Tuberous Sclerosis Complex Clinic (TSC)

At the University of Iowa, a multidisciplinary TSC clinic was formed in 2018. The shared clinic includes pediatric genetics (Dr. Sidhu) and genetic counseling, pediatric neurology/epilepsy (Dr. Ciliberto), and pediatric nephrology (Dr. Harshman). The purpose of this clinic is to provide coordinated, comprehensive care in parallel with guidelines from the TSC Alliance.

Tuberous sclerosis complex (TSC) is an autosomal dominant genetic disorder effecting 1 in 5000-10000 live births. TSC is known for the potential to cause severe neurologic manifestations such as intellectual and learning disabilities, epilepsy, and hydrocephalus. However, TSC is a multi-system disorder that can affect most organ systems including the skin, kidneys, lungs, and heart.

Because this disease has such a broad range of signs and symptoms, across the country, it has become the standard of care for academic institutions to develop multidisciplinary clinics for patients with this disease to provide comprehensive care in an efficient, caring, and multigenerational manner. Often, multiple family members are affected and benefit from comprehensive, family-centered care in a focused clinic.

This quarterly clinic currently serves approximately 50 pediatric patients with TSC. For questions about this clinic or information on how to refer a patient for comprehensive TSC care, please contact 319-356-8427 or email liberty-taeger@uiowa.edu.

Staff Spotlight – Samuel Wong, DO, MS

Dr. Wong is Clinical Assistant Professor in the Division of Neonatology.

I joined UI healthcare recently in July. I work in the Division of Neonatology. I provide clinical care in the NICU. My academic and scholarly focus will be two areas: 1) assisting the development of our Neonatal-Pediatric Transport program and 2) the development of new tools and utilization of the big data streams collected through Sickbay to improve our delivery of care in the NICU.

I am married. My wife is a nurse, I met her through my primary care clinic during residency. She is a ninja at delivering vaccines to kids. We have a 1 year old son named Emory. He is learning to express himself and is a handful of adorable energy.

I like nature, food and travel documentaries. I am always looking to learn new cooking techniques and incorporate them into new recipes. My current food projects are developing a mean deep dish pizza dough and perfecting a nappa cabbage kimchi. Long term goals are to grow a full-sized watermelon, catch a trout on a dry-fly, and successfully smoke a whole brisket.

My guilty pleasure is Arby’s fast food. I really enjoy fountain Coca-Cola. I will not drink Pepsi.

I enjoy supporting my favorite soccer team, Arsenal, in their quest to win the English Premiere League and Champions League Tournament.

Fun fact: I was a former MN elementary state chess co-champion.

Staff Spotlight – Rabia Khan, MD

Dr. Rabia Khan is a new Clinical Assistant Professor in the Division of Cardiology.

I am a Heart Failure and Heart Transplant Specialist in the Division of Cardiology. This is my first position in UI Healthcare, and I started two weeks ago.

My husband and I have five year old boy-girl twins who will be starting kindergarten this year. We also have an eight year old orange tabby cat named Dori.

I am a singer and songwriter, mostly in my family’s native language of Urdu. I also enjoy reading to my children, writing fiction, and traveling.

My dream job? I would say this is it! The opportunities to interact with children all day, give some of those children a new lease on life through heart failure management, continuously learn from some of the brightest minds in the field, participate in the advancement of the field through research, and play a role in educating future generations of physicians – I couldn’t ask for more.

Favorite place to live or visit? We visited Barcelona for a short three day trip last year, and I was captivated by the fascinating architecture, diversity, and the unique energy of the city. I can’t wait to go back some day!

Favorite food? Nothing tops my mom’s amazing shrimp biryani.

Favorite sports team? I don’t have one at the moment, but I was a big San Antonio Spurs fan when the Big Three were around.

Favorite book or movie? It is impossible to name one, but some of my favorite books include Pride and Prejudice, Midnight’s Children, To Kill a Mockingbird, The Crucible, The Phantom Tollbooth, and the Harry Potter series.

