How did you end up where you are now in terms of your job, or whatever passion project it is you might be doing? I have worked as a financial advisor for over 15 years. Once Parker (our oldest daughter) was born and our lives changed forever, I realized in order to continue to do what I love I also needed/wanted to feel like I was honoring her in some way. I went back to get my Chartered Special Needs Consultant Certification so I could help other families plan for their financial futures while caring for a child with special needs. I recently moved to Morgan Stanley where I have received so much support for this initiative.
Parker was born with a very rare genetic syndrome call HIST1H1E. When she received her diagnosis she was only the 8th person in the world to have it, and as a result, there was no research available at the time. I joined a Facebook group of two other families whose children have the same syndrome. If you know me, you know I don’t just sit back and wait so I decided to take matters into my own hands. I worked with Parker’s doctors to get any information I could on who discovered this syndrome and if anyone was interested in studying it. I was connected with Dr. Tatton- Brown who was from the UK and who was one of the doctors who discovered this syndrome in May 2016 (Parker was born Jan 2nd, 2016 before it was even discovered). My husband Jason and I “crashed” a conference she was at for another syndrome in order for her to meet Parker and for us to meet her. Meeting her made everything feel real but we also realized we had a lot to do to bring awareness about HIST1H1E to the world. Thanks to a couple of members of the amazing Westport community I was able to get a charitable foundation (501c3) set up which I believed was the first step in putting this syndrome on the map. As this was being set up, I was given a research report about one patient with HIST1H1E from Duke. I reached out to the doctor who put out the report to see if he had an interest in studying this syndrome and when I got the answer YES I didn’t think I could be any happier. Then Dr Jiang told me he would be moving up to Yale to become the Chief of Medical Genetics. On that day I felt like a small weight was lifted off my shoulders. I watched enough Grey’s Anatomy to know that “the chief gets what the chief wants” so when he said he was going to study Parker’s syndrome, he meant it. Dr Jiang is an amazing man and he is truly brilliant. He spends 90% of his time in the lab with mice and mini-brains. He has worked on cures for many different syndromes, specifically Angelman which currently is FDA approved and being rolled out. He truly believes a cure for Parker’s syndrome is not that far off (think 6-7 years).This might not benefit Parker in the way it would a newborn but if It could give her and all of the other children a better way of life, sign me up. Like I said, somehow I won the jackpot with this doctor coming into our lives and being in our back yard. My goal now is to try and bring as much awareness and raise as much money as we can to support HIST1H1E.
My entire community – especially the Westport community – has been truly amazing and we couldn’t be more grateful for all the love and support. Parker is so loved by everyone she meets and we couldn’t ask for a better place to live. I am so thankful to everyone who has come into our lives from friends, therapists, teachers, and doctors. Without you, we would not be where we are today.
To date, we have raised over $200kKfor the HIST1H1E Genetic Research Syndrome Foundation, I refer to it as Parker’s Cure! All the funds raised go directly to the research in finding a cure for HIST1H1E. In October 2019 right before Covid we fortunately were able to bring 10 families together from across the world to meet in CT. We met with both Dr Jiang and Dr Tatton- Brown. It was amazing to have the children meet and for us to meet the other families in person. We are still very small, but we are mighty!
To learn more please visit: www.hist1h1esyndrome.com
What is the best memory from 2022…Honestly, seeing Parker’s face while we were at Disney world on the roller coasters. I have never seen her so happy and feeling so free! She is the hardest worker and strongest little girl so seeing this honestly was truly amazing (and I am not a Disney person =)), and she deserved it so much!
What is the best show you have recently (binge) watched? Tell Me Lies was pretty binge worthy, and The Sex Life of College Girls!
What is one food you could not live without? Chips and salsa…I don’t eat it much but it is a favorite
What is one thing people would be surprised to know about you? I played Division 1 squash in college
If you could travel to one place this next year, where would it be and why? Going to Paris with my husband for my 40 th birthday! We have been before but the idea of eating, drinking and shopping my way through Paris sounds like a pretty good way to bring in the next decade
If you had 24 hours to do whatever you wanted to do, what would it be? Sleep, get a massage, sleep some more and have amazing food and wine!
Are you a morning person, or a night owl? How does sleep fit into your life? I am definitely a night owl but I still need my sleep. I don’t get much but I take what I can get!
What thing has surprised you most about being in the suburbs? Everyone is so social and we go out more here than we did in the city. Everyone is so friendly and inclusive too.
What is the first thing you do when you walk in the door after a long day? Give my kids hugs and kisses, but then immediately shower and change into sweats!
QUICK THIS OR THAT:
At a movie: Candy or Popcorn? Both, why choose just 1
Cook or order in? Cook
Cake or Ice Cream? Ice cream hands down
Iced Coffee or Hot Coffee? Hot
Beach or Mountains? Beach, nothing like relaxing on a beach with a good book
Puzzle or Board Game? Board game
Wine or a Cocktail (if cocktail, which one?) Red wine
Reading or writing? Reading
Before bed: Social media or book/TV? Social media and tv
Watch or play sports? Love to play sports
Stay in or go out? Go out
Comedy or Drama? Depends on my mood but recently I love a good laugh