March 28, 2023

In this Science MINDS, UC Davis MIND Institute Medical Director and world-renowned fragile X expert Randi Hagerman discusses her research, the struggle for work-life balance, the connection between science and art and the importance of building solid relationships with patients.

So welcome to science minds i’m andy decapolis and i’m very pleased to be joined by dr rondi hogerman today so thank you so much for being here it’s my great pleasure yeah so we’ll jump into things we’ll talk about the science in a little bit which i’m very interested to chat with you about but um on a more personal level you know you’re just you’re such a huge

Person in the field of developmental disabilities in the field of fragile x but i’d love to hear a little bit about just sort of who is randy hogerman away from the science what do you like to do in your free time what do you like to you know what are your hobbies like who are you outside of the mind institute in your practice sure um well i am a workaholic so

My work i spent a lot of time on my work but um i spent a lot of time with my kids and now i have four grandchildren okay oris nuna uh jenna and avery um but two of them live in louisville colorado and two live in tennessee in knoxville so we travel a lot to the grandchildren to spend time and encourage them to come out to california and you know partake of

Our swimming pool and i love to do arts and crafts with the grandchildren i love to do eco-dying do you know what that is okay so it’s using plants okay from the environment uh to dye scars and other types of clothing okay and um i make beautiful eco-dive scarves i like to also do shiburi do you know what shiburi is i’ve heard of it i’m not too familiar okay

It’s where you fold like this could be shiburi you fold the cloth and then you wrap it with a string and then you dye it and i do tie-dye or indigo dyeing you dye it and it makes a beautiful designs so i like to do scarves and clothes with shiburi tie-dye or eco-dyne i love to make fabrics and you know i do this with the grandchildren whenever possible but also

I have two daughters uh karen and hillary so i do it with my daughters too that’s awesome where do you get the where do you get the plants where do you get the material my neighborhood okay there’s certain eucalyptus trees in davis that give beautiful red and orange colors so i you know take little clippings from the neighborhood and uh from my own garden i grow

Different plants that i think would be great yeah and then if i’m using regular um dyes i order it usually from dharma trading company so online you can order different dyes too but the eco dine i take from uh my neighborhood so um things like turmeric i can buy at the store and that makes great yellow red actually purple carrots i get at the davis farmers market

And that makes beautiful purple colors the eucalyptus eucalyptus leaves are great also i grow a lot of roses so rose leaves are good a variety of plants from my garden yeah that’s awesome one thing that really interests me and this has come up in some of my other interviews with other scientists is this connection between art and science yes finding that a lot

Of scientists are actually very interested in art and excellent artists and i’d love to hear a little bit about maybe if you see a connection creative art makes you more creative in your science endeavors my husband paul is a molecular biologist but when um he does art and i usually force him to do art he makes really interesting and very different types of art

You know related to his science too and also the neuropathologist oftentimes the stains you know of um looking at neuropathology and inclusions and neuronal connections are really beautiful so i would love to get that on fabric but i i think there’s a very close connection between art and science yeah i think that there’s a way that it kind of can open your mind

Absolutely thinking about things from a difference a different perspective absolutely i totally agree for sure that’s awesome another thing i’m interested in you know you mentioned that you’re a workaholic i noticed you in your office all the time but i’m interested to hear sort of what your perspective is on like work-life balance and sure giving time for work i

Thought of that throughout my career that’s what i do uh is try to get a good work-life balance so let me say that you never achieve an optimal work life balance and it also changes through the ages so when your kids are little the emphasis should be on family because those times go very fast okay so if there’s a priority it’s definitely family and after the kids

Are off doing their own thing then the emphasis can be on work but there’s always you know the tension for work-life balance and you never achieve a perfect work-life balance i know i’ve been trying to achieve that for my whole career and i realize that you can never achieve an optimal work-life balance it’s all it’s always a push and pull and depending on what

Factors like if your kids are sick then it shifts to kids you know if there’s a grant due it can shift to work for a little while but it always shifts back and forth depending on what stage you are in life yeah and your stage it needs to be for the kids yeah for sure and i think um i mean it’s really nice to hear to hear that um you know you get advice from all

Different academics at least at this stage in my career um you know just focus on your family focus on you know focus on papers focus on writing and it’s really hard to find the right balance um somebody said in a in a group session a few months ago they said you know everybody gives a hundred percent there’s something to this extent of everybody gives 100 percent

But if you want to be successful in this field in academia you need to be competing with the people who give 150 percent um and you have to be willing to give that to be successful in this field and i’d really love you know to hear your perspective on kind of that sentiment especially like thinking about how do you move ahead and achieve at really high levels like

