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Today we honor the HNRNPU community — families, researchers, and advocates who are driving progress and hope for those living with HNRNPU-related neurodevelopmental disorders.

We are grateful for experts like Dr. Meena Balasubramanian, whose groundbreaking research and collaboration with families continue to advance understanding and care.

Together, we’re building a better future for rare — one discovery, one connection, and one story at a time.

#HNRNPUAwarenessDay #HNRNPStrongertogether2025 #RareDisease #BetterFuture4U #BF4U #HNRNPU #RNDD

Today we honor the HNRNPU community — families, researchers, and advocates who are driving progress and hope for those living with HNRNPU-related neurodevelopmental disorders.

We are grateful for experts like Dr. Meena Balasubramanian, whose groundbreaking research and collaboration with families continue to advance understanding and care.

Together, we’re building a better future for rare — one discovery, one connection, and one story at a time.

#HNRNPUAwarenessDay #HNRNPStrongertogether2025 #RareDisease #BetterFuture4U #BF4U #HNRNPU #RNDD

October 20th is HNRNPU Awareness Day! 💜 Better Future 4 U is proud to stand with the HNRNP Family Foundation and families around the world raising awareness for all HNRNP-related neurodevelopmental disorders.
Every gene has a story and every story matters.

#HNRNPU #HNRNPStrongerTogether2025 #BF4U #RareDiseaseCommunity #hnrnpfamilyfoundation #betterfuture4u

October 20th is HNRNPU Awareness Day! 💜 Better Future 4 U is proud to stand with the HNRNP Family Foundation and families around the world raising awareness for all HNRNP-related neurodevelopmental disorders.
Every gene has a story and every story matters.

#HNRNPU #HNRNPStrongerTogether2025 #BF4U #RareDiseaseCommunity #hnrnpfamilyfoundation #betterfuture4u

🎃👻 Get ready for Bites, Brews, Boos & BF4U! 🍻✨

Join us for a spooktacular night of music, food, drink specials, a costume contest, and more — all while supporting Better Future 4 U and our mission to fund research and treatment for HNRNPU. 💜

🗓️ Friday, October 24, 2025
⏰ 4:00 PM
📍 EasySpeak - 586 Milford Harrington Hwy, Milford, DE 19963

Your Halloween fun fuels HOPE for families impacted by this rare genetic disorder. 🕷️🦇

#BF4U #HNRNPU #RareDisease #RareButStrong #HopeInAction #Fundraiser #HalloweenFun #CureHNRNPU
#EasySpeak #MilfordDE #DelawareEvents #DelawareFundraiser #MilfordDelaware #RareResearch #BetterFuture4U

🎃👻 Get ready for Bites, Brews, Boos & BF4U! 🍻✨

Join us for a spooktacular night of music, food, drink specials, a costume contest, and more — all while supporting Better Future 4 U and our mission to fund research and treatment for HNRNPU. 💜

🗓️ Friday, October 24, 2025
⏰ 4:00 PM
📍 EasySpeak - 586 Milford Harrington Hwy, Milford, DE 19963

Your Halloween fun fuels HOPE for families impacted by this rare genetic disorder. 🕷️🦇

#BF4U #HNRNPU #RareDisease #RareButStrong #HopeInAction #Fundraiser #HalloweenFun #CureHNRNPU
#EasySpeak #MilfordDE #DelawareEvents #DelawareFundraiser #MilfordDelaware #RareResearch #BetterFuture4U

🌍💜 Community Connect is back! We enjoyed meeting so many of you in person last month in Ponte Vedra, and we’re excited to continue the conversations online. Join HNRNPU parents the last Friday of each month to connect live with our community.
✨ We’re offering both a Daytime and an Evening option so families across time zones can participate:
🕛 Daytime
11–12 PM PT | 12–1 PM MT | 1–2 PM CT | 2–3 PM ET
👉 Register here: Daytime Link: https://us02web.zoom.us/meeting/register/z4PWaAIrTpOrgp5yhJT4cQ
🌙 Evening
5–6 PM PT | 6–7 PM MT | 7–8 PM CT | 8–9 PM ET
👉 Register here: Evening Link: https://us02web.zoom.us/meeting/register/TPLWjv_aQfyESYC7wkBSTg
After registering, you’ll receive a confirmation email with all the details to join.
Let’s Unite | Uplift | Understand 💜

@BetterFuture4U.HNRNPU #RareDiseaseResearch #RareDiseaseAwareness #GeneticResearch #ResearchMatters #CureRare #RareDiseaseCommunity #StrongerTogether #UniteForRare #FamiliesForACure #PatientAdvocacy #HNRNPU #BF4U #RareNeurodevelopmentalDisorder #BetterFuture4U #CommunityConnect #Unite #Uplift #Understand

🌍💜 Community Connect is back! We enjoyed meeting so many of you in person last month in Ponte Vedra, and we’re excited to continue the conversations online. Join HNRNPU parents the last Friday of each month to connect live with our community.
✨ We’re offering both a Daytime and an Evening option so families across time zones can participate:
🕛 Daytime
11–12 PM PT | 12–1 PM MT | 1–2 PM CT | 2–3 PM ET
👉 Register here: Daytime Link: https://us02web.zoom.us/meeting/register/z4PWaAIrTpOrgp5yhJT4cQ
🌙 Evening
5–6 PM PT | 6–7 PM MT | 7–8 PM CT | 8–9 PM ET
👉 Register here: Evening Link: https://us02web.zoom.us/meeting/register/TPLWjv_aQfyESYC7wkBSTg
After registering, you’ll receive a confirmation email with all the details to join.
Let’s Unite | Uplift | Understand 💜

@BetterFuture4U.HNRNPU #RareDiseaseResearch #RareDiseaseAwareness #GeneticResearch #ResearchMatters #CureRare #RareDiseaseCommunity #StrongerTogether #UniteForRare #FamiliesForACure #PatientAdvocacy #HNRNPU #BF4U #RareNeurodevelopmentalDisorder #BetterFuture4U #CommunityConnect #Unite #Uplift #Understand

Exciting updates from the research front! 🧬 Dr. Meena Balasubramanian and her incredible team share progress on HNRNPU—from zebrafish models to viral vector development and drug repurposing. Every step brings us closer to understanding this rare diagnosis and finding potential treatments.

Thank you to the families, researchers, and supporters driving this momentum forward. 💜 Together, we’re building a Better Future 4 HNRNPU.

#HNRNPU #RareDiseaseResearch #BF4U #GeneticResearch #HopeInScience #BetterFuture4U #MilesWithMary

Exciting updates from the research front! 🧬 Dr. Meena Balasubramanian and her incredible team share progress on HNRNPU—from zebrafish models to viral vector development and drug repurposing. Every step brings us closer to understanding this rare diagnosis and finding potential treatments.

Thank you to the families, researchers, and supporters driving this momentum forward. 💜 Together, we’re building a Better Future 4 HNRNPU.

#HNRNPU #RareDiseaseResearch #BF4U #GeneticResearch #HopeInScience #BetterFuture4U #MilesWithMary

Mary’s upcoming journey stretches 4,444 miles, but her impact reaches so much farther. Beginning July 12th, Mary is carrying more than luggage—she’s carrying hope for nearly 300 others around the world with HNRNPU. Her cross-country trip is powering life-changing research. One mile and one donation at a time. 💜 Donate $40 (4,000 pennies) to honor her 4,444 miles of advocacy and fuel the road to treatment. This isn’t just a trip. It’s a movement. It’s Mary in motion.

🔗 in bio
🌐 BF4U.org/MilesWithMary

#MilesWithMary #BF4U #HNRNPU #HopeInMotion #TurnMilesIntoMiracles #RareButMighty

Mary’s upcoming journey stretches 4,444 miles, but her impact reaches so much farther. Beginning July 12th, Mary is carrying more than luggage—she’s carrying hope for nearly 300 others around the world with HNRNPU. Her cross-country trip is powering life-changing research. One mile and one donation at a time. 💜 Donate $40 (4,000 pennies) to honor her 4,444 miles of advocacy and fuel the road to treatment. This isn’t just a trip. It’s a movement. It’s Mary in motion.

🔗 in bio
🌐 BF4U.org/MilesWithMary

#MilesWithMary #BF4U #HNRNPU #HopeInMotion #TurnMilesIntoMiracles #RareButMighty

✈️ Get Travel Ready for Florida! ☀️
The HNRNP-RNDD Gene Family Meeting & Scientific Conference is just around the corner—July 27–30, 2025 in Ponte Vedra, Florida!

Utilize this guide to prepare for your upcoming trip, from packing tips to local hospital info and more. Let’s make travel as smooth as possible so we can focus on connection, learning, and community. 🌴🧬

🧳 Hosted by The Yellow Brick Road Project & The HNRNP Family Foundation

#HNRNP #HNRNPU #BF4U #RareDiseaseFamilies #FamilyMeeting2025 #TravelTips #BetterFuture4U

✈️ Get Travel Ready for Florida! ☀️
The HNRNP-RNDD Gene Family Meeting & Scientific Conference is just around the corner—July 27–30, 2025 in Ponte Vedra, Florida!

