Effie Parks (@OnceUponAGene) / X

Effie Parks

10.9K posts

Effie Parks

@OnceUponAGene

Rare Disease Advocate | Award Winning Podcaster | Speaker | Captain Connection | RareMama to my sweet, Ford, who lives with #CTNNB1 🦓

Seattle, WA

Joined November 2018

Effie Parks
@OnceUponAGene
Aug 8, 2024
Replying to @ANicholsJDMD
Have a medical kid so inpatient now & witnessed a beautiful thing last night. Dr came in, told me the plan, explained why very thoughtfully, asked my thoughts - she turned to the nurse and asked her opinion and if she had more to + or change. was spectacular. @seattlechildren
22K
Effie Parks
@OnceUponAGene
Sep 21, 2024
Replying to @moej4prez
My son is 8, had a rare disease-uses a wheelchair -and to this day, when we go in to any of the specialists we see a million times a year, we still get asked, "can he stand on the scale so we can weigh him?" They never read the chart. But they should especially read it in case it
23K
Effie Parks
@OnceUponAGene
Feb 28, 2023
Let's go, Ford!!! We've got work to do! Happy #RareDiseaseDay #AdvocateLikeAMother #CTNNB1
00:00
11K
Effie Parks
@OnceUponAGene
Sep 12, 2024
Replying to @Happywife151
Congratulations!! My mom had 4 babies in her 40's - last one at 48! Proud and happy to be one of the four little amazing fierce girls 💪💪
7K
Effie Parks
@OnceUponAGene
Jun 3, 2023
My little buddy has been in the hospital all week- he's on the mend and hopefully coming home today. To all the beautiful people I cancelled on... 😬😬😘😘 Melted rare mama 🧠 is a thing - so please make sure I get it all re-booked! Fords got his one good eye on you. #CTNNB1
4.3K
Effie Parks
@OnceUponAGene
May 14, 2023
This is for all my #RareMamas out there. You carry a weight that is otherworldly, you love fiercely and you wake up every day to make this world better for all our kids. Thank you🩷
00:00
5.5K
Effie Parks
@OnceUponAGene
Jun 4, 2023
He busted out. Peace sign an all ✌️ #CTNNB1
2.6K
Effie Parks
@OnceUponAGene
May 7, 2023
Hug your babies today. Go outside and take them for a walk. Snuggle on the couch. Send someone love. Another rare disease child was lost to a terrible disease and hearts are shattered. 💔💔💔💔🩷🩷🩷🩷
7.9K
Effie Parks
@OnceUponAGene
Jul 18, 2024
Replying to @salltweets
Words that carry no weight to me after living in Seattle for 14 years: Bigot Terf Racist Privilege Carpool lane
2K
Effie Parks
@OnceUponAGene
Mar 14, 2023
#NewProfilePic @HITeaWithGrace says people follow people - not logos. Let's see 😉 I tweet about all things #RareDisease
4.9K
Effie Parks
@OnceUponAGene
Mar 26, 2023
Applied to 3 "special needs" summer camps for my son. Got denied by all of them. #RareDiseaseTruth #DisabilityIsDiversity My take: "Special needs" summer camp criteria: 1. Have a buzzworthy diagnosis 2. Don't be "too disabled"
22K
Effie Parks
@OnceUponAGene
Aug 15, 2023
I dropped my son off to his 1st summer camp 🩷 100 kids who are all medically complex, a zillion healthcare professionals & volunteers. Lake, horses, fishing, art... My 🩷 is full and exploding The scooped him up and said, i "Don't call us, we'll call you"
2.7K
Effie Parks
@OnceUponAGene
Jun 5, 2023
Say it with me: "Patient AND Caregiver Voice" Many of the #RareDisease patients literally have no voice and have intellectual disabilities. The Caregiver Voice IS their voice. #CTNNB1
4.3K
Effie Parks
@OnceUponAGene
Mar 28, 2023
I see I have struck a nerve which is exactly what I am hoping to do. #GeneticTesting needs to be standard practice when treating children with umbrella term diagnosis'. The definition of #CerebralPalsy has already changed once and it needs to change again. Here is the problem 🧵
14K