Justin West

Dr. Justin West is the director of plastic and reconstructive surgery for Finesse Plastic Surgery in Orange County, CA.

[Justin West @DrJustinWest]

@cureSYNGAP1 @ClementYChow @rarebasepbc @omidkarkouti @eperlste @onnofaber @JMGraglia Thanks for posting this @JMGraglia Response coming tomorrow. Sit tight.

[CURE SYNGAP1 aka SynGAP Research Fund 501(C)(3) @cureSYNGAP1]

Where is the best list of public drug repurposing wins for rare monogenic CNS disorders? @ClementYChow @rarebasepbc @omidkarkouti @eperlste @onnofaber @JMGraglia

[Justin West @DrJustinWest]

@FiladelfiaGene1 @EpiCARE_ERN @EpipedC @Elegardella @Filadelfia_DK @NicolaSpecchio_ @stephane_auvin @ARZIMANOGLOUAL1 @malenicamasa96 @gaetan_lesca Let’s find time to catch up soon. We are evaluating two trials that we would love your feedback on. Also working on consensus recommendations that would benefit from your input 😊

[Justin West @DrJustinWest]

Thank you Effie Parks for hosting me on your podcast so I could share the story of our journey to save Andrew. The rare community is so lucky to have shining stars like you advocating for our children. https://t.co/HsasEWmzpN

[Justin West @DrJustinWest]

@OnceUponAGene @KCNT1_Epilepsy Thanks for having me on the podcast Effie. You’re a terrific host and amazing advocate.

[Effie Parks @OnceUponAGene]

"Surgeons tend to be problem solvers and we like definitive, quick solutions we can act fast on. I realized I couldn't carry the same emotional weight for my patients that I did before my son's diagnosis."
Listen to @DrJustinWest @KCNT1_Epilepsy
https://t.co/gBwlaJGEo9

[Justin West @DrJustinWest]

@JMGraglia @cureSYNGAP1 @BostonChildrens @Axonis_US @SVH_neuro @KadamLab @KCNT1_Epilepsy 🌎#rareparents #raredads #raredadswhospendtoomuchtimetogether:)

[Justin West @DrJustinWest]

@AnaheimDucks @ArrowheadWater Would it be cool if I pulled a Jedi mind trick to finish this thing off? Ah…yeah.

[Justin West @DrJustinWest]

@JaxsonTravis4 I spent enough time with the neurosurgeons during my residency to know how devastating those can be. Best we can do is give our kids a chance to be the best version of themselves. Be well.

[Justin West @DrJustinWest]

@Gionta1222 @JaxsonTravis4 @AnaheimDucks @shattdeuces Thanks for supporting our little guy. He’s tough. And this year he will get into a drug trial that we hope can change his life and bring him back to us.

[Justin West @DrJustinWest]

@DanZimgolf @AnaheimDucks @shattdeuces He did! It’s been a long fight. Days like this remind us that we have people in our corner supporting us. Go Ducks!

[Justin West @DrJustinWest]

@JaxsonTravis4 @AnaheimDucks @shattdeuces Hey Jason. Our little man is tough as nails. And he has parents who fight like crazy for him. Fortunately we have drug trials starting this year which will hopefully shut them down for good and allow him to learn to walk and talk. Help us fight for him!😊 https://t.co/Ms58TjcMbq

[Justin West @DrJustinWest]

@AnaheimDucks @shattdeuces Thank you to the Anaheim Ducks for having Andrew and our family at practice today! Kevin Shattenkirk could not be a nicer guy.

[Anaheim Ducks @AnaheimDucks]

Today, 5-year-old Andrew from Newport Beach joined us to watch the team practice. Andrew was born with KCNT1 Epilepsy. 

He has no ability to walk or talk and suffers from 50 seizures a day. 

Today is National Epilepsy  Awareness Day.

[Justin West @DrJustinWest]

@OnceUponAGene It took us 6 months and I thought that was unacceptable. Four years is insane. You need to get someone to share that story as broadly as possible. If someone like you who is such a great advocate struggled that much imagine the stories of the thousands of other rare parents.

[Becky Sansbury @AftrTheShock]

Brilliant visual of #RareDisease “swarms” in the brain. Kudos @JMGraglia for the visual & the descriptive name. #RareSwarm

[Justin West @DrJustinWest]

AI Finds Drug Candidate for Liver Cancer in 30 Days | Psychology Today. https://t.co/IBBvhdyclQ

[Justin West @DrJustinWest]

@evanthegolden @NewportBeachPD I never saw people doing this when I was growing up. Now I can look out my office window and watch 10 cars per hour park in the closest handicap spot and RUN in to pick up their food. Eroded values and inflated sense of self.

[Justin West @DrJustinWest]

If you have a blue hang tag use it. If not, stay out of the handicap spaces. My 5 year old can’t walk.Thank you for the exercise I got carrying him through the parking lot past your car. ⁦⁦@NewportBeachPD⁩ has better things to do than remind people to act honorably.