Utilize this guide to prepare for your upcoming trip, from packing tips to local hospital info and more. Let’s make travel as smooth as possible so we can focus on connection, learning, and community. 🌴🧬

🧳 Hosted by The Yellow Brick Road Project & The HNRNP Family Foundation

#HNRNP #HNRNPU #BF4U #RareDiseaseFamilies #FamilyMeeting2025 #TravelTips #BetterFuture4U

✈️ Better Future 4 U is proud to sponsor Dr. Meena Balasubramanian’s international travel to the 2025 HNRNP Gene Family Meeting in Ponte Vedra, FL! Hosted by @hnrnpfamily_foundation and @yellowbrickroadproject

Dr. Meena’s presence is vital—not just as a leading HNRNPU researcher, but as someone who listens to and learns from our families. 💜 Her connection to our community helps ensure that research is shaped by the real lives behind the science.
We can’t wait to welcome her—and keep driving this work forward, together. 💫 #HNRNPU #BF4U #RareDiseaseResearch #FamilyDrivenScience #StrongerTogether

✈️ Better Future 4 U is proud to sponsor Dr. Meena Balasubramanian’s international travel to the 2025 HNRNP Gene Family Meeting in Ponte Vedra, FL! Hosted by @hnrnpfamily_foundation and @yellowbrickroadproject

Dr. Meena’s presence is vital—not just as a leading HNRNPU researcher, but as someone who listens to and learns from our families. 💜 Her connection to our community helps ensure that research is shaped by the real lives behind the science.
We can’t wait to welcome her—and keep driving this work forward, together. 💫 #HNRNPU #BF4U #RareDiseaseResearch #FamilyDrivenScience #StrongerTogether

Let’s reconnect! Our Community Connect Zoom call has been rescheduled from last month and will now take place on Thursday, June 12th! 💜
Join us to connect with other HNRNPU families and hear updates from our amazing hosts:
✨ Amanda Reuther, Paeyton’s Mom & BF4U President
✨ Lori Ligorio, Donny’s Mom & BF4U Board Member
✨ Alex Caiola, Ellie’s Mom & BF4U Vice President
📅 Daytime: 11-12 PM PT / 12-1 PM MT / 1-2 PM CT / 2-3 PM ET
👉 Register for the daytime meeting: https://us02web.zoom.us/meeting/register/LOMWy3ZQRhiQkBpshCoiHg
📅 Evening: 5-6 PM PT / 6-7 PM MT / 7-8 PM CT / 8-9 PM ET
👉 Register for the evening meeting: https://us02web.zoom.us/meeting/register/IcMaKWguRDytomQ1kKM19w
After registering, you’ll get a confirmation email with everything you need to join the meeting. Let’s unite, uplift, and understand together!
#BetterFuture4U #HNRNPU #CommunityConnect #RareDiseaseCommunity #ParentSupport #WeAreStrongerTogether

Let’s reconnect! Our Community Connect Zoom call has been rescheduled from last month and will now take place on Thursday, June 12th! 💜
Join us to connect with other HNRNPU families and hear updates from our amazing hosts:
✨ Amanda Reuther, Paeyton’s Mom & BF4U President
✨ Lori Ligorio, Donny’s Mom & BF4U Board Member
✨ Alex Caiola, Ellie’s Mom & BF4U Vice President
📅 Daytime: 11-12 PM PT / 12-1 PM MT / 1-2 PM CT / 2-3 PM ET
👉 Register for the daytime meeting: https://us02web.zoom.us/meeting/register/LOMWy3ZQRhiQkBpshCoiHg
📅 Evening: 5-6 PM PT / 6-7 PM MT / 7-8 PM CT / 8-9 PM ET
👉 Register for the evening meeting: https://us02web.zoom.us/meeting/register/IcMaKWguRDytomQ1kKM19w
After registering, you’ll get a confirmation email with everything you need to join the meeting. Let’s unite, uplift, and understand together!
#BetterFuture4U #HNRNPU #CommunityConnect #RareDiseaseCommunity #ParentSupport #WeAreStrongerTogether

Dear HNRNPU Community,

We wanted to let you know that the HNRNPU Community Connect event originally scheduled for May 30th has been rescheduled. We’re working to finalize the new date and will share it with you as soon as possible.

Thank you for your understanding and flexibility as we continue to build connections within our community.
Stay tuned for updates!

Warmly,
The Better Future 4 U Team
@betterfuture4u.hnrnpu | www.betterfuture4u.org

Dear HNRNPU Community,

We wanted to let you know that the HNRNPU Community Connect event originally scheduled for May 30th has been rescheduled. We’re working to finalize the new date and will share it with you as soon as possible.

Thank you for your understanding and flexibility as we continue to build connections within our community.
Stay tuned for updates!

Warmly,
The Better Future 4 U Team
@betterfuture4u.hnrnpu | www.betterfuture4u.org

What’s next for HNRNPU research?
Join Dr. Meena Balasubramanian and Amanda Reuther for a Q&A as they dive into the latest updates, exciting projects, and what gives families hope for the future.
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#hnrnpu #betterfuture4u #bf4u #raredisease #rarediseaseresearch #supportresearch #epilepsyawareness #purpleday #rarebutstrong

What’s next for HNRNPU research?
Join Dr. Meena Balasubramanian and Amanda Reuther for a Q&A as they dive into the latest updates, exciting projects, and what gives families hope for the future.
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#hnrnpu #betterfuture4u #bf4u #raredisease #rarediseaseresearch #supportresearch #epilepsyawareness #purpleday #rarebutstrong

🐟 Small Fish. Big Hope.
Because of you, we’re building a better future for HNRNPU. 💜
Thanks to the generosity of our donors, BF4U is proud to fund a 3-year zebrafish study led by PhD student Zuzanna. This powerful research will help us better understand HNRNPU and move us closer to potential treatments.

Your support is turning hope into action — one tiny fish at a time. Thank you. 💫

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#BF4U #HNRNPU #BetterFutureForHNRNPU #BetterFuture4U #RareDiseaseResearch #ZebrafishScience #Rare #HopeInAction #RareButMighty #ThankYouDonors

🐟 Small Fish. Big Hope.
Because of you, we’re building a better future for HNRNPU. 💜
Thanks to the generosity of our donors, BF4U is proud to fund a 3-year zebrafish study led by PhD student Zuzanna. This powerful research will help us better understand HNRNPU and move us closer to potential treatments.

Your support is turning hope into action — one tiny fish at a time. Thank you. 💫

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#BF4U #HNRNPU #BetterFutureForHNRNPU #BetterFuture4U #RareDiseaseResearch #ZebrafishScience #Rare #HopeInAction #RareButMighty #ThankYouDonors

Community Connect 💜 Join HNRNPU parents Amanda, Lori, and Alex the last Friday of the month to connect live with our amazing community of families.

Let’s share stories, support one another, and build a stronger path forward—together.

Next meeting: April 25th
Choose the time that works best for you and register below!
(After registering, you’ll receive a confirmation email with your Zoom link.)

Daytime Session:
11 AM – 12 PM PT
12 – 1 PM MT
1 – 2 PM CT
2 – 3 PM ET
Register:
https://us02web.zoom.us/meeting/register/JQoikc0ORfiaiBjWAfeRGw#/registration

Evening Session:
5 – 6 PM PT
6 – 7 PM MT
7 – 8 PM CT
8 – 9 PM ET
Register:
https://us02web.zoom.us/meeting/register/WfUuKRrkS9KIjG2wPWgfig#/registration

We can’t wait to see you there!
#HNRNPU #BF4U #BetterFuture4U #CommunityConnect #RareDiseaseParents #UniteUpliftUnderstand #HNRPUCommunity #RareButStrong

Community Connect 💜 Join HNRNPU parents Amanda, Lori, and Alex the last Friday of the month to connect live with our amazing community of families.

Let’s share stories, support one another, and build a stronger path forward—together.

Next meeting: April 25th
Choose the time that works best for you and register below!
(After registering, you’ll receive a confirmation email with your Zoom link.)

Daytime Session:
11 AM – 12 PM PT
12 – 1 PM MT
1 – 2 PM CT
2 – 3 PM ET
Register:
https://us02web.zoom.us/meeting/register/JQoikc0ORfiaiBjWAfeRGw#/registration

Evening Session:
5 – 6 PM PT
6 – 7 PM MT
7 – 8 PM CT
8 – 9 PM ET
Register:
https://us02web.zoom.us/meeting/register/WfUuKRrkS9KIjG2wPWgfig#/registration

We can’t wait to see you there!
#HNRNPU #BF4U #BetterFuture4U #CommunityConnect #RareDiseaseParents #UniteUpliftUnderstand #HNRPUCommunity #RareButStrong

☕️ Donate Your Cup and help us fund crucial research for HNRNPU, a rare genetic disorder that needs our attention. Your generosity can lead to BIG changes in the lives of those affected. Let’s come together and make a real difference! 🌟 Every dollar counts. Donate today and be a part of something bigger.
🔗(in bio) https://www.zeffy.com/peer-to-peer/donate-your-cup
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#DonateYourCup #HNRNPU #RareDiseaseAwareness #GiveUpYourCup #RareDiseaseResearch #SupportHNRNPU #DonateToday #SmallActionsBigImpact #FundResearch #GeneticDisorder #MakeADifference #CharityCampaign #GivingBack #BetterFuture4U #HopeForHNRNPU #BF4U

