Juju and Friends CLN2 Warrior Foundation

Juju and Friends CLN2 Warrior Foundation mission objective is to fund research for the development of gene therapies for CLN2 and soon to come Support groups.

[Juju and Friends CLN2 Warrior Foundation @JujuandFriends]

It's a tough time as our two children bravely battle rare diseases. We've up a GoFundMe to help cover their medical needs. Your support would mean the world to us!  GoFundMe Link](https://t.co/5Ycgq1fHkH) Venmo Link](https://t.co/DrlK2raheP)
Thank you for your kindness,

[Rare & Ready Coalition @rare_ready]

Cristina started @JujuandFriends for her son and to provide support for those living with #BattenDisease. Watch her heart touching story and share your journey at https://t.co/8vPtnm6Lf5. #RareDisease

[Juju and Friends CLN2 Warrior Foundation @JujuandFriends]

📢 Exciting News! 🎉 I am thrilled to share my first Batten Disease News Column! 📰✨ It's an incredible opportunity for me to raise awareness and provide valuable insights about this rare disease.
Link to my column is below:
https://t.co/qSxlp338oZ

#BattenDiseaseAwareness

[Juju and Friends CLN2 Warrior Foundation @JujuandFriends]

@GagavProject @BDSRA Agreed unfair unethical

[Juju and Friends CLN2 Warrior Foundation @JujuandFriends]

@Batten_PSDL @jclinicalinvest @keigotakahashi6 @HemanthNelvagal @WUSTLmed @WUSTLPeds @REGENXBIO @noahs_hope1 @BDSRA This is amazing

[Cristina Vargas @CristinaRosa89]

💙🦓💙🦓💙🦓💙🦓💙🦓💙🦓💙🦓💙🦓
#rarediseaseawareness #advocatelikeamother #bravebattenwarrior #jujusmission #fightingforcln2 #advocacymatters #weareallunique #JujusJourney 💙🦓💙🦓💙🦓💙🦓💙🦓💙🦓💙🦓💙🦓💙

[BDSRA Foundation @BDSRA]

We ❤️ NY! Thanks to BDSRA Board Treasurer Fred Surrey and NY State Senator @senatorlanza, a resolution was signed to declare June 9 as Batten Disease Awareness Day in New York! BDSRA expresses its gratitude to the Surrey family and Senator Lanza.

🔗 https://t.co/yHYWoEqKxn

[Jonathan Cooper @Batten_PSDL]

On a significant CLN2 disease anniversary I'm delighted to see In-press preview of our CLN2 seizure & gene therapy study appear @jclinicalinvest https://t.co/IjmpmJux1h Thanks to funders & fantastic work by @keigotakahashi6 @HemanthNelvagal @REGENXBIO @WUSTLmed #battendisease

[Juju and Friends CLN2 Warrior Foundation @JujuandFriends]

@rare_ready @US_FDA Thank you so much @rare_ready I’m
Honored to a part of your coalition and also extremely grateful to participate in the upcoming meeting with the @US_FDA

[Juju and Friends CLN2 Warrior Foundation @JujuandFriends]

Date: April 27, 2023
Time: 12:00 PM - 4:30 PM ET

Please join me during this meeting, I am scheduled to speak at 1:50 pm EST.

Free public meeting: https://t.co/L44KT1BJqW

💙🦓💙🦓💙🦓💙🦓💙🦓💙🦓💙🦓💙🦓
#rarediseaseawareness #advocatelikeamother #bravebattenwarrior 💙🦓💙

[Juju and Friends CLN2 Warrior Foundation @JujuandFriends]

I am honored to be added as a speaker on behalf of Juju and Friends CLN2 Warrior Foundation, for the @US_FDA CBER OTP Public Listening Meeting — Capturing Post-Approval Safety and Efficacy Data on Cell and Gene Therapy Products.
4/27/2023 12-4:30

[Cristina Vargas @CristinaRosa89]

My strong boy has been featured in Upstate Health. He’s a warrior and makes me proud to be his mom. 💙🦓💙🦓💙🦓💙🦓💙🦓💙🦓💙🦓💙🦓
#🦓💙🦓💙🦓💙🦓💙🦓💙🦓💙🦓💙

https://t.co/V6hZl7q7QO

[Juju and Friends CLN2 Warrior Foundation @JujuandFriends]

@rare_ready Much love to you guys as well!!❤️❤️❤️

[Juju and Friends CLN2 Warrior Foundation @JujuandFriends]

Join us at @FDACBER ’s annual patient engagement workshop on 4/13 to hear inspiring stories from patients, caregivers & advocates who’ve navigated gene therapy clinical trials and learn about the risks & benefits of these studies. Register now: https://t.co/1moFH14qOK #RegenMedEd

[Juju and Friends CLN2 Warrior Foundation @JujuandFriends]

I am so humbly honored to be affiliated with @rare_ready 💙🦓💙🦓💙🦓💙🦓💙🦓💙🦓💙🦓💙🦓
#rarediseaseawareness #advocatelikeamother #bravebattenwarrior #jujusmission #fightingforcln2 #advocacymatters #weareallunique #JujusJourney 💙🦓💙🦓💙🦓💙🦓💙🦓💙🦓💙🦓💙🦓💙

[Rare & Ready Coalition @rare_ready]

Cristina started @JujuandFriends for her son and to provide support for those living with #BattenDisease. Watch her heart touching story and share your journey at https://t.co/8vPtnm7j4D. #RareDisease

[Juju and Friends CLN2 Warrior Foundation @JujuandFriends]

@rare_ready Thank you so much for sharing this! I’m honored to be affiliated with @rare_ready coalition! 🙏❤️

[Jen VanHoutan @FarnieVanHoutan]

Noah & Laine's painting, by Dan Lake, was featured in NYC’s Times Square! This represents our global rare community, families, PAGs, researchers & physicians who work so hard for simple improvements for a better quality of life for those living with Rare! #BattenDisease

[Juju and Friends CLN2 Warrior Foundation @JujuandFriends]

Come check us out at Rare Disease Day. #RareDiseaseDay #UMNResearch - via #Whova event app

[Rare & Ready Coalition @rare_ready]

“Supporting the development and evaluation of new treatments for rare diseases is a key priority for the FDA.” Thanks @US_FDA!

[Rare Disease Day @rarediseaseday]

👐 Happy Rare Disease Month from @ACHSEeV

Around #RareDiseaseDay on 28 February, there will be many events in Germany. @ACHSEeV  Rare Diseases Germany is calling out again to #ShareYourColours for #RareDiseases #Awareness #RareIsMany

➡️ https://t.co/Qeev9ROijq