Batten Disease

Batten Disease International Alliance is a Global Organisation Representing Patients, Research and Advocacy for Children with Batten Disease

[Batten Disease @BattenDisease]

The BDIA, Batten Disease International Allinance is re-starting. Collaboration is already underway to unite each #BATTENDISEASE organisation in #Europe and then reach out across the world

[PᴀʟᴍBᴇᴀᴄʜCMA👨🏻‍⚕️🙏🏽👩🏾‍⚕️ @PalmBeachCMA]

#InfantileBattenDisease #BattenDisease @BattenDisease
#Crispr #geneediting
https://t.co/E1p4U8ADnu

[Kathleen L. Plothow, Peru City Council~Indiana @LPlothow]

#battensdisease #teampitner @BattenDisease @BattenDiseaseuk @PeruSmall @PeruPd

[Celeste Karch @karchlab]

TPC2 rescues lysosomal storage in mucolipidosis type IV, Niemann–Pick type C1, and Batten disease ⁦@PaquetLab⁩ ⁦@BattenDisease⁩ https://t.co/tsRSMeULtp

[Tony Heffernan a DAD @BeeForBattens]

11 years ago our daughter Saoirse passed away in our arms, the pain never eases & increased when Liam joined her 3 yrs later, both forever #5

Saoirse was the essence of happiness and joy, she loved life.

Tell your loved ones how much they mean to you today!

[⪩༏⪨ Ajinder kaur Gidda ⪩༏⪨ @AjGidda]

@BattenDiseaseuk #battenawareness @BattenDisease #thankyou I lost my precious princess to this disease, happy to support if I can. 💞💞

[IBFG @ibfg_es]

#IBFG_Paper by Dr. @bolanosjuanp Lab (@usal & @IBSAL_IIS) in collaboration with Dr. Medina Lab (@Tigem_Telethon) in @EmboMolMed, on the beneficial effect of tamoxifen in two models of @BattenDisease. A joint work funded by the EU H2020 @BAT_Cure consortium.

[Tony Heffernan a DAD @BeeForBattens]

Due to circumstances beyond our control, Mary & I are heartbroken to state that we have taken the decision to step away from the Saoirse Foundation.
We set up the charity in March'10 as a family of 4 and now we depart as a family of 4 with Saoirse & Liam tucked up in our hearts.

[David McGovern @davidmcgovmusic]

Thank you to everyone that has listened to my charity single over on YouTube, it really does mean a lot..

If you haven't then please give it a listen.

https://t.co/Q79keBJ05z…

@BattenDiseaseuk @BattenDisease @INXS
#battenawareness #inxs #newcastleupontyne @Andrew_Farriss

[Batten Disease @BattenDisease]

“A mother understands what a child does not say.”
Thank you Queen #Bee Taylor Rose and Mum Mary Keating for this message. Our moms are superheroes but we usually don’t tell them enough how much they’re appreciated. Happy #MothersDay to all our #BUMBALEance AMAZING Mothers!

[Batten Disease @BattenDisease]

Thank you King #Bee Cormac Byrne for this message to all of our #BUMBLEance Mothers out there. May you be treated like royalty every day specially #MothersDay. Some of our #King and #QueenBee's today look down from Heaven - we wish those Moms an extra special day.

[Batten Disease @BattenDisease]

We celebrate Our King and Queen #Bees, Patients, Families and Carers around the world that are affected by rare diseases today on #RareDiseaseDay!
RARE is Many
RARE is Strong
RARE is Proud

[Batten Disease @BattenDisease]

Run Walk or Roll 180km in March
Our average Trip with our King and Queen #Bees is 180km. We challenge you to raise €180. Which will pay for a #Bee Journey 🐝

Sign up here https://t.co/AkDwijp2mN
Fundraise on https://t.co/q8BuW99Ohf
#charity #support #community #Run #Walk

[Batten Disease @BattenDisease]

A special THROWBACK THURSDAY today as we celebrate the very brave original King Bee Liam Heffernan. In 2011 when he became the world's youngest ever child to undergo a pioneering brain surgery, at the Weill Cornell Medical Centre in New York. #BattenDisease #ThrowbackThursday

[Batten Disease @BattenDisease]

Despite the weather we had a busy day in #BUMBLEance. Driver Áine collected King #Bee Adam very early to bring him to @CMRF_Crumlin They had fun on the long journey. Then Áine met Hazel and her Dad. Hazel wants to be a Paramedic & to go in BUMBLEance! https://t.co/sMEOOyeki8

[Tony Heffernan a DAD @BeeForBattens]

Great to see the @BattenDiseaseuk logo at the halfway line for the #FACup #MarineFC v #Spurs and @23foundationLes
@BattenDisease

[Batten Disease @BattenDisease]

Likewise

[BDSRA Foundation @BDSRA]

@BattenDisease We can't wait to reconnect with everyone!

[Batten Disease @BattenDisease]

@BeeForBattens

[Batten Disease @BattenDisease]

"Amelia was diagnosed in 2010 with Batten Disease. She was a very happy child. She loved watching Barney the dinosaur, listening to music and she really loved spending time with people. She gave us a lot of strength love and positive energy"#battensday2020
https://t.co/hHnNfaO9va

[Batten Disease @BattenDisease]

On #battenday2020 we remember Abbey. Her Mum & Dad, Linda & John say "Abbey lit up our world. She was a girl in a rush to live her life. Her love for all things fast and thrilling entertained us constantly. She adored her family and friends especially her little sister Kyra" ❤️