Effie Parks

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Effie Parks

Effie Parks

@OnceUponAGene

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

Seattle, WA Katılım Kasım 2018
3.9K Takip Edilen6.5K Takipçiler
Effie Parks
Effie Parks@OnceUponAGene·
@JEFFVARNER As someone who was a victim to a liar like this - thank you.
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Effie Parks
Effie Parks@OnceUponAGene·
@mdvirgilio I would have had at least 5 if my first wasn't born with a rare disease
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Mike D'Virgilio, aka Based Boomer
It bums me out how many families have only two kids. It’s a pandemic! Do they really only believe they can only handle two? What’s up with that? I know the answer; it's a rhetorical question. I think it’s bordering on sin for a couple to limit themselves to having two children, for whatever reason. At best it’s a cliché. We’ve attended a goodly number of churches over the decades, and since I’ve become a full-on natalist it distresses me how many families have two children. I’m not saying all Christian families have to go old school and have ten kids like our ancestors, but as I told a young friend of mine recently and my daughter as well, you will never, ever regret having more children. You get to bring more image bearers of God into the world, and into eternity, to love and nurture and raise. So, young Christian couples, be fruitful and multiply! It’s not a suggestion.
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Infinity
Infinity@infinity__oo·
@WallStreetApes "Nothing pisses me off more than seeing a man get tits for free..." Fixed that for you.
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Wall Street Apes
Wall Street Apes@WallStreetApes·
Americans are furious finding out the transgender men are getting free taxpayer funded breast implants when they have to pay thousands of dollars for life saving diabetics medication “Nothing pisses me off more than seeing a trans woman get tits for free when my type 1 diabetic ass has to pay literal thousands of dollars for my supplies — the crazy thing is, I need my stuff to live. Literally, I needed to live. If I didn't have it, I would be gone in a week, maybe less” Many people wouldn’t believe this but it’s actually true, trans get free breast implants in America 15 states explicitly cover transgender breast augmentation, implants, under Medicaid But it gets worse 27 states and DC have Medicaid policies that explicitly or protectively cover some gender-affirming care including surgeries Get ready for this Chest and genital procedures are covered more often than facial or other surgeries for transgenders It’s so insane
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Jonathan Choe
Jonathan Choe@choeshow·
#EXCLUSIVE: Furious South Seattle neighbors protested Saturday morning as Mayor Katie Wilson touted major weekend street closures this summer to accommodate cyclists. This move includes Lake Washington Blvd where I chased down mayor Wilson to ask questions as she took off on a bike. 🧵👇
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Markie Devo
Markie Devo@markie_devo·
90’s Pizza Hut just may save the world!🤩🍕🙌🏻 📍States with a “Pizza Hut Classic”>>AR, FL, GA, IA, IL, IN, KY, LA, MD, MI, MN, MO, MT, NC, NE, NJ, NY, OH, OK, PA, SC, SD, TN, TX, VA, WI, WY (News/Image::Pizza Hut, Rolando Pujol, CBS News, Cleveland Magazine) Would you like a location in your state👇🏻
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DK🇺🇸🦅🇺🇸
When you go out grocery shopping, what’s the part that annoys you the most?
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Benny Johnson
Benny Johnson@bennyjohnson·
I’m passing through Marysville, Montana today with my family. This once was the richest gold mining area in the world. Now it’s a peaceful small town. It’s places like these that remind us that America was built by pioneers that braved the wild and settled this great land 🇺🇸
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Will Rinehart
Will Rinehart@WillRinehart·
This was by far the most emotionally taxing part of settling my parent’s estate. My parents died months apart, both at the age of 71, two years ago, and what made it difficult was coming to terms with all of the life planned to live. What really got me were the empty baby books my Mom got for the grandbabies yet to be. I have a feeling a lot of Millennials, when they are faced with this decision, are just going to junk it all. While I understand that path, I just couldn't do it. I went through every last item as a last act of service to my parents who gave me so much. I went through every piece of paper, every picture, every drawer, organizing the stuff that is important while throwing away all the junk. I filled two 30-yard roll offs with trash, gave away furniture and kitchenware to my young cousins starting their own life, and still have a full storage unit of stuff. My parents always talked about cleaning out the house, and for a while, I was frustrated that I did what they never could. But dealing with it all resulted in a form of self-revelation. I found my Mom's poetry, clippings from my grandfather's political campaigns, and long lost letters from my great grandmother. I found my uncle's hand carved box that I had never seen before, and the knives they took away from me as a kid. I found my old boombox that would lull me to sleep that I now use in our second bedroom for audio. At the time, I saw the task as one of stewardship. Now it I understand it as something much more. I was coming to terms with two lives that have passed, one psychically loaded item at a time. I sorted every item with care rather than avoidance, recovered aspects of myself I thought were lost or didn't even know, and have emerged with a richer, more continuous sense of my place in the world. I am forever indebted to my wife @CharDreizen for giving me the space and the time to deal with all of it. I know others don't have such understanding spouses or partners. But when I underline passages in a book using a Paper Mate #2 that I know was my Dad's or look up from my desk to see my Mom's conch shell collection mixed with my own sperm whale trinkets, I feel this deep connection with them. But that connection is not imbued with nostalgia for childhood. It reminds me that my childhood has long since passed, that my home is the one I've built with my wife, and that I am the keeper of what they left behind. They are not behind me. They are with me, moving forward.
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Laura Lupin@bugsandfishes