☕️ Donate Your Cup and help us fund crucial research for HNRNPU, a rare genetic disorder that needs our attention. Your generosity can lead to BIG changes in the lives of those affected. Let’s come together and make a real difference! 🌟 Every dollar counts. Donate today and be a part of something bigger.
🔗(in bio) https://www.zeffy.com/peer-to-peer/donate-your-cup
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#DonateYourCup #HNRNPU #RareDiseaseAwareness #GiveUpYourCup #RareDiseaseResearch #SupportHNRNPU #DonateToday #SmallActionsBigImpact #FundResearch #GeneticDisorder #MakeADifference #CharityCampaign #GivingBack #BetterFuture4U #HopeForHNRNPU #BF4U

💜 March 26 is Purple Day! 💜
Did you know that over 80% of individuals with HNRNPU experience epilepsy? This #PurpleDay, we stand in solidarity with the 65 million people worldwide living with epilepsy.
💜 Wear purple and tag us to show your support for the epilepsy and HNRNPU community!
💜 Support organizations like Better Future 4 U
💜 Swipe through to learn more about seizure first aid!
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#EpilepsyAwareness #PurpleDay #SeizureFirstAid #HNRNPU #BetterFuture4U #BF4U #HNRNPUStrong #RareDisease #GeneticEpilepsy #EpilepsyWarrior #SeizureDisorder #EpilepsySupport #TogetherForACure

💜 March 26 is Purple Day! 💜
Did you know that over 80% of individuals with HNRNPU experience epilepsy? This #PurpleDay, we stand in solidarity with the 65 million people worldwide living with epilepsy.
💜 Wear purple and tag us to show your support for the epilepsy and HNRNPU community!
💜 Support organizations like Better Future 4 U
💜 Swipe through to learn more about seizure first aid!
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#EpilepsyAwareness #PurpleDay #SeizureFirstAid #HNRNPU #BetterFuture4U #BF4U #HNRNPUStrong #RareDisease #GeneticEpilepsy #EpilepsyWarrior #SeizureDisorder #EpilepsySupport #TogetherForACure

🧬💜 Today, we stand together for Rare Disease Day! 💜🧬
At Better Future 4 U, we’re dedicated to raising awareness, supporting families, and funding research for HNRNPU—a rare genetic disorder that impacts lives worldwide.
Every voice matters. Every story counts. Together, we can make a difference and work toward a brighter future for those living with rare diseases.
✨ Join us in spreading awareness—because rare isn’t rare to the ones we love.
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#RareDiseaseDay #BetterFuture4U #HNRNPU #BF4U #TogetherForRare #AdvocacyMatters #RareButStrong

🧬💜 Today, we stand together for Rare Disease Day! 💜🧬
At Better Future 4 U, we’re dedicated to raising awareness, supporting families, and funding research for HNRNPU—a rare genetic disorder that impacts lives worldwide.
Every voice matters. Every story counts. Together, we can make a difference and work toward a brighter future for those living with rare diseases.
✨ Join us in spreading awareness—because rare isn’t rare to the ones we love.
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#RareDiseaseDay #BetterFuture4U #HNRNPU #BF4U #TogetherForRare #AdvocacyMatters #RareButStrong

Rare Disease Day is a global initiative to raise awareness and generate support for everyone who is on a rare medical journey. It takes place on the last day of February, which this year is February 28th.

Though Rare Disease Day is patient-led, everyone—including individuals, families, caregivers, healthcare professionals, researchers, clinicians, policymakers, industry representatives, and the general public—can participate in raising awareness and taking action for this vulnerable population in urgent need of attention.

Together, we are shining a light on people living with a rare disease, and collectively aim to change and improve the lives of 300 million people worldwide. Show your stripes and tag @BetterFuture4U.HNRNPU to share your support of #RareDiseaseDay
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#RareDiseases #ShowYourStripes #RareButStrong #RareDiseaseAwareness #LightUpForRare #HNRNPU #HNRNPUAwareness #BetterFuture4U #BF4U

Rare Disease Day is a global initiative to raise awareness and generate support for everyone who is on a rare medical journey. It takes place on the last day of February, which this year is February 28th.

Though Rare Disease Day is patient-led, everyone—including individuals, families, caregivers, healthcare professionals, researchers, clinicians, policymakers, industry representatives, and the general public—can participate in raising awareness and taking action for this vulnerable population in urgent need of attention.

Together, we are shining a light on people living with a rare disease, and collectively aim to change and improve the lives of 300 million people worldwide. Show your stripes and tag @BetterFuture4U.HNRNPU to share your support of #RareDiseaseDay
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#RareDiseases #ShowYourStripes #RareButStrong #RareDiseaseAwareness #LightUpForRare #HNRNPU #HNRNPUAwareness #BetterFuture4U #BF4U

🌟 This #GivingTuesday, let’s come together to make a difference for those impacted by HNRNPU. Every donation helps fuel groundbreaking research and brings us closer to a treatment. 💜✨ Together, we can create a better future. Donate today and be the hope that matters! bit.ly/BF4U or visit www.BF4U.org to learn more 💜 #HNRNPU #BetterFuture4U #RareDiseaseAwareness #BF4U #RareDiseaseResearch

🌟 This #GivingTuesday, let’s come together to make a difference for those impacted by HNRNPU. Every donation helps fuel groundbreaking research and brings us closer to a treatment. 💜✨ Together, we can create a better future. Donate today and be the hope that matters! bit.ly/BF4U or visit www.BF4U.org to learn more 💜 #HNRNPU #BetterFuture4U #RareDiseaseAwareness #BF4U #RareDiseaseResearch

Better Future 4 U extends our heartfelt gratitude to the entire HNRNPU community - our resilient loved ones, devoted families, tireless researchers, and compassionate clinicians. Your unwavering support and dedication inspire hope for a brighter future. This holiday season, we celebrate the strength of our community and the strides we’ve made together. Wishing you all a season filled with love, joy, and good health as we continue to work toward a treatment and better lives for those impacted by HNRNPU.
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#BetterFuture4U #HNRNPU #RareDiseaseAwareness #BF4U#HolidayGratitude #FightForACure #StrongerTogether #RareDiseaseCommunity #PatientAdvocacy #ResearchMatters #FamilySupport #LoveAndHealth #RareButStrong

Better Future 4 U extends our heartfelt gratitude to the entire HNRNPU community - our resilient loved ones, devoted families, tireless researchers, and compassionate clinicians. Your unwavering support and dedication inspire hope for a brighter future. This holiday season, we celebrate the strength of our community and the strides we’ve made together. Wishing you all a season filled with love, joy, and good health as we continue to work toward a treatment and better lives for those impacted by HNRNPU.
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#BetterFuture4U #HNRNPU #RareDiseaseAwareness #BF4U#HolidayGratitude #FightForACure #StrongerTogether #RareDiseaseCommunity #PatientAdvocacy #ResearchMatters #FamilySupport #LoveAndHealth #RareButStrong

🌟 A Heartfelt Thank You! 🌟
We are beyond grateful to everyone who joined us for our recent fundraiser at @easyspeakspirits! Thanks to your generosity and support, we raised nearly $5,000 for Better Future 4 U.
A special thank you to Zack and Marissa at easySpeak for a wonderful venue with great food and drinks, our HNRNPU families who hosted, @justbillmusic for great music, everyone who created baskets for our silent auction, and all of our amazing donors.
Your generous contributions are bringing us one step closer to improving the lives of those affected by HNRNPU. Thank you all for being a part of this journey. Together, we are creating a better future for those with HNRNPU! 💜
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#HNRNPU #HNRNPUAwareness #RareDisease #RareDiseaseTreatment #Grateful #BetterFuture4U #BF4U

🌟 A Heartfelt Thank You! 🌟
We are beyond grateful to everyone who joined us for our recent fundraiser at @easyspeakspirits! Thanks to your generosity and support, we raised nearly $5,000 for Better Future 4 U.
A special thank you to Zack and Marissa at easySpeak for a wonderful venue with great food and drinks, our HNRNPU families who hosted, @justbillmusic for great music, everyone who created baskets for our silent auction, and all of our amazing donors.
Your generous contributions are bringing us one step closer to improving the lives of those affected by HNRNPU. Thank you all for being a part of this journey. Together, we are creating a better future for those with HNRNPU! 💜
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#HNRNPU #HNRNPUAwareness #RareDisease #RareDiseaseTreatment #Grateful #BetterFuture4U #BF4U

📣 Event Announcement 📣
Join us for a Sunday Funday event supporting Better Future 4 U with the amazing folks at @easyspeakspirits! Mark your calendars for Sunday, October 20 from 10:30 AM - 2 PM at easySpeak Spirits 📍586 Milford Harrington Hwy, Milford, DE.

💜 Family-friendly fun for a great cause! We’ll have:

• A 50/50 raffle
• Silent auction
• Live music
• Delicious food & cocktails
• Football on the screens and hopefully sunshine!

Best of all, a portion of the day’s sales will support Better Future 4 U’s mission to find a treatment for HNRNPU. Plus, Paeyton, Ellie, and their families will be there, excited to see everyone!

