Diving Deep with Patient Advocates

I’ve been a certified genetic counselor for over 20 years, working in pediatrics, general genetics, cancer genetics, and now as the CEO of my own company, My Gene Counsel. I have counseled thousands of patients and their families over these two decades, have run patient support groups, and have created and produced a podcast of patient stories. At this point in my career I’m considered a seasoned genetic counselor. At this point, shouldn’t I know everything there is to know about patients?   No. I continue to be reminded that… more...

Living With Lynch syndrome: The Emotional Rollercoaster by Guest Blogger Kristen Lummis

Living With Lynch syndrome It was just about a year ago that I started going crazy. Ten months out from a devastating cancer diagnosis and a subsequent Lynch syndrome diagnosis, I’d been holding pretty steady. At one point, in the first months after my surgeries, flush with hope and my oncologist’s report of NED (no evidence of disease), I was heard to say: “cancer has made me a better person. I put on the best face possible. I told myself I wasn’t bitter. I told myself that I needed to be… more...

A Summary from Dana Farber’s LYNKED IN Conference: Connecting and Empowering Lynch Syndrome Families 2017

The Dana-Farber’s Center for Cancer Genetics and Prevention in Boston just held their second annual LYNKED IN conference on March 18th. The stated goal of the conference is to provide information to patients, as well as their families and caregivers. This was my first experience attending anything pertaining to the Lynch community. I follow Georgia’s website — ihavelynchsyndrome.org — and social media regularly, so I feel like I have an online presence in the community, but I wanted to take the time to actively engage and perhaps… more...

Lynch Syndrome Awareness Day 2017 and Hereditary Colon Cancer Syndromes

Colon Cancer Awareness Month and the Genetics of Inherited Colorectal Cancer In 2000, President Clinton signed a White House Proclamation that March be designated Colon Cancer Awareness Month to bring attention to the second leading cause of cancer death in the United States. Each year, those who have been affected by colon cancer, their caregivers, and advocates come together to celebrate and honor people who have battled colon cancer, increase awareness, and educate the wider community about colon cancer screening and prevention. This Friday, March 3rd, 2017, celebrate… more...

NCI: Lynch Syndrome Workshop and Shining Light on Cowden Syndrome

  Approaches to Blue Ribbon Panel Recommendations: The Case of Lynch Syndrome The National Cancer Institute (NCI) is convening a Workshop on February 22–23, 2017, in Rockville, Maryland, to discuss issues related to cancer genetic testing approaches, current practices, and resources for case and family ascertainment in hereditary cancers, using Lynch syndrome as an example. Lynch syndrome is a genetically inherited disorder that increases the risk of colorectal and endometrial cancers and several other malignancies. It is estimated that in the United States, up to 1 million people live with… more...

Hot Careers: Become a Certified Genetic Counselor!

Do you like genetics and working with patients? Do you want to be a genetic counselor? Are you interested in learning more about the field? These are a few of the first things individuals interested in the career often think about. The second is often figuring out how to get a starting foot into the process. Either way, genetic counseling is an exciting field that is rewarding in many ways. What is certified genetic counseling? The National Society of Genetic Counselors defines the “professional as having specialized education in… more...

Guardian of the Genome: An Overview of Li-Fraumeni Syndrome

Li-Fraumeni syndrome When I was initially diagnosed with Lynch syndrome, I became highly interested in other hereditary cancer syndromes and wanted to learn as much about them as I could. Reading about them gave me tremendous perspective. The more I read, the more I recognized the parallels between them … there may be some different cancer manifestations of these syndromes but for the most part the emotional gravity of having a hereditary cancer syndrome is the same. -Georgia You may be familiar with the BRCA genes and Lynch syndrome, but… more...

Thanksgiving is National Family Health History Day!

  Thanksgiving is National Family Health History Day! With the holiday season fast approaching in the US, many of us are looking forward to celebrating by spending quality time with family. But besides enjoying turkey dinners and holiday sales, did you also know that Thanksgiving is a great time to gather a family health history? In 2004, the U.S. Surgeon General declared Thanksgiving as National Family Health History Day. This information is very useful for your health care providers to know what medical conditions you may be at risk… more...

What is PGD? How Can It Help Those with Lynch syndrome?

What is Preimplantation Genetic Diagnosis and How Can It Help Those with Lynch syndrome?  Preimplantation genetic diagnosis (PGD) was introduced in 1990 and has provided a way to screen embryos for genetic conditions, chromosomal abnormalities, and mitochondrial disorders. This method enables couples to perform an embryo genetic analysis before transferring the embryo to the uterus during an in vitro fertilization (IVF) cycle. Before the introduction of PGD, the only option available to couples with a hereditary genetic condition was to naturally conceive and then perform prenatal testing, such… more...

Women with Lynch syndrome: Graduate Research Study

Women with Lynch syndrome — Graduate Research Study Patient advocacy is, among other things, the provision of information and support to empower patients to confidently take control of their health. While patient advocacy exists in all facets of healthcare, it is especially crucial the realm of hereditary cancer syndromes, where targeted patient education can save lives. Therefore, in order to be the best possible patient advocate, it is extremely important that healthcare providers are meeting the informational needs of this unique population. There is a lot of information… more...

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