Fun fact: I grew up on both coasts, New York/New Jersey for the first five years of my life and Northern California for the remainder of my childhood, but unexpectedly ended up completing all my medical training in the Midwest (at three different institutions). And now, having started this job at UI, I suppose I can officially call the Midwest home.

I am so excited to be here, and I look forward to getting to know everyone.

Staff Spotlight – Mendi Schmelzel, MSN-RN, RNC-NIC

Mendi is a Clinical Research Nurse Coordinator for the Division of Neonatology.

I operationalize research protocols in the NICU and collaborating departments. I graduated from the University of Iowa with my BSN in 2003. During nursing school I worked as a Nursing Assistant in the Burn Unit. After college I pursued a career in Neonatology. I worked as a Staff Nurse in 5 different Neonatal Intensive Care Units throughout the country. I graduated from my Master of Nursing Education Program in 2017 and delightfully stumbled across an open position for a Research Coordinator in Neonatology… a perfect fit.

Part of my job includes being an active member of the Iowa Neonatal Clinical Research Committee (INCRC). I am very proud to be a member of this multi-disciplinary committee that advocates for infants and their families by supporting investigators to conduct research in the NICU. If someone is interested in conducting research in the NICU please start the process by completing the following survey https://is.gd/incrcapplication.

I was born at Mercy here in Iowa City then grew up in Bettendorf, IA. After college I lived in Ankeny, IA; Tucson, AZ; Plainfield IL; and now back to Iowa City, IA. My husband, of 15 years, and I enjoy traveling, trying new restaurants, and outdoor activities with our one and only fur-baby Izzy.

I have enjoyed a yoga practice for many years, sprinkling in all varieties. My current fav is stand up paddle board (SUP) yoga and getting a headstand in on the board! I won’t lie it is challenging.

Favorite restaurant? In town currently Goose Town. The one I miss the most Wild Tuna in Naperville, IL.

Fun fact: I spent 6 days on the USNS Comfort with Operation Smile- we completed 25 surgeries a day for 5 days. The experience and smiles were unforgettable!

Staff Spotlight – Maeve Jackowski Price, SPHR

Maeve in an HR Generalist in Pediatrics Human Resources.

I graduated from the University of Iowa in 2010 and have been working in Human Resources for 8+ years. I have worked in Peds HR for over 4 years, I am currently an HR Generalist and HR Rep for University of Iowa Stead Family Children’s Hospital!

I was born in Michigan but moved to Des Moines when I was little. I now live in Coralville with my husband, dog and two cats. My family is scattered around the USA, with my younger sister and mom both living in Washington D.C., a place I love to visit!

I spend most of my time being with family and friends (pre COVID). I enjoy watching good tv (and talking about it). I also love to cook and try out new recipes and wine pairings. Reading/supporting and being informed about politics, social justice issues and current events takes up a lot of my time as well. However, traveling is my true passion and planning trips is one of my favorite things to do.

My dream job would be something involving travel and food. Basically, I would love to get paid to eat and visit new places.

The most fascinating place I ever visited was the Andalusia region in Southern Spain. It’s a very culturally eclectic place with seriously delicious food and the warmest people. If you every have the opportunity to visit – go there!

My husband is huge Green Bay Packers fan, our dog is named Lambeau! I don’t necessarily love watching football but I enjoy tailgating and goading my Detroit Lions/Chicago Bears family members.

I am sad to report I cannot think of one fun fact about myself.

Staff Spotlight – Karen Johnson, RN, BSN

Karen is a Clinical Research Manager in the NICU.

I’ve worked at UI Healthcare since May 1984, shortly after I graduated from the University of Iowa Nursing program. I worked 3 years in the “Intermediate Care Nursery”. Dr. Ed Bell hired me in 1987 to be the first and at the time, only NICU research nurse. Since then, our program has grown to a team of four.

