Musings of a Marfan Mom

December 31, 2022
by marfmom
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Tips for Genetic Counseling Program Applicants

This time last year I’d completed all my applications to genetic counseling programs and was starting to think about interviews. I ultimately applied to 8 programs and interviewed at 7 of them. I didn’t know anyone else who had been through this process since The Match started (I have friends who went to GC school pre-Match), so I really wasn’t sure what to expect. Now that I’ve come out the other side having matched and with a semester of grad school under my belt, I thought I’d blog about the process and include suggestions of questions for you, the applicant, to ask during interviews.

If you’re a disabled student going through this process, shoot me an email or tweet. Let’s talk.

Applying
Part of the match is a numbers game. The first year, I only applied to one program and didn’t get an interview. The second time, like I said, I applied to 8 programs. It’s pricey, but at least interviews are virtual so you’re not having to incur travel costs on top of that. I hope someday the NSGC creates a common app like public health programs have (SOPHAS) to further cut down on application expenses.

Don’t worry if you only get one interview offer: it only takes one to match! But, I think The Match recommends applying to 6-9 programs to have the best chance of matching, and it’s nice to have options if you get multiple interview offers.

The Interview Timeline
My first interview offer came in early January. My last interview offer came towards the end of February. My interviews took place throughout February and March. Some programs mentioned when applicants would hear back by on their website, but a lot didn’t.

Interview Format
Most programs have the interview take place over 2-3 days. Typically, the evening before the interview is a meet and greet with current students, which lasts between 1-2 hours. For some programs this was almost entirely a Q&A. Other programs had us play games, or watch a short presentation. This is less of an interview judging you and more of a great opportunity for you to get an honest feel for the vibe of the program.

Some programs do the information session and faculty interview in one long day (8-3ish). Some split it into two half days. Some programs will assign you a date to interview and others will give you some options. The format of the actual interview can vary widely from school to school. Some have a group interview portion, some don’t. Some ask every interviewee the same questions, and others are more natural conversations, or based on your application. Schools will give you an outline of the format prior to your interview day.

Preparation
When preparing for questions you might be asked, look at basic interview questions online (biggest strength, biggest weakness, time you disagreed with a boss, etc. etc.). You’re not going to be asked to do math, or quizzed on genetics. A doctor friend who interviews med students gave me good advice: think of examples ahead of time that could apply to multiple situations, and jot those down as notes to have during your interview (i.e. – Story A and C can be used for times I showed leadership. C can also be used for working with diverse people, and A for a time I initially failed). That way, you don’t risk drawing a blank during the interview.

I also reached out to recent alumni from the programs I applied to. I found some on the NSGC website (you can search for GCs willing to talk to students) and from LinkedIn. I referenced these conversations in the application and interviews as it made sense to. It showed interest in the program but also provided a spring board for questions I could ask.

DEFINITELY get some friends to do practice interviews with you beforehand. Honest friends, who will tell you that you say “um” too much or fiddled with your pen. If you can set up your computer in such a way that you don’t need a zoom background, do it. I ended up going to a friend’s house for most of my interviews for that reason.

For the day of, I prepared 1-2 sheets of paper for notes. The first section had basic program questions that I expected to be answered during the presentation portion of the interview, and space for me to jot the answers. The second portion had info on each faculty member I would be interviewing with, and 2-3 questions for them (research the faculty ahead of time!). The third portion was a list of other questions that I could pull from as needed. (And remember: you can ask the same questions to different people…they’re not going to know!)

Interview Questions to Ask
You’ll need more questions than you think. Some of these are questions I asked, and some are ones that I’ve since realized would have been useful to have asked. I’ve broken them up by topic. Remember: you’re going to get a great education wherever you end up. You want to ask the questions that will help you find where you think you’ll be happiest! And you’ll hear this again and again: don’t rank schools that you don’t think you’ll be happy at.

General:
What opportunities for reflecting and debriefing are there, including addressing our own biases?

