CASK Gene Awareness Day is on July 15th. It is the day we celebrate our CASK warriors and remember our CASK warrior angels.
Don’t forget, there are four charities working together to raise funds for CASK research. These are:
Please watch and share our videos and posts for CASK Gene Awareness Day.
Why do we have an awareness day?
- It’s the time for the community to come together in solidarity and hope.
- It’s the opportunity to spread awareness amongst our friends and families to improve understanding of the disease and spread compassion.
- It’s an opportunity to spread awareness of the disabling symptoms like infantile spasms.
Why do we need awareness?
- We need people to realise that this disease exists and how it impacts our children and families.
- We need the world to know that we want treatments.
- We want scientists to know we’re ready and waiting to be researched.
What can you do on CASK Gene Awareness Day?
- Share your personalised leaflets (download from here) with friends, family and clinicians and teachers.
- Tell everyone about the CASK Coalition and how we’re working together to raise funds for life-changing research.
- Sign up to our newsletters and social media sites and share and like our posts and youtube channel.
- Take part in Race for Research or hold your own fundraiser like a coffee morning.
Jen and Krista are currently raising Tristian’s five year old sister Alexandria and Lucian (Tristian’s twin brother age 3). They live in Palm Coast Florida. This is their story:
“We all love Tristian and talk about him often. Alexandria loves to talk about the day she can see her little brother once again. Tristian was an old soul. Just by looking into his big beautiful eyes you could tell he was wise. Krista and Tristian had a remarkable bond just by the way he looked at her. If there was something going wrong with Tristian, Krista could always tell what he needed just by looking at his eyes. It was remarkable. It was almost as if he knew what was going on and he had a mission.”
“The unconditional love he had for his siblings was also notable as he would look at them with such love in his heart. We remember when we found out about the areas affected in his brain and the doctors told us that the only unaffected areas were his memories and his emotions.”
“When we found out that Tristian was going to pass, donating his organs for research was never a hard decision. We knew we couldn’t keep him, so giving this gift to the medical community was what he was here for. Advancing CASK research means that other parents who are or may end up in our shoes have better options for quality of life as well as giving their child the ability to live. That is what we want! We want these kids to be able to live their lives and at the best level possible.”
Jen and Krista are fierce advocates for CASK gene awareness:
“Doctors do not know it all. In this case they knew very little, but it does not have to stay that way. Parents are the leaders in this research, because without the sacrifices that our CASK kids and parents make to get the information out there, research would not already be this far. We just have to keep fighting, keep learning, keep advocating, and no matter what, even if CASK warriors become CASK angels, the fight never stops until there is a cure! We must keep going, we must keep fighting!”
“Our hopes are ultimately for a cure; but also early detection for early intervention, for it to be recognized as a significant disease that matters and is affecting more families every single day.”
Jen and Krista’s advice to other parents:
“First off, we know not everyone can do what we did and that’s ok. There are other ways to help advancing research by participating in the surveys, keeping the conversation going, raise awareness… If we raise our voices together one day we will be heard!
“We would like to see Tristian and all CASK angels remembered as CASK Warrior Angels! They all fought an amazing fight. They are all truly the faces of our CASK family that may have lost their battles, but have given their parents the strength to continue to live on and fight for those still fighting. One day we hope that we will not have to add any more beautiful and handsome CASK kids to our warrior page, but their legacy will live on. They will never be forgotten.”