Invite your friends and let’s make this day one to remember! A better future for HNRNPU starts with us. 💜

#SundayFunday #BetterFuture4U #HNRNPU #SupportLocal #FamilyEvent #RareDisease #BF4U #BetterFuture4U #RareEpilepsy #Awareness #RareGeneticDisorder

📣 Event Announcement 📣
Join us for a Sunday Funday event supporting Better Future 4 U with the amazing folks at @easyspeakspirits! Mark your calendars for Sunday, October 20 from 10:30 AM - 2 PM at easySpeak Spirits 📍586 Milford Harrington Hwy, Milford, DE.

💜 Family-friendly fun for a great cause! We’ll have:

• A 50/50 raffle
• Silent auction
• Live music
• Delicious food & cocktails
• Football on the screens and hopefully sunshine!

Best of all, a portion of the day’s sales will support Better Future 4 U’s mission to find a treatment for HNRNPU. Plus, Paeyton, Ellie, and their families will be there, excited to see everyone!

Invite your friends and let’s make this day one to remember! A better future for HNRNPU starts with us. 💜

#SundayFunday #BetterFuture4U #HNRNPU #SupportLocal #FamilyEvent #RareDisease #BF4U #BetterFuture4U #RareEpilepsy #Awareness #RareGeneticDisorder

Get Travel Ready 🛩️ Preparing for your HNRNP-RNDD Gene Family Meeting & Scientific Conference Hosted by The Yellow Brick Road Project & The HNRNP Family Foundation

Embark on your journey with confidence. Here are some helpful steps to prepare for your trip to Issaquah, Washington July 28-30:
• Passport & Visa Check
If traveling from outside for the USA, ensure your passport is valid for at least six months beyond your travel dates.
• Health Precautions
Get specific travel advice from your doctor. If you need extra time boarding, or other accommodations, contact your airline to request a D.P.N.A. code to be added to your ticket.
• Itinerary Review
Consider using social stories to prepare your traveler. Arrive to the airport early. Find your gate number on your ticket and utilize airport apps to help navigate, if available.
• Security
For a smoother security check in, consider programs such as TSA Cares, The Hidden Disabilities Sunflower 🌻 Lanyard, or TSA pre-check.
• Travel Insurance
Consider travel insurance and understand your cancellation policies for air travel and hotel stay in case of unexpected emergencies.
• Pack Smart
Remember to pack medications in your carryon as well as activities (such as tablets, stickers, coloring books. etc) and snacks to keep your travelers occupied.
• Local Hospitals 🏥
Seattle Children’s Hospital (18mi from hotel) 4800 Sand Point Way NE, Seattle, WA 98105 Swedish Emergency Room - Issaquah (3mi from hotel) 751 NE Blakley Dr, Issaquah, WA 98029
• Home Preparations
Secure your home by informing a trusted neighbor or setting up a home security system

@hnrnpfamily_foundation @yellowbrickroadproject

Get Travel Ready 🛩️ Preparing for your HNRNP-RNDD Gene Family Meeting & Scientific Conference Hosted by The Yellow Brick Road Project & The HNRNP Family Foundation

Embark on your journey with confidence. Here are some helpful steps to prepare for your trip to Issaquah, Washington July 28-30:
• Passport & Visa Check
If traveling from outside for the USA, ensure your passport is valid for at least six months beyond your travel dates.
• Health Precautions
Get specific travel advice from your doctor. If you need extra time boarding, or other accommodations, contact your airline to request a D.P.N.A. code to be added to your ticket.
• Itinerary Review
Consider using social stories to prepare your traveler. Arrive to the airport early. Find your gate number on your ticket and utilize airport apps to help navigate, if available.
• Security
For a smoother security check in, consider programs such as TSA Cares, The Hidden Disabilities Sunflower 🌻 Lanyard, or TSA pre-check.
• Travel Insurance
Consider travel insurance and understand your cancellation policies for air travel and hotel stay in case of unexpected emergencies.
• Pack Smart
Remember to pack medications in your carryon as well as activities (such as tablets, stickers, coloring books. etc) and snacks to keep your travelers occupied.
• Local Hospitals 🏥
Seattle Children’s Hospital (18mi from hotel) 4800 Sand Point Way NE, Seattle, WA 98105 Swedish Emergency Room - Issaquah (3mi from hotel) 751 NE Blakley Dr, Issaquah, WA 98029
• Home Preparations
Secure your home by informing a trusted neighbor or setting up a home security system

@hnrnpfamily_foundation @yellowbrickroadproject

🌟 Better Future 4 U is thrilled to announce that we have financially sponsored Dr. Meena Balasubramanian’s flights to attend the HNRNP Family Meeting and Scientific Symposium! Dr. Meena is a world expert in HNRNPU. 🎉 This incredible opportunity wouldn’t be possible without your generous donations. 💜

Dr. Meena will provide information on the upcoming zebrafish project our foundation has sponsored, connect with HNRNPU families in attendance, and continue her critical research into HNRNPU. Together, we are making strides towards a brighter future. Thank you for your unwavering support! 🌍💫
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#BetterFuture4U #HNRNPU #RareDisease #Research #Advocacy #Community #Hope #ThankYou #BF4U #SupportScience

🌟 Better Future 4 U is thrilled to announce that we have financially sponsored Dr. Meena Balasubramanian’s flights to attend the HNRNP Family Meeting and Scientific Symposium! Dr. Meena is a world expert in HNRNPU. 🎉 This incredible opportunity wouldn’t be possible without your generous donations. 💜

Dr. Meena will provide information on the upcoming zebrafish project our foundation has sponsored, connect with HNRNPU families in attendance, and continue her critical research into HNRNPU. Together, we are making strides towards a brighter future. Thank you for your unwavering support! 🌍💫
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#BetterFuture4U #HNRNPU #RareDisease #Research #Advocacy #Community #Hope #ThankYou #BF4U #SupportScience

🌟 Share Your HNRNPU Journey 🌟
Your story matters. By sharing your family’s journey with HNRNPU, you can inspire and support others facing similar challenges. Together, we can raise awareness and make a difference in the lives of those affected by this rare neurodevelopmental disorder.
We have created an outline to make sharing your journey that much easier! Visit the link in our bio (under all links) or go to bit.ly/MyHNRNPUStory to check it out. Let’s unite and create a better future! 💜
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#HNRNPU #PatientAdvocacy #ShareYourStory #BetterFuture4U #RareDisease #GeneticDisorder #CommunitySupport #BF4U #Rare #NeurodevelopmentalDisorder

🌟 Share Your HNRNPU Journey 🌟
Your story matters. By sharing your family��’s journey with HNRNPU, you can inspire and support others facing similar challenges. Together, we can raise awareness and make a difference in the lives of those affected by this rare neurodevelopmental disorder.
We have created an outline to make sharing your journey that much easier! Visit the link in our bio (under all links) or go to bit.ly/MyHNRNPUStory to check it out. Let’s unite and create a better future! 💜
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#HNRNPU #PatientAdvocacy #ShareYourStory #BetterFuture4U #RareDisease #GeneticDisorder #CommunitySupport #BF4U #Rare #NeurodevelopmentalDisorder

💜 Ellie is 15 months old and the sunshine of her parents’ lives. She loves giraffes, being in the water, strawberries, and all music. She was born with an extremely rare genetic condition called HNRNPU, but wasn’t diagnosed until she was 13 months old following a very scary 4 month period of seizures that caused her to stop breathing completely. Ellie also has hypotonia, strabismus, and developmental delay as a result of her condition. She has been in physical therapy and feeding/speech therapy with Early Intervention since she was 7 months old. She is followed by 7 specialists and she sleeps with a hospital provided monitor every night that will alarm and alert her parents if she stops breathing or if her heart stops in her sleep. Having the monitor has provided some peace of mind to her parents, but they are still living in a near constant state of fear, just bracing themselves for the next seizure and next hospital stay. Ellie is still too young to know exactly how the condition will affect her continued development as she gets older, but there is a lot of fear and worry for her parents in those unknowns too. If a treatment were available it would be a huge help toward alleviating these stressors and anxieties, while ensuring a better future for Ellie. Her family is very concerned about her development as she ages, which is why finding a treatment now is so critical.

🌟 Let’s help those with HNRNPU by raising awareness, funding research and developing treatments to help families, like Ellie’s, and have hope for a brighter future.

🤩 To share your story, visit bit.ly/MyHNRNPUStory
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#RareDisease #HNRNPU #BetterFuture4U #BF4U #HNRNPUResearch #GenomicResearch #RareWarrior #BF4UFoundation #RareSpotlight #HNRNPUAwareness

💜 Ellie is 15 months old and the sunshine of her parents’ lives. She loves giraffes, being in the water, strawberries, and all music. She was born with an extremely rare genetic condition called HNRNPU, but wasn’t diagnosed until she was 13 months old following a very scary 4 month period of seizures that caused her to stop breathing completely. Ellie also has hypotonia, strabismus, and developmental delay as a result of her condition. She has been in physical therapy and feeding/speech therapy with Early Intervention since she was 7 months old. She is followed by 7 specialists and she sleeps with a hospital provided monitor every night that will alarm and alert her parents if she stops breathing or if her heart stops in her sleep. Having the monitor has provided some peace of mind to her parents, but they are still living in a near constant state of fear, just bracing themselves for the next seizure and next hospital stay. Ellie is still too young to know exactly how the condition will affect her continued development as she gets older, but there is a lot of fear and worry for her parents in those unknowns too. If a treatment were available it would be a huge help toward alleviating these stressors and anxieties, while ensuring a better future for Ellie. Her family is very concerned about her development as she ages, which is why finding a treatment now is so critical.

