JustJoders

Mom of three girls, including twins. Wife to a lucky man.
Galactosemia Advocate. Coffee until wine is acceptable. I love Jesus but I cuss a little.

[Chris Solari @chrissolari]

Michigan State football hires Oregon State's Jonathan Smith as next head coach https://t.co/WCXBbJKW16 via @freep

[Chris Solari @chrissolari]

Mel Tucker future in limbo. How will Michigan State respond to sexual harassment claim? https://t.co/I03b4lDOxd

[JustJoders @writergirl04]

We're running out of time to let the @US_FDA know that our community deserves a treatment. Please share! #PaveTheWayFDA #ThisIsGalactosemia

[GalactosemiaFDN @GalactosemiaFDN]

#ICYMI - Listen & share @PatientsRiseNow podcast episode with our own Jodie Solari! She shares about the improvements parents are seeing in their children in the govorestat trial and our work to get @US_FDA to listen. #PaveTheWayFDA #ThisIsGalactosemia https://t.co/1quBFyh9v0

[JustJoders @writergirl04]

A couple weeks ago I was interviewed on the Patients Rising Podcast - and it published today! Check it out and then read my blog for all the things I didn't have time to say, but wish I could have. https://t.co/4yZJsTWbm1

[Patient’s Right to Know 340B @340BPatients]

TODAY: A mother’s journey to advocacy following her two daughters’ #galactosemia diagnosis.

She talks about why patient experiences must be taken into account when reviewing new drugs: https://t.co/l1jRwFYvb3

@galactosemiaFDN

[JustJoders @writergirl04]

Good stuff from @chrissolari.

[Chris Solari @chrissolari]

Michigan State basketball's Mady Sissoko risked life to see schools he helped build in Mali, wants to continue providing for his village https://t.co/IlShhfoCNI

[JustJoders @writergirl04]

If you haven't already, please sign this petition to help our #galactogirls!

[GalactosemiaFDN @GalactosemiaFDN]

Check out our petition urging the FDA to consider #galactosemia patients’ and caregivers' perspectives when reviewing the potential first-ever treatment for this #RareDisease. Can you help us get to 10,000 signatures? https://t.co/nAfByHembv #PaveTheWayFDA #ThisIsGalactosemia

[JustJoders @writergirl04]

Support our #galactogirl and our community by signing and sharing the petition: https://t.co/PxYqZDN7Iq

[GalactosemiaFDN @GalactosemiaFDN]

Kids with #galactosemia have to be strong. We fight every day. @US_FDA , now we need you to fight for Francesca who is living with galactosemia. We can’t stop. We won’t stop. #PaveTheWayFDA #ThisIsGalactosemia #RareDisease https://t.co/bREzFUmcLE

[JustJoders @writergirl04]

https://t.co/PxYqZDN7Iq

[JustJoders @writergirl04]

I’m so proud to be this girl’s mama. She is strong. She is brave. She deserves a treatment. Please sign the petition and let the @US_FDA know we need a treatment! https://t.co/N4CQuRTsFI

[JustJoders @writergirl04]

The only thing that would be more devastating than not having a treatment option at all would be the @US_FDA not approving a medicine that has made a positive impact for those who received it during the clinical trial. Please sign the petition. #PavethewayFDA #RareDisease

[Chris Solari @chrissolari]

Today, after 2 years on placebo in a clinical trial, my daughter took a first dose of a drug we hope can change the life of her, her younger sister and many others with a rare genetic condition, galactosemia. Please consider signing a petition to the FDA. https://t.co/IJiaJAxQtx

[JustJoders @writergirl04]

I am imploring the @US_FDA to listen to our community voice and understand our urgent need for a treatment. https://t.co/xBUW3G6V5c

[GalactosemiaFDN @GalactosemiaFDN]

Improvements across daily living activities, behavior, cognition and tremor would be significant to the galactosemia community. We need a treatment and every minute counts @US_FDA #PaveTheWayFDA #ThisIsGalactosemia

[JustJoders @writergirl04]

Our #GalactoGirls need a treatment @US_FDA! #PaveTheWayFDA #ThisIsGalactosemia #raredisease

[GalactosemiaFDN @GalactosemiaFDN]

.@US_FDA, please listen to the galactosemia community as you review govorestat, which improved daily living, behavior, cognition, fine motor skills, adaptive skills & tremor vs placebo. We need a first-ever treatment for our kids. #PaveTheWayFDA #ThisIsGalactosemia

[JustJoders @writergirl04]

Oooops I did it again. Breaking my popsicle friend back out to respond to unsolicited political texts.

[JustJoders @writergirl04]

Had a great time talking to my co-worker about our journey navigating #galactosemia #RareDiseaseDay

[Bill Krieger @BillKrieger2]

Welcome to the adventures of the Galacto Girls and the Dairy Queen. Wondering what this is all about? Listen in as Consumers Energy's Jodie Solari explains the rare disease that her daughters have and how it has impacted her family.
https://t.co/HmCm5y0BzZ

[JustJoders @writergirl04]

"What I'm going to tell them tomorrow is, ‘I got a job to do, too. And my job is to push you as far as I can push you. And yet understand that each one of you are going to handle things differently. So help me help you.’ That's gonna be my message.”

[Freep Sports @freepsports]

Tom Izzo knows Michigan game can help Michigan State heal, but some things are bigger than rivalries https://t.co/xH2TCFk4cF

[JustJoders @writergirl04]

I cried dropping my 8 yo off today. Leaving our kids at school should not be scary. She said maybe the man shot people at #MichiganStateUniversity because he didn't like #ValentinesDay. My heart is breaking for our community and our kids. #GunReformNow https://t.co/RoWX7iMpq1

[David Jesse @reporterdavidj]

Am at Michigan State University where police will hold first media briefing at 11 pm. I will live tweet. @freep What we know about reported shooting at Michigan State https://t.co/8JTE0UKYyd via @freep

[JustJoders @writergirl04]

Happy Rare Disease month! Friday is the deadline to sign up and get the event swag. Other registration options below. Event details here: https://t.co/q2smQsKTzf

[JustJoders @writergirl04]

We would love for you to join us - there is still time to register to support our #galactogirls and raise money for the @GalactosemiaFDN.

[JustJoders @writergirl04]

Only two weeks left to register and get a t-shirt and swag! Join us in Lansing for Glow bowling on March 5. Get details here: https://t.co/q2smQsKlJH #galactosemia #RareDiseaseDay

[Carolyn Bloodworth @BloodworthCare]

I signed up for the GLOW for Galactosemia 2023 on Mar 5, 2023! Join me and support @writergirl04 and her adorable family! Join the #galactogirls https://t.co/RYhjzlc8PX