Does your program have an emphasis on one area of genetic counseling? (My current program has a major cancer focus: most of the full-time faculty are cancer GCs, and this impacted thesis topics at our mixer.)

What mentorship opportunities exist, including between cohorts and with alumni?

Are there particular cultural/ethnic groups your area serves? How are students educated on how best to serve these patients?

What opportunities do students have to interact with the community? (For example, some programs have volunteer service requirements.)

How does your program anticipate and keep up with a rapidly changing field?

How do you prepare students for boards? Do you have a comp exam in the second year?

Coursework:
Are classes taken as a cohort, are you mixed in with other disciplines, or a combination?

Do you take any electives, and what are the parameters for those if so?

Do you front load courses (take most or all your first year), or are they spaced throughout the two years?

What are assessments like? (In my program, most are open note and multiple choice, because the boards are multiple choice.)

Thesis:
What % of students come in with a thesis topic vs join an existing project?

Who decides who makes up the thesis committee? Do students ever have people not from your university on their committee?

When faculty present thesis project ideas, are the projects generally from any particular discipline? (My program had almost all cancer topics, which is perfect if cancer is your thing, but some classmates had to find projects on their own.)

Are your students required to do a traditional thesis, a manuscript for publication, or both?

What % of students publish their thesis?

Rotations:
When do rotations begin?

How long are rotations? (My program has 3 week rotations the first semester, then 7 week rotations starting the second semester.)

What kind of subspecialties are available?

What kind of say, if any, do you get in your rotations?

How far in advance do you know your rotation schedule?

What % of students do their summer rotation elsewhere and do you assist with finding those placements?

DEI:
What are you doing to recruit diverse students and faculty?

How do you teach cultural competency, specifically?

What education does your faculty receive on DEIJ issues?

What supports are in place for diverse students, both in the program and in the greater campus community?

For Students:
What is the best part of the program?

If you could change one thing about the program, what would it be?

Do you feel like your interview was an accurate representation of the program? If not, what is different?

Do you have time to have a job? (I knew I wasn’t going to work while in school, but I feel like this question gave me a good idea of how much time students had outside of homework.)

If you have a job, how many hours did you work and how did you find your job? (Thanks to genetic counselor AR for this question!)

Do you feel like your concerns or suggestion are listened to by faculty/program leadership? Any examples?

What do you do for fun?

What are the best and worst parts of your city?

What’s an average day look like for you?

What is rent like? Were you able to find housing close to campus?

What should someone moving to this city know?

What are you doing your thesis on? How has the process been so far?

GC students and GCs: anything I’ve missed?

Applicants: good luck with the process!


September 20, 2021
by marfmom
0 comments

Met Gala 2021 Fashion Critiques

Back by popular demand: my kids (ages 12, 10, 6, and 4) share their opinions on celebrity fashion. For the first time, they’re critiquing the Met Gala. The theme this year was American Independence.

Lupita Nyong’o in Atelier Versace

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M: This is kind of like Elsa’s dress, if Elsa were in 2021.
J: Too much blue.
R: I like her clothes with the sparkles on the bottom. Her hair is good.
E: I like the sparkles! I love them!

Evan Mock in Thom Browne

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M: Fish face. He looks like a Fortnite character.
J: …that one Emo kid.
R: I don’t like him. I don’t like his hair. The mask is creepy.
E: I don’t like the mask. I like the coat. I like the shorts.

Lorde in Bode

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M: I don’t understand fashion.
J: That hat is too much.
R: YES to her dress! And her little crown and her little shoes…they’re all pretty.
E: I like the flowers on her dress, the little and big ones.

Ben Platt in Christian Cowan

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M: The 70s were a dark time.
J: Dear Ben Platt: You in that outfit doesn’t work, just like you playing a high schooler doesn’t work.
R: NOPE! NO. No. Nononononono. That’s all I want to say.
E: I like him’s pants! I like him’s shoes, too!