When I was a little girl, my grandmother gave me a book titled “nurse Nancy”. The book included a real band-aid, which I thought was super cool. From that point on, I wanted to be a nurse and here I am!

One of the greatest satisfactions in my career has been the creation of the Iowa Neonatal Clinical Research Committee (INCRC), an interdisciplinary team that provides scientific and feasibility guidance for investigators who would like to conduct research within the NICU.

I have been married to my husband, Don for 45 years. We have 3 daughters and 2 grandchildren.

I always have a good book to read and love gardening, cooking and spending time with my family. I have run two half marathons, so jokingly claim that I’ve run a whole.I also love to golf and am a member of the Brown Deer Women’s Golf League.

I am fascinated with the Rocky Mountains every time I go there. Besides the awesomeness of the mountains, the air is pure, the sky is amazing and it is where I find myself most relaxed.

My favorite restaurant is Monica’s. We’ve been regular customers since it was “Bob’s Your Uncle” and our daughter worked there as a server.

My favorite book of all time is The Thorn Birds, which was also made into a great movie!

If I had 3 wishes they would be: 1. We could get through COVID-19 so I can have my grandkids here again. 2. Continued good health. 3. That all of my kids and their families live close enough to see them often.

Fun fact: I spent a lot of my childhood in Kansas and used to hope that they would someday re-make The Wizard of Oz, starring me as Dorothy.

Staff Spotlight – Julie Osterhaus, MA, ARNP, CPNP

Julie is an ARNP in the Division of Endocrinology and Diabetes.

I staff clinics at IRL, CR Outreach, and SFCH. Started here in 1987, first as staff nurse in PICU, then as Nurse Manager in Pediatric Outpatient Clinic (when primary and specialty care were run out of the same space!) and now as Nurse Practitioner in Pediatric Endocrinology and Diabetes.

I have always wanted a career in Pediatrics, so am right where I want to be.

I have benn married to my husband, John for almost 37 years. 2 children – Samantha (age 28) lives in Minneapolis; son Ben (age 25) lives in Des Moines. No grandchildren, but a grand-dog named Huck.

In the summer, like to boat and water ski and tend to herb garden. In the fall, attend Iowa Hawkeye football gams (long time season ticket holder). Also like to read and grow (or to be honest “not kill”) succulents. Enjoy walking and hanging out with friends. Starting to enjoy cooking more when I have time.

Favorite place to visit? LOVE LOVE Table Rock Lake in SW Missouri for annual boating vacations. Visited Hawaii several years ago and would like to go back. Also liked Aruba.

Favorite book or movie? Favorite book – An American Marriage by Tayari Jones; Favorite Movie – Footloose (for the music and dancing!).

If I had 3 wishes, they would be 1. For my children to be happy, healthy, and doing what they want to do 2. For good health 3. To strengthen my relationships with family and friends.

Fun fact: I am addicted to true crime shows on TV.

Staff Spotlight – Natalie Van Waning, MSN, ARNP, CPNP-PC

Natalie is an ARNP in the Division of Cardiology.

I graduated from Iowa College of Nursing in 98 with my BSN and started in the PICU January 99. Returned to grad school and graduated with MSN- PNP primary care degree in 2004. January 2005 started in Pediatric Cardiology. I currently have clinic three days a week where I assess patients for events of syncope or autonomic dysfunction (orthostatic hypotension, POTS, and orthostatic intolerance) along with ruling out cardiac dysrhythmia or congenital heart defects as cause for their symptoms. Twice a month myself, Erin Olufs, PhD, pediatric psychologist, and exercise physiologists from our division run a multidisciplinary syncope clinic.

I’ve been married for 20 years to Matt, a CPA who works in audit group at RSM (Cedar Rapids and Iowa City offices). I have a son who will be a sophomore in high school and a daughter who will be in 7th grade fall 2020. Both kids are active in multiple sports, and play musical instruments.

