#Nlorem

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#Nlorem Reel by @marleytherare - A lot can happen in a year! Ask us how we know!! 😬 2023 was a gut punch for our family. Marley received her #Nars1 genetic diagnosis in January 2023
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@marleytherare
A lot can happen in a year! Ask us how we know!! 😬 2023 was a gut punch for our family. Marley received her #Nars1 genetic diagnosis in January 2023, and we connected with @therorybellefoundation. In February, God presented us with something we had never considered: an individual medicine created just for Marley and her genetic mutation! By July, we had secured the best pediatric neurologist @childrens / @utswmed in Dallas to oversee her care. Come September, we were asked to have Marley undergo an MRI to see if she would be accepted into the @nloremfoundation program, where they would create an ASO (individual medicine for free, for life) for her. In October, we were accepted, and by November, the lab had her samples to start working on our miracle. 🙌🏻 Like I said, a lot can change in a year. 🤯 Here’s to a whole lot more change in 2024! 🎉 #MarleysMiracle #RareDisease #Nlorem #rorybellefoundation #nanorare
#Nlorem Reel by @nloremfoundation - WATCH: Kuri's Story and the moment Kuri and her mom were told that she has been accepted for treatment by n-Lorem #DRPLA #ATN1
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@nloremfoundation
WATCH: Kuri’s Story and the moment Kuri and her mom were told that she has been accepted for treatment by n-Lorem #DRPLA #ATN1
#Nlorem Reel by @ourrarelife - VBS 2024 in the books! So grateful for all those that love on our Gracie girl so well. This year, I was especially soaking up the opportunities to wat
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@ourrarelife
VBS 2024 in the books! So grateful for all those that love on our Gracie girl so well. This year, I was especially soaking up the opportunities to watch Gracie “be a kid” - my heart is overwhelmed with gratitude - We are blessed! #leukodystrophy #leukodystrophycarenetwork #prayforacure #nlorem
#Nlorem Reel by @targetals - Target ALS is committed to finding treatments for all forms of ALS. We are proud of our collaboration with @nloremfoundation to find treatments for
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@targetals
Target ALS is committed to finding treatments for all forms of ALS. We are proud of our collaboration with @nloremfoundation to find treatments for nano-rare forms of ALS. #collaboration #nlorem #nanorare #EndALS #ALSresearch
#Nlorem Reel by @marleytherare - Team Marley forever and always! For all those Mamas and Daddies. Just hold on. Rest when you need to rest, but never stop running the race. You're n
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@marleytherare
Team Marley forever and always! For all those Mamas and Daddies. Just hold on. Rest when you need to rest, but never stop running the race. You're not going to believe what your kiddo is capable of. 🌟 🎶 It's like the brightest sunrise Waiting on the other side of the darkest night Don't ever lose hope, hold on and believe Maybe you just haven't seen it, just haven't seen it yet You're closer than you think you are Only moments from the break of dawn All His promises are just up ahead Maybe you just haven't seen it, just haven't seen it yet 🎶 #MarleysMiracle #nlorem #raredisease #mondaymotivation #rorybellefoundation
#Nlorem Reel by @nloremfoundation - Meet Grace Hoyt - a bright, witty high schooler with a passion for singing, art, and romantasy audiobooks. Grace also happens to live with a rare dise
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@nloremfoundation
Meet Grace Hoyt — a bright, witty high schooler with a passion for singing, art, and romantasy audiobooks. Grace also happens to live with a rare disease that has left her legally blind, unable to feel pain, and unsteady on her feet. On her 13th birthday, Grace received a first-of-its-kind ASO medicine designed by n-Lorem to preserve her remaining vision. Today, she can still read snippets of her beloved “book children” — the physical versions of her favorite audiobooks — and, importantly, recognize and assess her sometimes life-threatening skin infections, a skill that could save her life. YouTube video in our bio.
