2015 Ohio Genetic Counselor Meeting

A few weeks ago, I attended the 2015 Annual Ohio Genetic Counselors Meeting along with my classmates Kait and Meghann. This was our first genetic counseling conference and we were excited to find out what was discussed and what the event would be like.

The conference was in Columbus and consisted of eight different 30-45 minute presentations. The presentations covered a variety of topics relevant to genetic counseling, including the newest therapies in development for muscular dystrophies, perinatal ethics, and new technology for biopsy free tumor sequencing and how it may impact cancer treatment. While it was a long day of sitting and listening to lectures, the short length of each one and the wide variation in topics kept the meeting engaging.

One thing that I realized while listening to the lectures was how much I understood. I was able to make connections to the patients I’ve seen and clinics I’ve rotated in. Only a year ago I was taking quizzes on medical terminology and just starting to learn how to take pedigrees. I can’t believe how much I have learned and grown in the past year.

During the break for lunch, we sat with a couple of our classmates who graduated last May and have now been working for a few months. This was a great opportunity to learn about the transition from graduate training into working and how that has been for them. We were also able to get advice about the job search process and studying for the board exam. The environment in the lunch room was loud and exciting, as many people had the opportunity to sit and talk with old classmates and colleagues who they had not seen since last year.

After the conference, we were also able to network with the genetic counseling students from Ohio State and Case Western who were also at the meeting. This was a very fun opportunity to learn more about their programs and discuss particularly interesting indications that we’ve gotten to see. 

Overall, I had a lot of fun attending the Ohio Genetic Counselors Meeting. It was a good learning opportunity to find out more about the topics presented and what a conference is like. In addition, I really enjoyed getting to feel part of a larger community of genetic counselors.

--Hayley Grandine, second year student

Marfan Conference 2015

Me (left) and my sister, Madeline

Marfan syndrome, a rare connective tissue disorder, has impacted my life in ways that are both challenging and rewarding. Although I do not have Marfan, my father and younger sister were both diagnosed in 1999. Ultimately, growing up learning and teaching others about Marfan syndrome has allowed me to forge meaning from something that might otherwise be considered a misfortune. By my sophomore year of college, I discovered that genetic counseling is a perfect way to combine my personal experiences and love of science into a career. I am grateful to be involved in a career that can help others with genetic conditions live in a way that is meaningful. 

This year, I accompanied my sister to the Marfan Foundation’s annual family conference in Chicago, IL. The conference is an amazing four day event that includes free medical assessments, workshops, presentations from leading medical experts, and panels where participants can get their questions answered. This year’s conference had two special attendees – Isaiah Austin, the Baylor basketball player who was diagnosed with Marfan syndrome prior to his NBA draft in 2014, and Austin Carlisle, lead singer of the band Of Mice and Men, who also has Marfan syndrome. Having celebrities become involved with the Marfan Foundation has been helpful because the media attention has led to increased awareness and diagnoses that can save lives.

My 5'10" sister, Madeline, and her good friend, Andrea

For many attendees, the Marfan conference is an opportunity to connect with others who face the same challenges. My sister enjoys being around others who look like her and has formed many close friendships over the years. She particularly loves “feeling short” – at 5’10”, my sister is usually one of the tallest girls around, but at the Marfan conference she is below average height!

I attended several Marfan conferences as a teen, but this year was my first time experiencing the conference as an adult and also as a genetic counseling student. As a genetic counselor, I saw the conference through different eyes. I was much more focused on the educational aspects than in the past, although I certainly enjoyed catching up with old friends and meeting new people.

I attended several educational workshops during the conference. Topics of those workshops included genetic testing, heart-related care during pregnancy, staying fit with Marfan syndrome, and family planning options. During the sessions, I witnessed conference attendees share their personal stories about their diagnostic journeys and surgeries and listened to their questions and concerns. All of the information I learned and experiences interacting with conference attendees will be incorporated into sessions with future patients.

Attending an educational conference is invaluable way to obtain insight into what it is like to live with a genetic disorder and the wide variation in peoples’ experiences.  It gives you the opportunity to get to know people who live with a genetic disorder as individuals and friends rather than just a patient, an experience which I believe allows me to better empathize with patients. You will witness firsthand the power of support networks for those living with a genetic disorder. Many national support groups for various genetic conditions host annual conferences and I wholeheartedly recommend attendance for other genetic counseling students or practicing genetic counselors. Even more importantly, be sure to tell your patients about any conference that is offered for their diagnosis and encourage them to attend!

--Hannah Balka, second year student

Attending the AUCD Conference

As a trainee in the Leadership Education in Neurodevelopmental and related Disabilities (LEND) program, I had the opportunity to attend the 2014 Association of University Centers on Disabilities (AUCD) Conference in Washington, DC. As a first time attendee at the AUCD Conference, I was not exactly sure what to expect, but I was excited for the opportunity to expand my knowledge in issues related to disability, policy, and advocacy. I learned a lot from the scheduled events as anticipated, but I didn’t realize how much I would also learn from the diverse group of attendees at the conference.

While at the conference I was able to hear panelists discuss engaging the public in disability issues and the future of education, employment, and community living for people with disabilities. As panelist Emily Ladau stated, “The disability community is talking a lot to itself, but now we need to make disability more accessible to the community.” One method discussed involves making disability more visible and personal to community members. If people are more aware of their own relationships with individuals with disabilities then they will be more invested in disability issues. I found this discussion to be especially interesting because it had many parallels to the awareness that is needed for genetic conditions and related genetics issues in the community. Besides hearing from the panelists, various sessions reiterated to me the importance of genetic counselors communicating and promoting awareness about genetic conditions in the community and to other disciplines. I even gained some ideas for engaging diverse stakeholders to achieve this goal.

Overall, attending the 2014 AUCD Conference was a wonderful opportunity to better understand the current practices and policies that affect the healthcare and well-being of people with disabilities, as well as to learn what disability policy might look like in the future. This conference also inspired me to become more involved in advocating for individuals with disabilities and genetic conditions in the future. A remarkable group of individuals attended the AUCD Conference and I am honored to have been among them.

--Caitlin Campbell, Second Year Student