Reading is at the top of my hobby list. I review books sent to my by publishers and posts reviews on my blog and Instagram/face book account. I’m in a book club that recently celebrated their 17th anniversary. I used to run marathons and do triathlons, but due to injury currently now spends a lot of time walking the great paths in Coralville, North Liberty and Iowa City.

My dream job would be a Librarian- I love to read and love to talk to people about books.

Most fascinating place I’ve ever visited? Paris, France with my son who was 12 years of age at the time. We took a day trip to Normandy and loved seeing Utah Beach, Omaha Beach and Ponte Du Hoc- love WWII history.

Favorite meal or restaurant? Pizza. Giordano’s Deep Dish Pepperoni, or Wig N Pen “Flying Tomato” pepperoni.

Favorite sports team? Michigan Wolverines.

Favorite book? Beach Music by Pat Conroy

Fun fact: I’ve run 5 Chicago Marathons, and completed an 1/2 Ironman.

Staff Spotlight – Anna Spykerman, DNP, ARNP

Anna is an ARNP in Pediatric Hematology/Oncology.

I work in Pediatric Hematology/Oncology and Bone Marrow Transplant as an inpatient nurse practitioner. I started working here in January 2020.

I am an only child who grew up in Southern California with my mom and dad. We have always been an adventurous family, and I used to drive 11 hours round trip every weekend to competitively snowboard. My parents moved to a lake in South Carolina, which I love to visit.

I’ve lived in Southern California, South Carolina, New York City, and now Iowa City. That being said, I think my 4 months studying abroad would qualify as the most fascinating. We traveled to a new country every weekend and were immersed in new culture every day. It was incredible.

In my free time, I spend as much time outside as possible. I have a balcony garden that is thriving and love to ride my bike, travel, eat new foods, and see Broadway shows.

I have my dream job! I moved here from New York because I knew that I wanted to work in Pediatric Hematology/Oncology. I’m living the dream!

My favorite restaurant is an “Indian version of Chipotle” in New York City called “Deep Indian Kitchen”. They had the best paneer tikka masala in the world and I miss it.

My favorite team is the Los Angeles Dodgers! I miss baseball…

Favorite book or movie? I am a huge Harry Potter nerd. I throw a Harry Potter party every October with themed decorations and food!

If I had three wishes they would be: 1. A cure for cancer and sickle cell disease 2. Money to pay off my student loans 3. More time. I want more time to travel, spend time with friends, and visit my family.

Fun fact: I competitively snowboarded all through high school.

Staff Spotlight – Rae Miller, BGS, RN, Program Manager

Rae is a Program Manager at the Child Health Specialty Clinic in Carroll, IA.

I am in the Division of Child and Community Health in the Child Health Specialty Clinic in Carroll. I supervise the CHSC Carroll Regional Center and also supervise and provide leadership for our Early ACCESS Service Coordinators who are in CHSC offices throughout the state. I have worked this time for over 12 years. I worked at UIHC on 5 Boyd Tower on a pre op-post off cancer unit in the very early 80’s for a couple of years before I got married.

I met my husband on a blind date following a Hawkeye football game. We farm on “the home place” near Fonda. We have been blessed with 3 kids, our 1st son lived 16 weeks following his premature birth and them we were lucky enough to adopt a daughter and a son.

I’m trying to figure out what I like to do as I am retiring on August 10th! I like computer games and we golf. Love audio books too, and our grand dog.

I always wanted to work in a Hallmark store as I figured no one dies if you help someone pick the wrong card.

Most fascinating place I’ve ever visited? Not sure they are fascinating but love the fun of New Orleans and Nashville.

Favorite meal? My homemade meatloaf or anything with pasta in it.

Favorite book or movie? I liked reading “It” by Stephen King but couldn’t watch the move. “Monsters Inc.”, is my favorite movie.

If I had 3 wishes, they would be 1. Kindness and employment for people who dance to a different beat. 2. Consistently better golf game. 3. A cure for cancer.

Fun fact: I finished my Bachelors degree at the ripe old age of 53.