🌟 Let’s help those with HNRNPU by raising awareness, funding research and developing treatments to help families, like Ellie’s, and have hope for a brighter future.

🤩 To share your story, visit bit.ly/MyHNRNPUStory
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#RareDisease #HNRNPU #BetterFuture4U #BF4U #HNRNPUResearch #GenomicResearch #RareWarrior #BF4UFoundation #RareSpotlight #HNRNPUAwareness

🎉 Big Announcement! 🎉
We are thrilled to share that Better Future 4 U has officially been granted nonprofit 501(c)(3) status! 🌟 This is a significant milestone in our journey towards creating positive change and making a lasting impact in our HNRNPU community.
Achieving this status wouldn’t have been possible without the unwavering support of our incredible team, volunteers, donors, and supporters like YOU! 🙌 Your belief in our mission has propelled us forward and we are deeply grateful for your dedication.
As a 501(c)(3) nonprofit organization, we are now even better equipped to pursue our vision of building a better future for all. Together, we’ll continue to drive meaningful research, empower families, and foster a change for those impacted by HNRNPU.
Thank you for being a part of this incredible journey with us. Let’s continue to work hand in hand towards a Better Future 4 U and for generations to come! 💜
To learn more visit BF4U.org
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#BetterFuture4U #Nonprofit501c3 #CommunityImpact #PositiveChange #HNRNPU #BF4U #RareDisease

🎉 Big Announcement! 🎉
We are thrilled to share that Better Future 4 U has officially been granted nonprofit 501(c)(3) status! 🌟 This is a significant milestone in our journey towards creating positive change and making a lasting impact in our HNRNPU community.
Achieving this status wouldn’t have been possible without the unwavering support of our incredible team, volunteers, donors, and supporters like YOU! 🙌 Your belief in our mission has propelled us forward and we are deeply grateful for your dedication.
As a 501(c)(3) nonprofit organization, we are now even better equipped to pursue our vision of building a better future for all. Together, we’ll continue to drive meaningful research, empower families, and foster a change for those impacted by HNRNPU.
Thank you for being a part of this incredible journey with us. Let’s continue to work hand in hand towards a Better Future 4 U and for generations to come! 💜
To learn more visit BF4U.org
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#BetterFuture4U #Nonprofit501c3 #CommunityImpact #PositiveChange #HNRNPU #BF4U #RareDisease

April 2nd is World Autism Day.
Autism is a developmental disability that affects the way people experience the world. This may include differences in processing senses, thinking, physically moving, communicating, socializing and going about daily living. Roughly 1/3 of those with HNRNPU are also diagnosed with autism.
💜 Spread kindness, empathy and create a more inclusive world every day.
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#worldautismawarenessday #autism #hnrnpu #betterfuture4u #bf4u #hnrnpuresearch

April 2nd is World Autism Day.
Autism is a developmental disability that affects the way people experience the world. This may include differences in processing senses, thinking, physically moving, communicating, socializing and going about daily living. Roughly 1/3 of those with HNRNPU are also diagnosed with autism.
💜 Spread kindness, empathy and create a more inclusive world every day.
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#worldautismawarenessday #autism #hnrnpu #betterfuture4u #bf4u #hnrnpuresearch

This Purple Day, we are sharing Gunnar’s story and the profound impact HNRNPU and epilepsy have had on his life. Please watch, share and donate if you can! Those living with HNRNPU are depending on your help to find a treatment 💜

Visit: https://www.gofundme.com/f/help-support-hnrnpu-research we will also link it in our bio!
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#purpleday #epilepsyawareness #epilepsyawareness💜 #purpledayeveryday #hnrnpu #fundraisingfortreatment #betterfuture4u #bf4u #supportresearch

This Purple Day, we are sharing Gunnar’s story and the profound impact HNRNPU and epilepsy have had on his life. Please watch, share and donate if you can! Those living with HNRNPU are depending on your help to find a treatment 💜

Visit: https://www.gofundme.com/f/help-support-hnrnpu-research we will also link it in our bio!
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#purpleday #epilepsyawareness #epilepsyawareness💜 #purpledayeveryday #hnrnpu #fundraisingfortreatment #betterfuture4u #bf4u #supportresearch

Why purple for epilepsy?
🪻 Lavender is a shade of purple and was chosen to represent the various aspects of living with epilepsy, including isolation, struggle and hope. Purple Day is a global initiative with the aim of raising awareness about epilepsy.
💜 Better Future 4 U encourages people to wear purple today and engage in support for those living with epilepsy.
Epilepsy is very prevalent in individuals with HNRNPU with approximately 95% of patients experiencing seizures. While some treatment options may work, there is no cure for epilepsy.

Did you know…? The choice of purple or lavender to symbolize epilepsy awareness has historical roots and practical associations. Both colors have been linked to epilepsy awareness since ancient times. Vincent Van Gogh reportedly used lavender to ease his seizures, painting with it during the onset of seizures to potentially mitigate their severity. Additionally, the scent of lavender has been reported by many as beneficial in managing seizures due to the calming effect. These historical and practical connections likely contributed to the adoption of purple or lavender as representative colors for epilepsy awareness efforts.
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#purpleday #epilepsyawareness #purpledayaroundtheworld #hnrnpu #hnrnpuawareness #hnrnpustrong #betterfuture4u #bf4u #supportresearch

Why purple for epilepsy?
🪻 Lavender is a shade of purple and was chosen to represent the various aspects of living with epilepsy, including isolation, struggle and hope. Purple Day is a global initiative with the aim of raising awareness about epilepsy.
💜 Better Future 4 U encourages people to wear purple today and engage in support for those living with epilepsy.
Epilepsy is very prevalent in individuals with HNRNPU with approximately 95% of patients experiencing seizures. While some treatment options may work, there is no cure for epilepsy.

Did you know…? The choice of purple or lavender to symbolize epilepsy awareness has historical roots and practical associations. Both colors have been linked to epilepsy awareness since ancient times. Vincent Van Gogh reportedly used lavender to ease his seizures, painting with it during the onset of seizures to potentially mitigate their severity. Additionally, the scent of lavender has been reported by many as beneficial in managing seizures due to the calming effect. These historical and practical connections likely contributed to the adoption of purple or lavender as representative colors for epilepsy awareness efforts.
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#purpleday #epilepsyawareness #purpledayaroundtheworld #hnrnpu #hnrnpuawareness #hnrnpustrong #betterfuture4u #bf4u #supportresearch

March 26th is PURPLE DAY! 💜 Join us to spread epilepsy awareness around the world in three easy steps:
1. Wear purple
2. Share epilepsy support and awareness
3. Tag Us @BetterFuture4U.HNRNPU
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🪻 #purpleday #purpledayaroundtheworld #purpledayforepilepsy #epilepsyawareness #1in26 #hnrnpu #hnrnpuawareness #betterfuture4u #bf4u

March 26th is PURPLE DAY! 💜 Join us to spread epilepsy awareness around the world in three easy steps:
1. Wear purple
2. Share epilepsy support and awareness
3. Tag Us @BetterFuture4U.HNRNPU
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🪻 #purpleday #purpledayaroundtheworld #purpledayforepilepsy #epilepsyawareness #1in26 #hnrnpu #hnrnpuawareness #betterfuture4u #bf4u

Better Future 4 U supports Developmental Disabilities Awareness Month 💜

HNRNPU Numbers
��• Global Developmental Delay 100%
• Abnormal Facial Features 97%
• Seizures 95%
• Intellectual Disability 84%
• Hypotonia 79%
• Neonatal Feeding Difficulties 57%
• Vision Impairment 36%
• Autistic Traits 33%

To learn more visit www.BF4U.org or visit the link in our bio
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#develpmentaldisabilities #ddawarenessmonth #hnrnpu #hnrnpuawareness #betterfuture4u #bf4u #supportresearch #rareresearch #findatreatment

Better Future 4 U supports Developmental Disabilities Awareness Month 💜

HNRNPU Numbers
• Global Developmental Delay 100%
• Abnormal Facial Features 97%
• Seizures 95%
• Intellectual Disability 84%
• Hypotonia 79%
• Neonatal Feeding Difficulties 57%
• Vision Impairment 36%
• Autistic Traits 33%

To learn more visit www.BF4U.org or visit the link in our bio
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#develpmentaldisabilities #ddawarenessmonth #hnrnpu #hnrnpuawareness #betterfuture4u #bf4u #supportresearch #rareresearch #findatreatment

🌟 A HUGE Thank You to Belinda & Rick Carpenter! 🌟
Better Future 4 U is thrilled to express our deepest gratitude to Belinda & Rick for their incredible generosity. Their recent donation of $51,000 has propelled us beyond our wildest expectations! 🎉 With their heartfelt contribution, we’ve officially achieved our first fundraising goal of $100,000! 🙌
This remarkable donation will pave the way for groundbreaking HNRNPU research, bringing us closer to a much-needed treatment for Cedar and those like him!I 💫 Every dollar makes a difference and we’re one step closer to a better future for all. 💜 Thank you, Belinda & Rick, for your unwavering support and belief in our mission. Together, we’re making dreams a reality! 🌟
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#Gratitude #BetterFuture4U #Research #Impact #Generosity #HNRNPU #HNRNPUResearch #RareDisease #CareForRare #BF4U

🌟 A HUGE Thank You to Belinda & Rick Carpenter! 🌟
Better Future 4 U is thrilled to express our deepest gratitude to Belinda & Rick for their incredible generosity. Their recent donation of $51,000 has propelled us beyond our wildest expectations! 🎉 With their heartfelt contribution, we’ve officially achieved our first fundraising goal of $100,000! 🙌
This remarkable donation will pave the way for groundbreaking HNRNPU research, bringing us closer to a much-needed treatment for Cedar and those like him!I 💫 Every dollar makes a difference and we’re one step closer to a better future for all. 💜 Thank you, Belinda & Rick, for your unwavering support and belief in our mission. Together, we’re making dreams a reality! 🌟
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#Gratitude #BetterFuture4U #Research #Impact #Generosity #HNRNPU #HNRNPUResearch #RareDisease #CareForRare #BF4U

Better Future 4 U is a global Patient Advocacy Group. We believe in a future where individuals and families affected by HNRNPU have access to the best care and support, and where a treatment for this rare genetic disorder is found.

