We are excited to officially kick off the fourth annual KCNQ2 Awareness Week! This event is a virtual event aimed at raising awareness, education, and advocacy for the international community affected by KCNQ2 Epilepsy.
We have come so far in the past few years from a small community of passionate families to a vibrant community driving important precision medicine initiatives for our uncommon disease. In the recent past, we have helped establish an international collaboration collecting and curating variant data, sponsored mouse model research at the leading lab in the world, moved into testing existing compounds against human cell models with partners and greatly expanded academic research efforts and pharmaceutical company interest through our annual summit.
KCNQ2 Cure Alliance established KCNQ2 Awareness Week in 2015 as another important platform to elevate the message of need and hope for everyone touched by the condition.
Much remains to be done and relies on the contributions of the entire community.
How to help? The three main areas for everyone to help are awareness, support and advocacy.
Help spread the word through social media: share our Facebook posts, tweet and Instagram to get the message trending. Hashtags #kcnq2strong #kcnq2cure. You can also reach out to your neurologists, therapists and other specialists to make sure they are familiar with KCNQ2 and can identify additional cases when they present.
Support the Natural History Study
Become involved and help to support an international consortium working on the natural history study of KCNQ2 Epilepsy. This multiyear study led by Boston Children’s Hospital is aimed at presenting clinical data that is critical for new therapeutic drug development and to help ensure FDA trials for new treatments. We will be reaching out to families to enroll in the study; this is a stepping-stone to clinical trial enrollment for emerging treatments. Regional activity is so important to make this effort personal to each individual affected family – if you would like to sponsor or partner with us for an individual child please reach out to Contact Us or you are also welcome to donate directly and sponsor based on the study to Donate. We are happy to collaborate on a campaign specific to an affected family.
The only currently available drug on the market specifically targeting the potassium channel is Potiga (also know as Ezogabine and Retigabine) which is planned to be discontinued at the end of June 2017. Largely because of commercial concerns, GlaxoSmithKline has provided notice of discontinuation. KCNQ2 Cure Alliance has been actively working to enable continued availability of Potiga until other alternatives are available. Calling or writing your local Senate or Congress member can help in this effort. If you would like help on the messaging, please let us know.
We are here to support any other activities you would like to initiate during Awareness Week and beyond!
KCNQ2 Global Awareness Tool Kit
Promote KCNQ2 Cure Awareness Week, the first full week of March, on Social Media
Facebook, Twitter, Instagram, LinkedIn, and other social media networks are a great way to spread awareness about KCNQ2 Epilepsy. By telling your story to your friends and family, help eliminate stigma around special needs, and most importantly, help raise awareness about KCNQ2 symptoms, and available treatments. During KCNQ2 Awareness Week, there will be a number of ways for you to get involved in the campaign online:
Simply copy/paste the following tweet suggestions to your Twitter account to help increase awareness about KCNQ2 Epilepsy among all your Twitter followers.
For Individuals, Organizations and Governmental Agencies
1. March 1-7 is KCNQ2 Epilepsy Awareness Week. KCNQ2 is a rare genetic condition causing seizures. Join the fight at KCNQ2cure.org #kcnq2
2. KCNQ2 Epilepsy Awareness Week is March 1-7. There is no cure for KCNQ2 Epilepsy–yet. Join the fight at KCNQ2cure.org #kcnq2
3. KCNQ2 Epilepsy Awareness Week is March 1-7. Please help spread the word with a RT and join the fight at KCNQ2cure.org #kcnq2 #KCNQ2cure
Sample Facebook Posts.
Simply copy/paste the following text examples to your Facebook wall to help increase awareness about KCNQ2 Epilepsy among all your Facebook friends and followers.
1. March 1-7 is KCNQ2 Epilepsy Awareness Week. KCNQ2 EIEE causes seizures, intellectual disabilities, and gross motor delays. There is no cure, but research is helping find new and better treatments. Please share to show your support of KCNQ2cure.org
2. March 1-7 is KCNQ2 Epilepsy Awareness Week. [Name] has KCNQ2 Epilepsy and is hoping for a better future for everyone affected by the disorder. KCNQ2 is a devastating genetic disease which causes seizures and intellectual delay. Please support by sharing this post to help spread awareness. KCNQ2cure.org
3. Please help fight KCNQ2 Epilepsy on March 1-7 – KCNQ2 Epilepsy Awareness Week Simply share this post and ask your friends to visit KCNQ2cure.org
For Organizations and Governmental Agencies
1. March 1-7 is KCNQ2 Epilepsy Awareness Week. [Your organization name] is proud to be a partner in the fight against KCNQ2 Epilepsy a devastating genetic disease. Find out more at KCNQ2cure.org
2. [Your organization name] is proud to partner in the fight against KCNQ2 Epilepsy by helping mark KCNQ2 Epilepsy Awareness Week on March 1-7. KCNQ2 Epilepsy is a rare genetic disease that causes seizures, intellectual disabilities, and gross motor delays. Help us increase awareness by visiting KCNQ2cure.org