Mission: eradicate Batten disease.
Joined February 2009
- Tweets1.1K
- Following1.4K
- Followers846
- Likes652
Beyond Batten retweeted
Share your opinion on Batten disease research needs for all CLN types by completing an anonymous survey. All Batten community members are encouraged to respond. Your feedback will help inform and drive research priorities and investment in Batten.
🔗 ow.ly/Xzml50RKIng
Beyond Batten retweeted
Fulham for all. 🤍
ALT Captain Bernd Leno leads the Fulham side out ahead of the game against Tottenham, next to a young mascot using a white cane.
Beyond Batten retweeted
Thank you @FulhamFC for letting our son William accompany @Bernd_Leno onto the pitch for the big win against Spurs. The @FulhamFCFound does tremendous work for disabled children, allowing them to live their best lives. More on Will's condition here: beyondbatten.org/iron-will/
Beyond Batten retweeted
Join @form_bio + @BeyondBatten for a discussion on the promise and challenges of rare disease R+D on @rarediseaseday 2023.🔬
@ClaireAldridge2 and Craig Benson will connect live Feb 28 @ 12:00pm CT on some considerations for this challenging environment. hubs.li/Q01CkHvS0
Beyond Batten retweeted
Not only did he meet his huge goal, but young Garland Benson surpassed it! After raising more than a million dollars for @BeyondBatten to help his sister, Garland joins Taylor for our Super Cool Kids Show to share more about the mission. bit.ly/325TInC
Beyond Batten retweeted
I take care of kids with serious neurologic conditions.
Every single day I make parents cry.
I tell them their child has
cerebral palsy
brain tumor
epilepsy
stroke
leukodystrophy
multiple sclerosis
brain malformation.
So every single day I need find the laughter too.
Beyond Batten retweeted
Drew was diagnosed with juvenile Batten disease just over 2 years ago. Help us keep hope alive by spreading awareness ♥️ #battenday2019 #battenawareness instagram.com/p/ByeWrNwApH_/…
Beyond Batten retweeted
June 9 is International Batten Disease Awareness Day! Batten disease is one of the most common lysosomal storage diseases & primarily affects children. Join us in standing with @BDSRA for #BattenDay2019 and learn more about Batten disease: bdsra.org/
Beyond Batten retweeted
My man Garland wants to thank everyone that has donated so far! We have raised over $275k since we started working together! Everyone please continue to help and share his mission so we can save his sister! @BeyondBatten
Beyond Batten retweeted
Meeting @JoeSikorraShow & Lori's sons John & Ben was unforgettable for me. Such courage & optimism in the face of unthinkable adversity! I can't wait to read more about this inspirational family. ALL profits to research for beyondbatten.org
#Peace 🙏 xitter.cf/ed_solomon/status/9913…
Beyond Batten retweeted
Brum kids with mental health problems face some of longest waits in UK birminghammail.co.uk/news/mi…
Beyond Batten retweeted
It's nothing to be ashamed of 💚 #ChildrensMentalHealthWeek ow.ly/Mt2K30id5tv
Beyond Batten retweeted
It's time to #RockTheBald this 2018!:) There's plenty of opportunities to help kids with cancer! Already signed up? Encourage a friend to #RockTheBald with you! bit.ly/2C2cnTH
Beyond Batten retweeted
RT & put a smile on someone's face with a kind gesture - donate to lifesaving childhood cancer research in their honor: bit.ly/2ASEUeZ
Beyond Batten retweeted
February is National Children’s Dental Health Month! To celebrate we are going around to different schools/daycares to bring awareness and to teach how important it is to have good dental hygiene! #ChildrensDentalHealthMonth #pediatricdentistryofbrandon
Beyond Batten retweeted
What is parenting if not an exercise in eating your own words? nyer.cm/b6haS4u
Beyond Batten retweeted
This is parenting done right xitter.cf/Car/status/82277598367…