Our mission is to promote awareness of HNRNPU and to provide support for individuals and families affected by it. We aim to improve the lives of those impacted by this rare genetic disorder by fundraising for research and treatment, and by providing resources and support to patients and their families.

100% of your donation goes to funding research initiatives that will lead to a treatment. We work directly with the HNRNPU researchers and experts. Please visit www.BF4U.org to learn more!

Better Future 4 U is currently pending nonprofit 501(c)(3) status.
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#hnrnpu #hnrnpuresearch #hnrnpurare #rare #raregeneticdisorder #neurodevelopmentaldisorders #betterfuture4u #bf4u #rarediseaseadvocacy #rarediseasecommunity #rarediseaseday #rarediseaseday2024 #supportresearch

Better Future 4 U is a global Patient Advocacy Group. We believe in a future where individuals and families affected by HNRNPU have access to the best care and support, and where a treatment for this rare genetic disorder is found.

Our mission is to promote awareness of HNRNPU and to provide support for individuals and families affected by it. We aim to improve the lives of those impacted by this rare genetic disorder by fundraising for research and treatment, and by providing resources and support to patients and their families.

100% of your donation goes to funding research initiatives that will lead to a treatment. We work directly with the HNRNPU researchers and experts. Please visit www.BF4U.org to learn more!

Better Future 4 U is currently pending nonprofit 501(c)(3) status.
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#hnrnpu #hnrnpuresearch #hnrnpurare #rare #raregeneticdisorder #neurodevelopmentaldisorders #betterfuture4u #bf4u #rarediseaseadvocacy #rarediseasecommunity #rarediseaseday #rarediseaseday2024 #supportresearch

What is HNRNPU? 🧬 Understanding the HNRNPU gene and its functions:
• HNRNPU is a gene situated on chromosome 1q44 that produces the Heterogeneous Nuclear Ribonucleoprotein U (HNRNPU) protein.
• This protein is a part of the Heterogeneous Nuclear Ribonucleoproteins (HNRNP) group that plays a crucial role in DNA and RNA processing.
• The HNRNPU protein has various functions, including alternative splicing, which involves trimming and reorganizing RNA before it’s translated into a protein.
• The HNRNPU protein has various functions, including alternative splicing, which involves trimming and reorganizing RNA before it’s translated into a protein.
• The gene is expressed in different organs throughout the body, including the brain. However, mutations in the gene can cause epilepsy and neurodevelopmental delays, and it’s noteworthy that almost all cases are not inherited from a parent, but rather occur de novo.

To learn more visit www.BF4U.org
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#hnrnpu #hnrnpuresearch #hnrnpurare #rare #raregeneticdisorder #neurodevelopmentaldisorders #betterfuture4u #bf4u #rarediseaseadvocacy #rarediseasecommunity #rarediseaseday #rarediseaseday2024 #supportresearch

What is HNRNPU? 🧬 Understanding the HNRNPU gene and its functions:
• HNRNPU is a gene situated on chromosome 1q44 that produces the Heterogeneous Nuclear Ribonucleoprotein U (HNRNPU) protein.
• This protein is a part of the Heterogeneous Nuclear Ribonucleoproteins (HNRNP) group that plays a crucial role in DNA and RNA processing.
• The HNRNPU protein has various functions, including alternative splicing, which involves trimming and reorganizing RNA before it’s translated into a protein.
• The HNRNPU protein has various functions, including alternative splicing, which involves trimming and reorganizing RNA before it’s translated into a protein.
• The gene is expressed in different organs throughout the body, including the brain. However, mutations in the gene can cause epilepsy and neurodevelopmental delays, and it’s noteworthy that almost all cases are not inherited from a parent, but rather occur de novo.

To learn more visit www.BF4U.org
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#hnrnpu #hnrnpuresearch #hnrnpurare #rare #raregeneticdisorder #neurodevelopmentaldisorders #betterfuture4u #bf4u #rarediseaseadvocacy #rarediseasecommunity #rarediseaseday #rarediseaseday2024 #supportresearch

🦓 Rare Disease Day is the globally-coordinated movement on rare diseases, working towards equity in social opportunity, healthcare, and access to diagnosis and therapies for people living with a rare disease.

Since its creation in 2008, Rare Disease Day has played a critical part in building an international rare disease community that is multi-disease, global, and diverse– but united in purpose.

Rare Disease Day is observed every year on 28 February (or 29 in leap years)—the rarest day of the year.
Rare Disease Day was set up and is coordinated by EURORDIS and 65+ national alliance patient organisation partners. Rare Disease Day provides an energy and focal point that enables rare diseases advocacy work to progress on the local, national and international levels.
Though Rare Disease Day is patient-led, everyone, including individuals, families, caregivers, healthcare professionals, researchers, clinicians, policy makers, industry representatives and the general public, can participate in raising awareness and taking action today for this vulnerable population who require immediate and urgent attention.

By Sharing your colours via social media, events, illuminating buildings, monuments and homes, by sharing experiences online and with friends, by calling on policy makers and shining the light on people living with a rare disease, collectively we aim to change and improve lives of the 300 million people worldwide.
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#RareDiseaseDay #HNRNPU #HNRNPUstrong #HNRNPUrare #betterfuture4u

🦓 Rare Disease Day is the globally-coordinated movement on rare diseases, working towards equity in social opportunity, healthcare, and access to diagnosis and therapies for people living with a rare disease.

Since its creation in 2008, Rare Disease Day has played a critical part in building an international rare disease community that is multi-disease, global, and diverse– but united in purpose.

Rare Disease Day is observed every year on 28 February (or 29 in leap years)—the rarest day of the year.
Rare Disease Day was set up and is coordinated by EURORDIS and 65+ national alliance patient organisation partners. Rare Disease Day provides an energy and focal point that enables rare diseases advocacy work to progress on the local, national and international levels.
Though Rare Disease Day is patient-led, everyone, including individuals, families, caregivers, healthcare professionals, researchers, clinicians, policy makers, industry representatives and the general public, can participate in raising awareness and taking action today for this vulnerable population who require immediate and urgent attention.

By Sharing your colours via social media, events, illuminating buildings, monuments and homes, by sharing experiences online and with friends, by calling on policy makers and shining the light on people living with a rare disease, collectively we aim to change and improve lives of the 300 million people worldwide.
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#RareDiseaseDay #HNRNPU #HNRNPUstrong #HNRNPUrare #betterfuture4u

🦓 Rare Disease Day 2024 is coming! February 29th is the day to share your rare! Embrace uniqueness and community on Rare Disease Day with a HNRNPU frame. Let’s spread awareness and support for those living with rare diseases 💜
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#HNRNPU #BetterFuture4U #BF4U #RareDiseaseDay #ShareYourRare #ShowYourStripes #RareDiseaseDay2024 #HNRNPU

🦓 Rare Disease Day 2024 is coming! February 29th is the day to share your rare! Embrace uniqueness and community on Rare Disease Day with a HNRNPU frame. Let’s spread awareness and support for those living with rare diseases 💜
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#HNRNPU #BetterFuture4U #BF4U #RareDiseaseDay #ShareYourRare #ShowYourStripes #RareDiseaseDay2024 #HNRNPU

Embarking on a journey of hope for HNRNPU research! 🧬
🔬 Join us as we delve into groundbreaking initiatives across four vital fronts:

🐟 Animal Model: Diving deep into the realm of zebrafish to replicate and advance cell-based studies, paving the way for in vivo breakthroughs.

🔬 Cellular Model: Proof-of-concept. Harnessing the power of HNRNPU patient-derived cells to unravel the mysteries of developmental delays and seizures, with the aim of precision correction through innovative gene therapy.

📊 Natural History: Broadening our understanding through comprehensive clinical evaluations, forging a ‘trial-ready HNRNPU patient cohort’ to expedite potential treatments to clinic.

💊 Drug Repurposing: Exploring new horizons by repurposing FDA-approved drugs, unleashing their potential to reverse phenotypic traits through meticulous testing on patient-derived neurons.

