A new Peer Mentor Program is now available for bereaved parents in Australia. If you are bereaved & want to contribute to parents whose children died from a #childhooddementia condition, we invite you to this info session on Wed 26 Jun, 10.45am AEST:
bit.ly/3yClGwc
It may look like Angelina is beating the odds with #laforadisease but she is still having natural progression
No child should suffer like this. If you can help give us a voice, please reach out to me. ❤️ Niki (Ange's mum)
#childhooddementia
We love Renee's intro to her kids. She's one of the parents raising awareness to create change. Sadly, Hudson, Holly and Austin all have #childhooddementia caused by Niemann-Pick disease type C. You can see Renee’s full interview here: bit.ly/3SuyYRz
I am very excited to be attending my first interstate symposium in sydney. #childhooddementia #neuroscience #medicalresearch #researchopportunities
They’re all terminal. They all progressively rob kids of their cognitive and physical abilities. Bringing these disorders together makes them impossible to ignore. You can see a stationary list here: bit.ly/3uHAJmN #rarediseaseday #childhooddementia
#makeoverday 💜 Ange has gone purple or should i say violet #purplehair #dreamitpossible #laforadiseaseawareness Chelsea's Hope Lafora Children Research Fund Rare Disease Day #rarediseaseawareness #rarediseaseday #childhooddementia
#LaforaDisease is a neurodegenerative #RareDisease affecting children. Symptoms onset around puberty & include #Epilepsy , #ChildhoodDementia , ataxia & difficulty talking/walking/eating. It's genetic & currently terminal. But we have #Hope for a cure! 💜
Ange is still having so much fun at Ayah Manly for respite. So thankful to come here for fun and a good rest #lifelimitingconditions #laforadisease @laforainitiative Chelsea's Hope Lafora Children Research Fund #childhooddementia #rarediseaseawareness
We're seeking a new Education Lead to run our Education Projects and Community of Practice. Pleas share with anyone you think make be interested! childhooddementia.org/join-us#job #childhooddementia #education
It’s hard to think about #palliativecare for kids, right? But parents shared they wished they'd found it earlier. These quotes are from our report ‘We don’t fit’ on families’ experiences with Australia's health care & support services: bit.ly/3MHXifV #childhooddementia
Find a cure for Ange and all the other kids around the world this October 1st & the whole month. Help us #fightlafora disease by spreading awareness or donate today chelseashope.org Chelsea's Hope Lafora Children Research Fund #laforadisease #childhooddementia #epilepsyawareness #donate
This is Mark Butler MP, Australia’s Federal Minister for Health and Aged Care, inviting families to take part in important new research. The purpose is to learn about the broad impacts of childhood dementia.
More information is here: bit.ly/3vSLh2S
#childhooddementia
This is Angelina (centre) who has childhood dementia, her mum Niki (left), and our CEO Megan (right) after meeting today with the Honourable Anne Stanley MP, who spent time to really understand the urgent need for change. #advocacy #childhooddementia Anne Stanley MP
💬 Did you know that Lafora disease symptoms include childhood dementia?
It is devastating to see in children.
#FactFriday #FridayFact #DidYouKnow #Educate #Dementia #ChildhoodDementia #LaforaDisease #RareDisease Awareness #ChelseasHope #RareDisease #PatientCommunity #RareAsOne
Can you help us reach families about this important research? Researchers at UNSW and Sydney Children's Hospitals Network are seeking parents / primary carers for this important research. More information is here: childhooddementia.org/news/insight-r…
#research #childhooddementia
We invite Western Australian families impacted by #childhooddementia to take part in this special #consultation in Perth on 27 March. The focus: experiences accessing health care and support services. bit.ly/49Us8fX #childhooddementia #listening #longtable