Naomi Osaka in Louis Vuitton

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M: What creature just walked onto the red carpet?!
J: Like the color, but not the eye shadow.
R: Why is that her hair? It’s all ugly.
E: This looks like a different girl! I like her short dress. I like that hair…the WINGS!

Jordan Roth in Michael Sylvan Robinson

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M: (sings) 24 carat magic on the flooooor…
J: Exquisite.
R: It’s ugly. Too ugly. But I like the boots and pants.
E: The hair is ugly. I like the coat. I like the shoes but not the back of it (the heel).

Emily Blunt in Miu Miu

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M: I like the idea of her dress being made of shooting stars.
J: How long did it take to make that dress?
R: That’s pretty! I like her crown and her earrings and her dress. The sparkly part is my favorite part.
E: I like the crown and the dress and the sparkles but not ALL of the sparkles, just SOME of them. R liked ALL of the sparkles but I just like SOME of them.

Kim Petras in Collina Strada

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M: She’s committed animal cruelty.
J: She. Decapitated. A horse.
R: Good. She’s a horse.
E: A COW! (Me: I think it’s a horse…) A HORSE! I like it. But the hair is a little ugly. Floooooweeeeers! I like flowers. I’m wearing a flower dress today.

Simone Biles in Athleta

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M: There’s the dress, and then there’s…the toilet paper.
J: I swear you are going to kill someone with that dress!
R: It looks like a flower. Really, really good. And it’s pretty.
E: Where’s the crown? I like crowns. But not on the boys. I like the earrings, and the long dress, the white dress.

Dan Levy in Loewe

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M: This makes me feel like I’m going to fail art class in school.
J: Yuck.
R: He’s breaking the rules.
E: Um. What’s he wearing? (I describe.) I like the shoulder pads. But the hair is ugly a little.

Grimes in Iris van Herpen

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M: ….somebody is in your house…Happy Halloween!
J: That mask goes great with it all.
R: She’s like a witch!
E: I like the mask! And the dress. And the hair is good and ugly and gross. I like the sword. That’s all I have to say.

Iman in Harris Reed

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M: IT’S A SUPERNOVA! RUN!
J: The sun god!
R: She’s a PRINCESS!
E: Her looks like a flying dragon! I like her BIG GIANT HAT! Why is it so big and giant? I just don’t know why.

Alexandria Ocasio-Cortez in Brother Vellies by Aurora James

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M: I agree with her statement.
J: I agree.
R: I don’t like it.
E: I like the dress. I like her hair too! Wow this is a lot of persons I’m seeing! When will I be done?

Frank Ocean in Prada

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M: “….do you like my son?”
J: He has a baby.
R: Is that a real baby? Does it talk? I don’t like it. It’s creepy, because witches are green.
E: I like that guy because the robot baby’s so funny! But I don’t like the robot baby. Nooooo….

Erykah Badu in Thom Browne

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M: It’s a gun! No! It’s a sword! NO! IT’S A WEINER DOG!
J: She has a gun.
R: I don’t like the hat.
E: I like the dress and the dog, those two. But the hat is ugly.

Hailee Steinfeld in Iris van Herpen

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M: I’m never eating parmesan cheese crisps again.
J: She has mold.
R: Cute and baaaad.
E: Where’s the cake? There’s no cake in that picture.

Serena Williams in Gucci

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M: The cape reminds me of Art, from Monsters University.
J: WTF (but like, in a good way)
R: Fuzzy. Just fuzzy.
E: I like the cape and the pants and the shoes but the hair’s a little…..no.

Kim Kardashian in Balenciaga Couture

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M: The Grim Reaper is heading your way….
J: Kim = darkness
R: Does she have black skin? (Me: No, she’s pretending). That’s breaking the law!
E: Is this a boy or a girl? I like the mask but….why is her looking at me?