When your parents die you will, if you're lucky, be an adult with a home full of your own possessions and all of a sudden you have to fairly swiftly deal with your parents home and all of their possessions and you absolutely cannot cram all of the latter into the former.

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Mr PitBull Stories
Mr PitBull Stories@MrPitbull07·
During a fan event in 2022, Michael J. Fox was signing autographs for a long line of admirers when a woman approached him, holding a carefully preserved "Back to the Future" poster. Most fans wanted a signature, maybe a quick photo, a handshake, a memory to take home. But this woman carried something heavier in her hands. Her voice shook as she asked Fox to write a personal message for her late father, a man who had loved Back to the Future for most of his life. She explained that the film had become their tradition, something they watched together over and over again while her father battled a painful illness that slowly stole pieces of him away. Every viewing became a moment of escape. A moment where hospitals, fear, and heartbreak disappeared for a little while. Fox listened carefully, the marker resting silently in his trembling hand. For a second, the noisy fan event around them seemed to fade into the background. He had met thousands of fans throughout his career, but stories like this always hit differently. Because to them, these movies weren’t just entertainment. They were memories people clung to when life became unbearable. Since being diagnosed with Parkinson’s disease in 1991, Fox has spent decades fighting battles most people never fully see. Yet he continued showing up for fans, even on difficult days when every movement demanded effort. And this moment clearly touched him deeply. The woman explained that even during her father’s final days, they still watched Back to the Future together. Marty McFly’s adventures through time became more than a movie. It became comfort. Familiarity. One last connection between a father and daughter trying desperately to hold onto each other. Fox, usually quick with humor and effortless charm, fell unusually quiet. He looked down at the poster carefully, almost as if he understood the weight it carried. Then he looked back at the woman, his eyes softening as her words settled in. Instead of rushing through another autograph, he slowly began writing a heartfelt note. His hand trembled from Parkinson’s, but he refused to hurry. Every word mattered. Every letter carried intention. When he finally handed the poster back, the woman held it tightly against her chest as if she were protecting something priceless. Fox smiled warmly at her, a quiet smile filled with understanding rather than celebrity performance. And for a brief moment, neither of them needed to say anything else. Later, Fox reflected on encounters like this, admitting they remind him why his work still means something after all these years. Fame fades. Box office numbers disappear. Awards collect dust. But stories survive inside people’s lives. A movie watched beside a hospital bed. A shared laugh during painful days. A father and daughter finding comfort in the same familiar scenes while time slipped away faster than either of them wanted. That’s the kind of impact Michael J. Fox never expected to leave behind. And maybe that’s what makes it unforgettable.
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CURE ID
CURE ID@id_cure·
cure.ncats.io/create: The future of medicine depends on collaboration and discovery. Spread awareness of CURE ID and join conversations around rare cancers, infectious diseases, clinical literature, and medication.
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Effie Parks
Effie Parks@OnceUponAGene·
