π March 26 β Epilepsy Awareness Day π
Today, we stand in support of all those living with epilepsy, especially the children and families affected by WWOX-related syndromes.
#EpilepsyAwareness#PurpleDay#WWOX#raredisease#Woree
π§‘ February 16th is International WWOX Awareness Day π§‘
Today we come together to raise awareness for WWOX-related disorders and to honour the incredible strength of the children and families affected worldwide.
Help us spread awareness by sharing this post today.
THANK YOU!
Each and everyone of you who supported our February campaign WALKS for WWOX.
Together we raised a total of:
$32,455.14
Your generosity will help us to continue to search for effective treatments for our children's disease.
#wwox
π§‘FUNDRAISER UPDATE π
As of today we have raised a total of $16.675
This puts us at a 13% of our target amount of $125.000.
Can you help us reach our goal?
US Dollars campaign:
https://t.co/2VxmnrGtWi
International Currencies:
https://t.co/HbhomvySrU
WALKS FOR WWOX 2024 FUNDRAISER
Join us and walk 16 miles in the month February!
Walk, share and donate for a better future for children living with WWOX diseases
TO DONATE IN US DOLLARS
https://t.co/2VxmnrGtWi
TO DONATE IN OTHER CURRENCIES
https://t.co/HbhomvySrU
#wwox
Probably Genetic has recently launched a no-cost genetic testing program for individuals with seizure disorders. Testing only requires a saliva sample collected at home.
Apply to see if you are eligible here:
https://t.co/lQgh9q3yEW
It has been a very difficult season for our community as we have lost several warriors in a short period of time
They will never be forgotten, and in their memory we will continue to fight for a cure, one that will save lives.
Rest in Peace Little Warriors
#wwox#fightforacure
Norway, Czech Republic, Georgia, Malta, Mexico, Spain, Turkey, Israel 2
Argentina, Bahrain, Canada, Chile, Netherlands, Philippines, Romania, Russia, Saudi Arabia, Serbia, South Africa, UAE, New Caledonia, NZ, Bosnia, Slovenia, El Salvador 1
Undisclosed 7
Total cases: 139
Do you know what WWOX means? It is actually not the name of the disease our children battle daily, but the name of the gene that when mutated causes the disease.
Learn more:
https://t.co/ZVWuyYvsj1
#wwox#wwoxday#raredisease#rareepilepsy
βοΈ You can now join our efforts to advance the research to find a cure for WWOX-related diseases. βοΈ
Hereβs list of the different ways you can participate as a parent or caregiver.
#wwox#raredisease#epilepsy#research#genetherapy
https://t.co/4tnt6YUAmg
π ATTENTION FAMILIES AFFECTED BY WWOX RELATED DISEASESπ
We are looking for families to join a survey research study to gather disease burden feedback.
If you are interested in joining the study please email:
[email protected]#wwox#rareepilepsy#raredisease