Lil Nas X in Atelier Versace (Part 1)

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M: Well, it would be pretty hard to be cold wearing this.
J: It’s summer, not winter.
R: The coat is SO PRETTY!
E: I like the cape. He looks like a king!

Lil Nas X in Atelier Versace (Part 2)

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M: Go go Power Raaaaangers!
J: Oh look! A knight of the golden table!
R: So he’s a knight? Why did he take off his jacket?
E: It’s good but the shoes are ugly.

Lil Nas X in Atelier Versace (Part 3)

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M: Shiny
J: I got nothin’. I don’t know fashion.
R: A gymnastics clothes? What else is under there? Why was he hiding so much stuff!
E: Him has a lot of suits! I like the shoes NOW. 

Best Dressed:
M: Frank Ocean
J: Kim Petras
R: Simone Biles
E: Grimes

Worst Dressed:
M: Lorde
J: Dan Levy
R: Frank Ocean
E: Ben Platt

June 9, 2021
by marfmom
0 comments

The Hard Truth

Today I’m not ok. Today our community is grieving. Today 3 families are devastated.

On the 1st, I learned of the passing of my friend Steve, from Covid-19. He had Marfan, and we became acquainted online when he asked me to write a quote for his book, Custom Scars. He was a preacher who wanted to share a message of hope with the connective tissue disorder (CTD) community.

On the 7th, my friend Alice’s husband let me know that she had died. Alice was a member of the Marfan chapter in California with me. She babysat my boys. Her daughter was in the teen program with me. Alice was soft-spoken and one of the kindest people you could ever hope to meet.

On the evening of the 8th, we all read on Facebook that Helene had died. Helene was a pillar in the online CTD community. She had Loeys-Dietz syndrome and was so helpful to everyone she came across. You can’t find someone who didn’t love Helene.

When my best friend Sandy died from a dissection, I was 13 years old. My mother called a doctor to ask them how to tell me and what to expect. The doctor counseled her that I would be concerned that *I* would die, that I would be confronting my mortality for the first time. But that wasn’t true. I knew Sandy and I were different medically. What I felt was survivors’ guilt, though I didn’t know the term at the time. And I felt rage. I was SO ANGRY that her family KNEW she may be dissecting and the doctors didn’t believe them.

So, I poured all my idealist 13 year old energy into education. If I could just find a way to educate doctors, what happened to Sandy wouldn’t happen to anyone else. Over the years I’ve become excellent at that. I spend a LOT of time trying to help patients, parents, and medical providers get accurate medical information.

But while my 13 year old self fervently believed that education was the key, that if we just knew to take our medication and get our echoes and have access to knowledgeable doctors we would live long lives, 36 year old me has long since learned the truth: education has its limits.

It makes a good sound bite: “aortic dissection is what kills, so know the signs and follow the guidelines!” However, that forgets the strokes, the heart failure misdiagnosed as pneumonia, the emphysema that slowly robs you of breath, the infections, the surgical complications. To cope, we tell ourselves we have control, but it’s not the truth, or at least not the whole truth. And that, my friends, is depressing.

Loss is the price we pay for being a part of the community. I am grateful every day for the connections I’ve made in the Marfamily, and those relationships sustain me through the hard times. Even though I lose a piece of my heart with every “goodbye, for now,” I would choose that a million times over to the absence of the hellos, Facebook messages, and hugs.

Today I’m not ok. I don’t know if we’re ever truly “ok” after losing someone we love, or maybe our definition of “ok” just changes. But tonight, I’ll dry the tears, put on a dress and some makeup, and I’ll meet friends for my first post-vaccine dinner out: Foundation staff, fellow Marfs, and doctors.

Today many of you aren’t ok, but we’ll figure out our new definition together.

Steve, Alice, Helene, Sandy, and so many others: we love you. Thank you for sharing your lives with us.

A heart collage of many pictures of the Marfan and related conditions community
Some of these friends have died, but they will always be a piece of our hearts.