Together, let’s champion progress and ignite hope for those affected by HNRNPU. 💜 To donate visit the link in our bio or Bit.ly/BF4U
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#HNRNPUResearch #RareDisease #FundraisingForRare #HNRNPU #BetterFuture4U #RareResearch #NeurodevelopmentalDisorder #BF4U

Embarking on a journey of hope for HNRNPU research! 🧬
🔬 Join us as we delve into groundbreaking initiatives across four vital fronts:

🐟 Animal Model: Diving deep into the realm of zebrafish to replicate and advance cell-based studies, paving the way for in vivo breakthroughs.

🔬 Cellular Model: Proof-of-concept. Harnessing the power of HNRNPU patient-derived cells to unravel the mysteries of developmental delays and seizures, with the aim of precision correction through innovative gene therapy.

📊 Natural History: Broadening our understanding through comprehensive clinical evaluations, forging a ‘trial-ready HNRNPU patient cohort’ to expedite potential treatments to clinic.

💊 Drug Repurposing: Exploring new horizons by repurposing FDA-approved drugs, unleashing their potential to reverse phenotypic traits through meticulous testing on patient-derived neurons.

Together, let’s champion progress and ignite hope for those affected by HNRNPU. 💜 To donate visit the link in our bio or Bit.ly/BF4U
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#HNRNPUResearch #RareDisease #FundraisingForRare #HNRNPU #BetterFuture4U #RareResearch #NeurodevelopmentalDisorder #BF4U

✨WOW✨ We are amazed by your generosity 💜 THANK YOU! We are ringing in the new year with $36,406.11 in Zeffy donations through our giving campaign and $15,000 in private donations, totaling $51,406.11!
BUT we’re not done yet! We’re a little over half way to our $100,000 goal for our first round of fundraising. What will your donation go towards?
▪️ Research by our world experts
▪️ Help HNRNPU patients better understand their diagnosis
▪️ Progress towards a much needed treatment
🌐 Bit.ly\BF4U
✨ Please consider creating an impact on the lives of those living with HNRNPU. It takes a village and you are in ours. Happy New Year, we cannot wait to see the progress 2024 brings! 🎊
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#HNRNPU #HNRNPUresearch #HNRNPUtreatment #RareDisease #Grateful #2023 #2023goals #2024 #2024goals #RareResearch #RareDiseaseTreatment #cureraredisease #BF4U #BetterFuture4U #BetterFuture4hnrnpU

✨WOW✨ We are amazed by your generosity 💜 THANK YOU! We are ringing in the new year with $36,406.11 in Zeffy donations through our giving campaign and $15,000 in private donations, totaling $51,406.11!
BUT we’re not done yet! We’re a little over half way to our $100,000 goal for our first round of fundraising. What will your donation go towards?
▪️ Research by our world experts
▪️ Help HNRNPU patients better understand their diagnosis
▪️ Progress towards a much needed treatment
🌐 Bit.ly\BF4U
✨ Please consider creating an impact on the lives of those living with HNRNPU. It takes a village and you are in ours. Happy New Year, we cannot wait to see the progress 2024 brings! 🎊
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#HNRNPU #HNRNPUresearch #HNRNPUtreatment #RareDisease #Grateful #2023 #2023goals #2024 #2024goals #RareResearch #RareDiseaseTreatment #cureraredisease #BF4U #BetterFuture4U #BetterFuture4hnrnpU

Grateful for the generosity that brightened our year! 💜 Wishing our incredible HNRNPU families as well as our generous donors health, happiness, and endless joy. Your support is the greatest gift of all.
Bit.ly/Bf4U
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#Grateful #BetterFuture4U #HNRNPU #SupportRare #RareDisease #RareGenetics #HNRNPUresearch #BF4U #SeasonOfThanks #JoyfulGiving #Gratitude #HappyHolidays

Grateful for the generosity that brightened our year! 💜 Wishing our incredible HNRNPU families as well as our generous donors health, happiness, and endless joy. Your support is the greatest gift of all.
Bit.ly/Bf4U
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#Grateful #BetterFuture4U #HNRNPU #SupportRare #RareDisease #RareGenetics #HNRNPUresearch #BF4U #SeasonOfThanks #JoyfulGiving #Gratitude #HappyHolidays

Hope is on the horizon: Tate’s journey to conquer HNRNPU - Raising awareness and fundraising for a rare genetic hope 💜
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#HNRNPU #HNRNPUstory #hnrnpustrong #fundraiseforacause #research #fundresearch #rareepilepsy #raregenetics #betterfuture4u #BF4U

Hope is on the horizon: Tate’s journey to conquer HNRNPU - Raising awareness and fundraising for a rare genetic hope 💜
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#HNRNPU #HNRNPUstory #hnrnpustrong #fundraiseforacause #research #fundresearch #rareepilepsy #raregenetics #betterfuture4u #BF4U

We just made it to our first major milestone $20,000 raised to help continue research for HNRNPU and we could not have done it without your help! 🫶
Every dollar, every share, every awareness post has gotten us here 💜 THANK YOU! We still have more work to do to reach our $100,000 goal and we are so grateful for each and every one of you!
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#HNRNPU #RareResearch #BF4U #HNRNPHrare #Research #HNRNPUresearch #Rare #RareGenes #raregenesmovement #Genetics #empowerrare

We just made it to our first major milestone $20,000 raised to help continue research for HNRNPU and we could not have done it without your help! 🫶
Every dollar, every share, every awareness post has gotten us here 💜 THANK YOU! We still have more work to do to reach our $100,000 goal and we are so grateful for each and every one of you!
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#HNRNPU #RareResearch #BF4U #HNRNPHrare #Research #HNRNPUresearch #Rare #RareGenes #raregenesmovement #Genetics #empowerrare

🌟 The BF4U team is excited to share an introduction and updates from Team HNRNPU at Sheffield University!
💜 A huge thank you to all of the Doctors and Researchers working on HNRNPU!
🧬 Let’s keep their research going! For more info visit the link in bio or www.betterfuture4u.org
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#HNRNPU #HNRNPUresearch #HNRNPUstrong #Rare #RareResearch #BetterFuture4U #tistheseasonforgiving #BF4U #HNRNPUrare #HNRNPUgene #Genetics #Gene #RareDisease

🌟 The BF4U team is excited to share an introduction and updates from Team HNRNPU at Sheffield University!
💜 A huge thank you to all of the Doctors and Researchers working on HNRNPU!
🧬 Let’s keep their research going! For more info visit the link in bio or www.betterfuture4u.org
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#HNRNPU #HNRNPUresearch #HNRNPUstrong #Rare #RareResearch #BetterFuture4U #tistheseasonforgiving #BF4U #HNRNPUrare #HNRNPUgene #Genetics #Gene #RareDisease

🌟 HNRNPU Advisor Spotlight - Dr. Christopher Ricupero, PhD 🌟

Dr. Christopher Ricupero is an Associate Research Scientist at Columbia University Irving Medical Center in New York City. Dr. Ricupero received his PhD in Neuroscience and the central theme to his research is neurodevelopment. He has a special interest in rare neurological and neurogenetic disorders within the HNRNP family. He is currently investigating the underlying mechanisms of HNRNP-related neurodevelopmental disorders by modeling the disorders in a dish using patient specific stem cells and derived neurons. He is also active in the development of therapeutics using gene targeting approaches. Dr. Ricupero is a Scientific Advisory Board member of the HNRNP Family Foundation and member of the Consortium on Neurodevelopmental Studies of Autism Spectrum and Related Disorders.
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#HNRNPU #BetterFuture4U #RareResearch #RareDisease #HNRNPUResearch #NeurologicalDisorders #Colombia #ColombiaUniversity #BF4U #RareResearch

🌟 HNRNPU Advisor Spotlight - Dr. Christopher Ricupero, PhD 🌟

Dr. Christopher Ricupero is an Associate Research Scientist at Columbia University Irving Medical Center in New York City. Dr. Ricupero received his PhD in Neuroscience and the central theme to his research is neurodevelopment. He has a special interest in rare neurological and neurogenetic disorders within the HNRNP family. He is currently investigating the underlying mechanisms of HNRNP-related neurodevelopmental disorders by modeling the disorders in a dish using patient specific stem cells and derived neurons. He is also active in the development of therapeutics using gene targeting approaches. Dr. Ricupero is a Scientific Advisory Board member of the HNRNP Family Foundation and member of the Consortium on Neurodevelopmental Studies of Autism Spectrum and Related Disorders.
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#HNRNPU #BetterFuture4U #RareResearch #RareDisease #HNRNPUResearch #NeurologicalDisorders #Colombia #ColombiaUniversity #BF4U #RareResearch

💜 Your generosity is the light that guides our path! Thanks to your incredible support on Giving Tuesday, we raised over $15,000 for research initiatives. Together, we're making strides in understanding HNRNPU and paving the way for treatment options.
🌟 Let's keep the momentum going to reach our $100,000 goal by year-end. Spread the word, share the love, and let's make a better future for all!
www.BetterFuture4U.org
bit.ly/BF4U
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#BetterFuture4U #GivingTuesdaySuccess #HNRNPUresearch #HNRNPU #SupportResearch #SupportHNRNPU #GivingTuesday #BF4U