You have but also give time to family give time to children those kinds of things yeah yeah well there are times when you give 200 percent you know after the kids are asleep that’s when i uh focus on work um but i think when the kids are young you have to spend those evenings before they go to sleep with them reading stories playing games interacting you have to

Be there for them and and my best memories are from my kids and my grandchildren those are my best memories my best memories are not necessarily from work um you know what drives me in work is also what the patients need so the important thing in life from my perspective is relationships so relationships not only within your family but also for me relationships

With my patients so oftentimes there can be a great need in terms of the patient’s need and you know since the advent of email i spend a lot of time on email answering questions taking care of patients by email in addition to in person it’s trying to help the families that’s what drives me it’s not necessarily the science and the big achievement it’s when you treat

Families and find something better for families the achievements are secondary you know and i know that um what i love about research is that you know when you find something that’s helpful for one family uh that’s one family that you help but when you do research and write a paper about something it’s international families that make a difference uh that you make

A difference for for instance i was in the jungles of brazil and the family came up to me and said and they had very poor english but they held up a book that i published years ago and they said half of the book was on treatment of fragile x syndrome and they said this book has made all the difference for us and i realized that writing a book or writing a paper

Influences families all over the world yeah and that’s very powerful i mean i love influencing just the family that i see in clinic but when you can multiply that by millions and help people around the world and we do such great research at the mind i think it’s really important to get that information out to the rest of the world you know you don’t want to keep

It in you want to share for everybody to do and you want to encourage more people to be in the fragilex field and the research view field because that’s what makes advances that help the families yeah that’s what’s so inspiring to me about sort of your perspective as a clinician kind of a clinician first absolutely and being able to just keep that perspective of

Family first and let the let the families let the people drive the science absolutely in fact i know i don’t know how researchers can get new ideas because it’s the families that teach me everything the families the mothers whose children i see with fragile x syndrome those mothers are the ones that talk to me about their fathers who are having problems and that’s

How we discovered facts tests is because i was willing to listen to the mothers mothers know all mothers i have such great respect for mothers of kids with fragile x kids with the premutation kids with autism kids with other neurodevelopmental disorders they are so strong and they do so much but they tell you they give you insights about other family members about

The phenotype of the kids you know you learn everything from the family yeah that’s amazing what do you think you know you’ve been around in the field for a while what do you think is particularly special or unique about this point in time doing science now well doing science now there’s so many new advances you know new advances in for instance a quantitative

Outcome measures mri studies dti pet scanning all kinds of things but so many advances in genetics and thinking about how mutations in one disorder influence the protein expressions you know when a when a protein isn’t there like when the fmr1 protein isn’t there it dysregulates many pathways it controls about 30 percent of all the genes that were mutated cause

Autism so because fmrp is a regulator of so many things including translation but also aspects of transcription epigenetic genetic stuff that when that protein is not there many of the pathways that are disrupted link up with other disorders so that if we find a targeted treatment for fragile x it might be helpful for many other disorders like the targeted treatment

Metformin for fragile x might also be helpful for premutation carriers maybe subgroups of individuals with autism um and the animal models have really advanced treatment uh at this time but also we are on the verge of gene therapy gene therapy is going to change the whole face of medicine particularly genetics you know when there’s mutations if we can you know

Put the normal protein back with uh gene therapy or put the normal gene back or calm down the excess messenger rna with oligos i mean there’s so many things that we may be able to improve with gene therapy or stem cell therapy it’s really a very exciting time looking back over your career what advice would you give to your former self your younger self um you know

Thinking about choices you’ve made or things that you’ve done or the way that you’ve approached your career what advice would you give to yourself i think i would spend even more time with the children when they’re young and take even more pictures and more videos i don’t have enough and i should i knew i had to do a lot but i think i would do even more even more

And i you know i love working with people uh trainees and getting them into medicine and talking about the importance of the relationship and the more you give in medicine and in family interactions the more you get back and that’s true of everything in life and so being tolerant and giving more and being more supportive and being positive i think that’s the very

Special thing in life well it’s been absolutely wonderful to chat with you a little bit and thank you so much for your your insight and your um all all that you contributed to the field um it’s just been a pleasure the uc davis mind institute was founded in 1998 with a promise to reduce and prevent the disabilities that can be associated with autism and other

Neurodevelopmental conditions every day our clinicians and researchers make progress on that promise our groundbreaking research on autism fragile x syndrome chromosome 22q11.2 deletion syndrome adhd and other conditions associated with disability are helping affected individuals achieve their fullest potential please visit our website or our social media platforms

To find out more about current studies upcoming events and how you can help make a difference

Transcribed from video
Science MINDS: UC Davis MIND Institute Medical Director Randi Hagerman By UC Davis MIND Institute