Gay Grossman

Honored that our 9th film award is “Best Documentary” from San Diego Film Awards. Even more special is that the movie’s undiagnosed families who live in San Diego, the Yius and the Grossmans, were able to accept the award in-person at the red carpet event! Undiagnosedfilm.com

Do you remember when you joined Twitter? I do! #MyTwitterAnniversary

Today is the day we all give gratitude to our researchers who work every day to help us, to our clinicians who care for us, and the families affected by this disorder who make up our community.

Tonight is the night to #LightUpForRare #LightUpForRareSanDiego

@livinlavidalopo @livinlavidalopo Total truth. Create a leave behind with #lipodystrophy info for next visit. Separately, type up questions, rx needs, history etc specific to you.

Had an appt with a new GP 🩺today. 15-minute window to explain #lipodystrophy, my current health, current and new 💊 I need, routine and special tests 🩻 I need & family history. I got through 1/8th and will return in 3 months to continue the conversation. 😳#RareDiseaseTruth

@OnceUponAGene It shouldn't be so difficult.

It took me almost 4 years and it's official. My son now has Medicaid and DDA. ☑️100's of hrs of intake over and over and over ☑️3 home visits from social worker ☑️Days of zoom hearing with the court ☑️Swearing, crying, hair loss #RareDiseaseTruth #CTNNB1

@Aetna 56 minutes on hold, calling daily to know if disabled child will have coverage. Disconnection of call also daily. Please call me

.@GayGrossman's daughter Lilly went undiagnosed for 15 yrs before #WGS diagnosed her w/ ADCY5-related dyskinesia "I can clearly remember being up all night for 15 yrs + thinking there is no end to this, no one can help" Read The Grossman's rare reality insideprecisionmedicine.com/magazine-editi…

@RareBeacon Thank you for sharing.

NY Times | Smarter Living: How to Make (and Keep) a New Year's Resolution nytimes.com/guides/smarter…

@OnceUponAGene @PedsGCAbby @KaraAyik adcy5.org/resources

@PedsGCAbby @KaraAyik @GayGrossman can you share the link for yours

#genechat #RareDisease What are your favorite inclusive children’s books? I need some more for my office! These are two I already have and love!

Proof @taylorswift13 changes lives. MRI music requested by my daughter. Before rolling her in, she said, “Please play Taylor’s 10 min song 4x” and when started, toes began to move. #RareDisease

Two more days until Concert for Cures featuring Alicia Keys and the @SanDiegoSymph! Look forward to seeing our cancer fighting community Friday night at the Rady Shell! curebound.org

First combined team meeting with @GlobalGenes today! We are ready to empower the next generation of rare disease advocates! #OwnIt #CareAboutRare

@AircraftInteri2 please recommend users of wheelchairs be included on advisory committees. aircraftinteriorsinternational.com/news/industry-…

@NeenaNizar Beautiful. Smart. Top advocate.

18 months after my jaw reconstruction, slow and frustrating recovery, I finally have teeth. I'm still getting used to the new me, but I guess in Rare, you are constantly rediscovering yourself. #JansensDisease #RareDiseaseTruth

@Srotberg15 Overselling is not good. Period.