This weekend my daughter Esme and I were back in the kitchen doing our favorite thing and baking together. She is officially the brown butter boss. Last time a little butter pop got her and scared her. This time, the second the butter started heating up, fight or flight immediately hit. She got whiny and dramatic. “I don’t want to do it. I’m scared it’s going to pop at me again. I am not doing it!” I told her she cannot just quit something because it scared her once. Our recipe literally does not work without her browning the butter. She is the best at it and our cookies would be sad and flat if she didn't help. She was wearing a sleeveless dress, so I demanded she go put on a long sleeve shirt and she would be just fine. In that moment I definitely wondered if I was just handing her perfect material for an annoying future therapist to validate her controlling mother narrative. Meh, worth it. A few minutes later she marched out wearing a full winter hat, a thick sweatshirt, and gloves. She didn't say a word and climbed right back up on her stool and went to war with that butter like a tiny overdressed knight. I laughed and my heart basically exploded with love and adoration. She felt the fear, suited up and showed up. (And it was clear she was proud of her outfit) This silly little moment feels like the perfect snapshot of our rare disease life. How it throws unexpected pops (way worse than some Kerrygold and more like boiling, blistering lava, but ya know) at us all the time. The fear is real. The anxiety is valid. But we keep stirring anyway. Sometimes we show up in all sorts of armor, sometimes with knowledge, community, self care rituals, and the stubborn love that reminds us this recipe needs every single one of us. Especially the siblings who quietly carry their own worries. So. Keep stirring. Suit up however you need to. Your part in the recipe matters more than you know!
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Mark Palmer
Mark Palmer@MarketPalmer_·
The older I get, the more I realize making memories with family, a solid fitness routine, a job you don't hate, a group chat of great friends, annual traditions, and a productive hobby will lead to a very happy life.
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Tokyo
Tokyo@otokyo__·
I need a good name for this cat 😍
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James Woods
James Woods@RealJamesWoods·
I truly enjoyed the interchange. Benji is a gentleman. I was touched by the personal video response he sent. You’re a good dad.
heyydude@heyydude

@RealJamesWoods Hey James, that would be FANTASTIC! Thank you so much. Here is a picture of the birthday boy. Benji is his name - his birthday was April 25. I will make sure he hears "Hades" talking to him. 👍

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Jum
Jum@JesterJum·
Not to sound geriatric but...you know what i miss? Turning something on and it just works. No account setup. No app download. No QR code. No "sign in to continue". Just plug it in and it does the thing its supposed to do.
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James Woods
James Woods@RealJamesWoods·
What is your son‘s name? I just followed you, so I’ll send a DM with a little message to him.
heyydude@heyydude

@RealJamesWoods It's a great character, James. My 25 yr. old autistic son loves the Hercules saga from Disney, so we hear your voice in our house so often we had to buy him headphones. 😆

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Luccas
Luccas@Shery_cricket·
My son uses a wheelchair, and school dances were always painful for him. Not because he didn’t want to go. Because nobody ever asked him to dance. Last winter, his class planned a formal dance, and he pretended not to care about it at all. Then three days before the event, a girl from his art class showed up at our house with a small box. Inside was a blue bow tie. She smiled and said, “I thought it would match my dress.” My son stared at her speechless. At the dance, she didn’t spend the night feeling sorry for him or treating him differently. She danced beside him, laughed with him, introduced him to her friends, and made sure he never felt left out for a second. Near the end of the night, I overheard my son quietly ask her, “Why me?” She looked confused and answered, “Because you’re my favorite person to talk to.” On the drive home, my son kept smiling at the window like he was replaying the entire night in his head.
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