💜 Your generosity is the light that guides our path! Thanks to your incredible support on Giving Tuesday, we raised over $15,000 for research initiatives. Together, we're making strides in understanding HNRNPU and paving the way for treatment options.
🌟 Let's keep the momentum going to reach our $100,000 goal by year-end. Spread the word, share the love, and let's make a better future for all!
www.BetterFuture4U.org
bit.ly/BF4U
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#BetterFuture4U #GivingTuesdaySuccess #HNRNPUresearch #HNRNPU #SupportResearch #SupportHNRNPU #GivingTuesday #BF4U

Gratitude in every heartbeat! 💜 Thank you to our incredible donors for their generous contributions to Better Future 4 U
💪 Empower progress with a monthly pledge to Better Future 4 U, fueling ongoing HNRNPU research for a brighter tomorrow
🌟 Check out the link in our bio or visit Zeffy to donate https://www.zeffy.com/en-US/fundraising/a401dc28-9814-4ab1-a0b6-a9f822d8e5bf
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#MonthlyImpact #BetterFuture4U #BF4U #GivingTuesday #Research #HNRNPUresearch #HNRNPU

Gratitude in every heartbeat! 💜 Thank you to our incredible donors for their generous contributions to Better Future 4 U
💪 Empower progress with a monthly pledge to Better Future 4 U, fueling ongoing HNRNPU research for a brighter tomorrow
🌟 Check out the link in our bio or visit Zeffy to donate https://www.zeffy.com/en-US/fundraising/a401dc28-9814-4ab1-a0b6-a9f822d8e5bf
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#MonthlyImpact #BetterFuture4U #BF4U #GivingTuesday #Research #HNRNPUresearch #HNRNPU

🌟 GIVING TUESDAY: Let's Support HNRNPU Research! 🧬💜
This Giving Tuesday, let's come together to make a real difference! We're rallying support for groundbreaking HNRNPU research that has the power to transform lives. Every contribution brings us one step closer to unlocking vital answers.
🔬 Why HNRNPU Research?
HNRNPU plays a crucial role in gene regulation and development. Research in this area has the potential to unravel mysteries and pave the way for new treatments and understanding.
💪 How Can You Help?
Your support matters! Whether big or small, every donation counts. Click the link in our bio to contribute and be a part of this important journey.
🌐 Donate Now: https://www.zeffy.com/en-US/fundraising/a401dc28-9814-4ab1-a0b6-a9f822d8e5bf
📢 Spread the Word!
Tag a friend who cares about making a difference and share this post to your stories. Together, we can amplify our impact and create a wave of support for HNRNPU research.
🙏 Thank you for your generosity! Let's make Giving Tuesday count! 💜
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#GiveForResearch #GivingTuesday #HNRNPUResearch #HNRNPU #Science #Research #BetterFuture4U #BF4U

🌟 GIVING TUESDAY: Let's Support HNRNPU Research! 🧬💜
This Giving Tuesday, let's come together to make a real difference! We're rallying support for groundbreaking HNRNPU research that has the power to transform lives. Every contribution brings us one step closer to unlocking vital answers.
🔬 Why HNRNPU Research?
HNRNPU plays a crucial role in gene regulation and development. Research in this area has the potential to unravel mysteries and pave the way for new treatments and understanding.
💪 How Can You Help?
Your support matters! Whether big or small, every donation counts. Click the link in our bio to contribute and be a part of this important journey.
🌐 Donate Now: https://www.zeffy.com/en-US/fundraising/a401dc28-9814-4ab1-a0b6-a9f822d8e5bf
📢 Spread the Word!
Tag a friend who cares about making a difference and share this post to your stories. Together, we can amplify our impact and create a wave of support for HNRNPU research.
🙏 Thank you for your generosity! Let's make Giving Tuesday count! 💜
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#GiveForResearch #GivingTuesday #HNRNPUResearch #HNRNPU #Science #Research #BetterFuture4U #BF4U

Thankful For You 💜 Better Future 4 U would like to express our gratitude to the entire HNRNPU family, from our loved ones to our outstanding researchers and clinicians. We wish you all a holiday filled with love and good health.
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#HNRNPU #HNRNPUresearch #Rare #RareGenetics #RareFamily #ThanksGiving #GivingThanks #Grateful #Gratitude #Community #Family #Health #BetterFuture4U #BF4U #HNRNPUfamily

Thankful For You 💜 Better Future 4 U would like to express our gratitude to the entire HNRNPU family, from our loved ones to our outstanding researchers and clinicians. We wish you all a holiday filled with love and good health.
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#HNRNPU #HNRNPUresearch #Rare #RareGenetics #RareFamily #ThanksGiving #GivingThanks #Grateful #Gratitude #Community #Family #Health #BetterFuture4U #BF4U #HNRNPUfamily

💜 Better Future 4 U is a nonprofit organization created to support research for HNRNPU.
🌟 OUR MISSION: We believe in a future where individuals and families affected by HNRNPU have access to the best care and support, and where a treatment for this rare genetic disorder is found.
📲 To learn more and to support our cause, visit the link in bio or www.BetterFuture4U.org
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#HNRNPU #HNRNPUawareness #Science #Rare #RareResearch #Research #BF4U #BetterFuture4U #SupportResearch #SupportScience #NonprofitOrganization #GivingTuesday

💜 Better Future 4 U is a nonprofit organization created to support research for HNRNPU.
🌟 OUR MISSION: We believe in a future where individuals and families affected by HNRNPU have access to the best care and support, and where a treatment for this rare genetic disorder is found.
📲 To learn more and to support our cause, visit the link in bio or www.BetterFuture4U.org
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#HNRNPU #HNRNPUawareness #Science #Rare #RareResearch #Research #BF4U #BetterFuture4U #SupportResearch #SupportScience #NonprofitOrganization #GivingTuesday

HNRNPU Spotlight - Ankita
💜 Ankita was born to doting parents, who from the moment they had their first glimpse of her, knew that she was special. Little did they know that in Ankita’s case, she was indeed special - born with a rare genetic mutation called HNRNPU. She was diagnosed in 2018 and is one of the very few kids known to have this. The early days were filled with joy and tiredness but also challenges that came in the form of Torticollis and Hypotonia. She struggled to hit milestones & have control over her gross & fine motor skills. This was followed by seizures and eventually strabismus, developmental delay, and multiple other issues. Ankita’s years since have consisted of hundreds of hospital visits, surgeries, therapies, funny looks, and taunts by strangers, school kids and adults. She has been rejected by swimming academies, basketball coaches, summer camp instructors, and many of her special needs school teachers.

Despite these challenges, Ankita displays a very strong character. She never gives up, is always cheerful, and loving and carries a very optimistic disposition. She loves music, reading, math, food shows and beach vacations. Ankita has to put in mountains of effort to learn what her typical peers do easily and she now swims, throws a 3-pointer and can climb the mission peak in Fremont, CA. Her goal is to become a doctor and help all kids with challenges.
Recently, through the efforts of a few parents, caregivers and well-wishers, there are developments in this domain that offer a glimmer of light & future for kids born with HNRNPU to tame their seizures and handle multiple other challenges. Universities such as Columbia and Sheffield have researchers working with the parents to advance the understanding of this mutation, its effect and potential treatments.
As with all research, the road ahead is long and challenging. It will need monetary support, help, awareness and understanding. It’s a road worth taking and we owe it to kids and individuals like Ankita worldwide.
Hope is a good thing!
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#RareDisease #HNRNPU #BetterFuture4U #BF4U #HNRNPUResearch #GenomicResearch #RareWarrior #BF4UFoundation #RareSpotlight #HNRNPUAwareness

HNRNPU Spotlight - Ankita
💜 Ankita was born to doting parents, who from the moment they had their first glimpse of her, knew that she was special. Little did they know that in Ankita’s case, she was indeed special - born with a rare genetic mutation called HNRNPU. She was diagnosed in 2018 and is one of the very few kids known to have this. The early days were filled with joy and tiredness but also challenges that came in the form of Torticollis and Hypotonia. She struggled to hit milestones & have control over her gross & fine motor skills. This was followed by seizures and eventually strabismus, developmental delay, and multiple other issues. Ankita’s years since have consisted of hundreds of hospital visits, surgeries, therapies, funny looks, and taunts by strangers, school kids and adults. She has been rejected by swimming academies, basketball coaches, summer camp instructors, and many of her special needs school teachers.

Despite these challenges, Ankita displays a very strong character. She never gives up, is always cheerful, and loving and carries a very optimistic disposition. She loves music, reading, math, food shows and beach vacations. Ankita has to put in mountains of effort to learn what her typical peers do easily and she now swims, throws a 3-pointer and can climb the mission peak in Fremont, CA. Her goal is to become a doctor and help all kids with challenges.
Recently, through the efforts of a few parents, caregivers and well-wishers, there are developments in this domain that offer a glimmer of light & future for kids born with HNRNPU to tame their seizures and handle multiple other challenges. Universities such as Columbia and Sheffield have researchers working with the parents to advance the understanding of this mutation, its effect and potential treatments.
As with all research, the road ahead is long and challenging. It will need monetary support, help, awareness and understanding. It’s a road worth taking and we owe it to kids and individuals like Ankita worldwide.
Hope is a good thing!
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#RareDisease #HNRNPU #BetterFuture4U #BF4U #HNRNPUResearch #GenomicResearch #RareWarrior #BF4UFoundation #RareSpotlight #HNRNPUAwareness

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