#Nlorem Reel by @ourrarelife - I will always be grateful for our support system-the people who watch over, pray for, play with, and love our Gracie girl. This awful disease has take
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@ourrarelife
I will always be grateful for our support system—the people who watch over, pray for, play with, and love our Gracie girl. This awful disease has taken so much from us, but it has also unveiled the gift of our church family and community. #leukodystrophy #prayforacure #asotreatment #nlorem #hld4 #geneticdisordersinchildren #geneticdisorderawareness
#Nlorem Reel by @marleytherare - This has been our routine for years, but it doesn't mean it gets any easier. Once a week we gather up all of our energy, drive 25 minutes and take on
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@marleytherare
This has been our routine for years, but it doesn't mean it gets any easier. Once a week we gather up all of our energy, drive 25 minutes and take on a day filled of therapy. Marley works her tail off while I answer emails and do zoom calls from the car. We are so thankful she has the best team to support her needs and even a team of scientists @nloremfoundation working on a miracle for her. 🙌🏻 I thought it might be helpful to see just how hard Marley works and just how much our family is willing to go to the ends of the earth to invest in her. 🌎 Marley has had her #NARS1 diagnosis for a year now. 🧬 Twelve months of relearning about Marley, hearing the challenges ahead, talking with other families who are walking this same path, coming to terms that she's not going to outgrow this. Ouch! As we fight this #raredisease disease, we also know everyone is fighting some sort of individual battle. If your faith is low, you're tired from the battle you're facing, or you just need to know someone has your back ... please DM us or drop it in a comment below. Our family would personally like to pray over you and your need. 🙏🏼 XX
#Nlorem Reel by @nloremfoundation - Sloane is a special case at n-Lorem-she was the first patient to receive an n-Lorem medicine originally designed for someone else. Her mother, Megan,
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@nloremfoundation
Sloane is a special case at n-Lorem—she was the first patient to receive an n-Lorem medicine originally designed for someone else. Her mother, Megan, and grandfather, Tom, join the Patient Empowerment Program to share her KIF1A journey and provide an update on how she’s doing more than six months after treatment. This episode is proudly sponsored by Hongene Biotech. Watch using the link in our bio.
#Nlorem Reel by @ourrarelife - She's a fighter. #leukodystrophycarenetwork #leukodystrophy #prayforacure #asotreatment #nlorem
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@ourrarelife
She’s a fighter. #leukodystrophycarenetwork #leukodystrophy #prayforacure #asotreatment #nlorem
#Nlorem Reel by @nloremfoundation - In celebration of #RareDiseaseDay, our team at n-Lorem decided to get together and show our colors to spread awareness for the patients and families w
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@nloremfoundation
In celebration of #RareDiseaseDay, our team at n-Lorem decided to get together and show our colors to spread awareness for the patients and families with #NanoRareDisease @rarediseasedayofficial #LightUpForRare #SupportNanoRare ⠀⠀⠀⠀⠀⠀⠀⠀⠀ We started the foundation to provide hope for nano-rare patients and families by using personalized ASO treatments for nano-rare patients for free, for life. ⠀⠀⠀⠀⠀⠀⠀⠀⠀ We would love to hear your story, feel free to use our hashtag #mynanorarestory and share your story. ⠀⠀⠀⠀⠀⠀⠀⠀⠀ #ShowYourRare #ShowYourStripes #ShowYourColours #RareDisease #RareDiseaseAwareness #Nanorare #MyNanoRareStory #nlorem
#Nlorem Reel by @marleytherare - 🫧 Spark Rare Hope: The Story Behind the Canvas 🫧 What do bubbles, embroidery, and genetic science have in common? A whole lot of hope, and a litt
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@marleytherare
🫧 Spark Rare Hope: The Story Behind the Canvas 🫧 What do bubbles, embroidery, and genetic science have in common? A whole lot of hope, and a little girl named Marley who inspired it. This one-of-a-kind canvas started as a simple art day in our backyard. Marley and I spent the afternoon blowing paint-filled bubbles, watching them float and pop across the blank canvas. Each burst left behind a beautiful splash of color … unpredictable, vibrant, and full of life. Much like Marley herself. Once the canvas was dry, I added the finishing touches with hand embroidery. Together, we created something that wasn’t just a piece of art, but a collaboration of love, creativity, and determination. The words “Spark Rare Hope” are stitched boldly, not just as a title, but as a declaration. It’s the feeling we felt the day we got the call that Marley had been accepted into the n-Lorem program. After a devastating diagnosis, that call changed everything. Our future suddenly looked different, brighter and filled with possibilities. At the bottom of the canvas, you’ll see p.Arg534, a nod to Marley’s specific #NARS1 genetic variant. But you’ll also notice something else, a firework exploding from it. Because her variant may shape her biology, but it will never define her. Marley is limitless. And the spark she carries has already ignited hope for so many. 🧵 This canvas is now up for auction, and every dollar raised will go toward n-Lorem, helping create a life-saving treatment not only for Marley, but for others just like her. Bid Now: www.nlorem.org/auctions #nlorem #raredisease #TeamMarley #marleysmiracle

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