.com Jul 30, 2013 – Thanks to Georgia Hurst for this insightfularticle based on her personal experiences with Lynch syndrome.

https://familyhistorybowelcancer.wordpress.com/…/guest-blog-from-geo… 


BBN buddhist broadcasting network bbncommunity com

Dec 30, 2013

The Buddhist with Lynch syndrome – BBN News www.bbncommunity.com/buddhist-lynchsyndrome/  – Georgia M. Hurst, a follower and a fan of BBN is the founder of ihavelynchsyndrome.com. This is her story that she would like to share with you.


Jun 23, 2014

Survivor: Strength While Living with Lynch Syndrome | Well …

Georgia Hurst was diagnosed with lynch syndrome and has devoted herself to educating others on the psychlogical and emotional needs with …

www.getwellpack.com/…/14655029-survivors-story-georgia-finds-stren…


btrbetalogo

Jun 16, 2014 

What is Lynch Syndrome and Its Emotional Implications

Lynch syndrome and its emotional implications with Megan Myers, Georgia Hurst and David Dubin.

www.blogtalkradio.com/…/what-is-lynchsyndrome-and-its-emotional-i..


c4l_logo_horiz_new_tag Feb 5, 2013 

Colon Cancer Due to Lynch Syndrome | Chris4Life Colon …

 I, too, have Lynch syndrome but have never had any cancer.

  www.chris4life.org/blog/377/colon-cancer-due-to-lynchsyndrome


outshine_front_cover

Karen Ingalls, Outshine Ovarian Cancer: LYNCH SYNDROME

Jul 10, 2014 – Georgia Hurst states, “I have Lynch syndrome” a deleterious gene mutation…

outshineovariancancer.blogspot.com/2014/07/lynchsyndrome.html


headline 300+ Patient Advocates On Twitter | A Listly List

Georgia Hurst (@shewithlynch).

   

#HereditaryCancerSyndromes

www.ihavelynchsyndrome.org 

list.ly/list/4V0-300-plus-patient-advocates-on-twitter


10403178_1480707378848368_7969566297242118982_nMay 2nd, 2014 Radio: 

THE LITERATE PATIENT. Interview with Joni Aldrich and discussed Lynch syndrome and my  experience with prophylactic surgery.

http://www.W4WN.com

 

Recent Tweets

Genetic Counsel Twitter Topic
My Gene Counsel Web Linked Image
BRC Ad Link

Sponsorships

Counsyl

Partnerships

Chicago Genetics Consultants
Chicago Genetics Consultants