For those living under a rock, Owen and I were in Nashville a couple weeks ago, for
the annual American College of Medical Genetics Conference. YEEHAW!
a.k.a. A vacation. So nerdy right? A week of genetics, and consumer engagement,
and we count it as vacation. Well, I can’t remember the last time I traveled
anywhere for almost 7 days, I took time off, and figured we might as well make the most of it!
And we did! I didn’t have high expectations, because it was a genetics conference,
but it really turned out to be the perfect balance of “work hard, play hard,” which I
feel like I am only now beginning to master at conferences!
attending. The last couple of years, have been spent flitting in and out to present,
listening to the same old workshops, that I could basically recite in my sleep. While
I love presenting, and we did present at this conference as well, it was so refreshing
to LEARN! We learned, we laughed until it hurt, we thought until it hurt, and we made friends!
One of the things I realized contributed to what I got out of this event, and probably
what I gave as well was that, for the first time in many years, I felt like I was there
as ME. For the first time, I introduced myself at a meeting with all of my roles- a
student, a LEND fellow, my day job, a consultant on a national center, a program
coordinator for Next Step, and a young adult living with a genetic condition.
And at that moment, I felt this sort of weight be lifted from my shoulders for the
I can’t really explain it, except it was just liberating! Being able to share my thoughts
without worrying about “representing” anyone, even though I was representing
everyone- I was invited as a consumer, and they wanted me there for ME.
The first day, we attended a meeting of the national transition work group, which is
comprised of the people all over the country doing the REAL work for young people
with genetic conditions who are in the process of transition. It was the best meeting
I think I have ever participated in. The time was well managed, everyone was
acknowledged and respected, ideas were shared, and we left with action steps for a
national project that stemmed from our ideas! ….a potential practicum, hmmm… It
was just dynamic.
The next day I had a long day in a meeting for the regional genetics advisory I’m on,
reviewing mini grant proposals (love, love love, such a geek) Then we presented on
panel for a “Community Conversation,” with some incredible providers who have
done great work in transition and positive youth development. We talked about the
impact of programs like Face Forward, and our own experiences just living the life.
Some of the questions got pretty intense, but I love it. This conference was a collage
of all the things that I DO love about this work, as messy as it can be.
One thing that I think neither of us really expected from this event was how
“affected” we felt by the whole thing. Genetics is really emotional shit. Ethically,
spiritually, economically, just. There was a lot of processing and napping.
And the exhibit hall. First of all, this is a conference for providers. And Companies.
Which means serious budgets for ridiculous exhibits.
Owen and I walked in and realized we had just stepped from District 12 into the
Capitol. There is no other way to describe it.
All of these booths advertising products, and methods, and tests… to prevent
“errors.” “Mutations.” “Tragedies.”
I know, I know… it is not mal-intended at all, and these people were kind, and many
of them spoke to us, and some really took the time to teach about different screening
processes and I learned a lot. But something I found really interesting was the
initial question we got was when we were browsing exhibits and networking was
“Do you work in a lab?” or “Are you a genetic counselor?” which I thought was
funny, because we felt like we stuck out like a couple of sore thumbs at risk for
possible elimination if we weren’t too careful, but everyone else just knew we had a
reason to be there. It was like odd, reverse role assumption….
But I just responded confidently “No, we’re in the consumer leader’s program, trying
to learn all we can to better advocate on behalf of youth and families living with
But I sort of wanted to say, “haha, actually, we’re what you’re trying to avoid… “
Super awkward right?
SO MANY FEELS.
Nobody wants to sit here and read how I feel about all the issues of genetic testing,
newborn screening, and the ethics behind reproductive “technology,” and frankly, I
am still sorting through it all, and figuring out HOW I feel about it. Perhaps it is one
of those things I will never really know. I do know that I was a strong advocate of
recognizing that for many people living with genetic conditions, it is about quality
of life, not finding a cure, and that needs to be recognized. An advance in medical
treatment may not be the best answer for all people. I’m a fan of technology and
scientific advancements, but I will not sit home refreshing the interwebz waiting for
a cure, or something that might remove my disease but sacrifice my quality of life.
Mama’s got shit to do.
The other time my mind was a tiny bit blown was when I attended a session about
pregnancy for women with skeletal conditions. It wasn’t until the presenter
mentioned my bone condition, which I totally forgot even had a name, because
nobody knows about it (except, upon further research, Danny Devito has it as
well- DANNY DEVITO, I LOVE YOUR WORK) that I was like “oh man, this just got
relevant.” At all the events where I feel like I don’t have a “group,” I realized…
perhaps… this is my group!!! And I felt that way all week!
I may or may not be plotting a poster abstract about MID (Microvillous Inclusion
Disease) and the research that is currently being done, just to get our name on the
Aside from that. Here are some more lighthearted things I learned on my
GeneticsCation in Nashville:
• Tomatoes are just better green and fried.
• Smokey whiskey bloody marys. Yup.
• Line dancing should happen whenever possible.
• South does not = warmer weather.
• I’m obsessed with the Omni Nashville hotel, and will be returning to use the
roof top infinity pool (check out my full review here)
• There is a laid back country girl in this complicated Gemini who felt at peace
and relaxed for the first time in a long time.
• I know more than I think I do. Someone said to me at the conference- “You
know, you are really smart.” And it was nice to hear. Sometimes I just feel
tired and defeated…
• Genetic Screening companies have sweet conference swag! Tote bags that
zip? Plastic sperms? G-gnomes. Hook me up.
And the final thing I learned after a week in Nashville was that Owen rocks, and we are an amazing team. We had such an incredible week- as colleagues, as best friends, as partners. Sharing
our story in different settings, both networking for our own paths, learning about
country music (me getting’ schooled)… and being able to process all of this together.
Truthfully, had I gone to this event by myself, I probably just would have sat in the
hotel staring straight ahead, feeling completely overwhelmed. But with each other,
we were able to strike a balance, and know when it was time to step away and have
some fun, and when we needed to debrief.
It was just awesome. Nashville, and the genetics world. You have not seen the last