In my life, you are the sun that never fades
and the moon that never wanes.
Shine on, my child.
-unknown
COMING UP...
ANNOUNCEMENTS
11 year-old Will interviews CASK mother Kim Pullium for his Faith In Aciton school project
This fundraiser is the inspiration of Will Speece for his school Lenten 'Faith in Action' project. In honor of a dear family friend, Shea Pulliam, Will is raising awareness about CASK disorders and raising funds to support Project CASK, a nonprofit advancing the development of treatments for CASK disorders.
Will, is a 5th grade student at St. Ignatius Catholic School in Meridian, Idaho.
Each year, he participates in a 'Faith in Action' project to learn how he can make a difference in the his community and the world around him. His goal is to bring awareness about CASK disorder as well as raise funds to support for the Project CASK organization in its efforts to find a cure.
VISION
Project CASK believes in a world free of the life limitations and debilitating effects of CASK gene disorders.
MISSION
To accelerate breakthroughs in research to develop treatments and a cure for CASK gene disorders.
VALUES
Collaboration. Transparency. Urgency.
Thank you for supporting
our children and our mission
With heartfelt gratitude, we thank you all for helping realize a promising future for our children, bigs and littles!
All CASK kids are worthy of healthy, vibrant lives. Through your generous gifts of time, art, sharing and giving, we are well on our way to accelerating research breakthroughs to treat and cure CASK gene disorders.
The Ultra Rare Collection campaign raised an amazing $61,196!
Much love and gratitude. The Project CASK Team
LEARN ABOUT OUR CASK RESEARCH PROCESS
Project CASK is an innovative, parent-led non profit working urgently to improve the lives of people affected by CASK gene disorders by driving breakthroughs for treatments and a cure.
OUR WHY BEHIND PROJECT CASK
The parents behind Project CASK feel a strong sense of urgency to expand and accelerate research into treatment options for CASK gene related disorders. Integrating the learning from the rare disease community who has walked this path before us, we have elaborated an approach focused on speed, safety and efficacy.
OUR STRATEGY TO FIND TREATMENTS AND A CURE FOR CASK
Our strategy - characterized by continuous, multidisciplinary collaboration and a two-prong grant strategy - will help overcome challenges related to fragmented funding and research efforts while also sparking innovation to explore emerging avenues to harness the incredible scientific and technological revolution underway.
We will explore multiple therapeutic avenues, including drug repurposing, gene therapy, antisense oligonucleotides (ASO) strategies, RNA strategies, as well as studies that will help address symptoms such as epilepsy and low mitochondrial function. While there are promising avenues opening all the time, we recognize that our role is also to de-risk the science by engaging the community in creating much-needed research assets and having as many options
underway as possible to increase the likelihood of positive outcomes. We will determine the best strategies to start with through two initiatives: First, in November, we will organize a CASK Think Tank in partnership with the Orphan Disease Center at UPenn, bringing together 25-35 researchers and clinicians to discuss what we do and don't know about the CASK gene. We will fund at least two small grants from proposals on areas of needed research, submitted after the Think Tank.
Second, we are exploring direct grant opportunities through outreach to scientists proposing an approach that seems promising for CASK gene disorders. We will fund proof of concept studies for avenues that could lead to CASK treatments and a cure. The final decision on which avenues to pursue will be taken by the Board based on the recommendations and guidance of the Scientific Advisory Board and our Chief Scientific Officer. We will also start funding the development of Induced Pluripotent Stem Cells (iPSCs) and mouse models that most researchers need to test therapeutic options for the CASK gene.
COLLABORATING FOR ROBUST CASK RESEARCH
We believe that our efforts to bring the scientific and biopharma communities together to exchange expertise, share research findings and strategize together will foster a more robust and active research
ecosystem for CASK gene disorders from which we all can benefit.
In addition, we want to ensure that the CASK gene disorder community is at the forefront of the process in determining what is most important in terms of therapeutic outcomes. To this end, we support and encourage our community to participate in building our community research assets such as RARE-X and Ciitizen, among others, and we provide support to help the community navigate if, how and when they participate in research.
“Project CASK is a labor of the most profound love
born from the belief that we can make miracles happen
and powered by parents united in purpose
to whom I am eternally grateful.”
- Hitomi Kubo, Co-founder
NEWLY DIAGNOSED
CASK GENE DISORDER
It's a club none of us wanted to be in. It's also quite frankly the most loving, supportive, community driven group of families you might ever have the pleasure of meeting. First and foremost we want you to know that you are not alone. We are parents who have faced this diagnosis and no matter how much time passes, we all remember diagnosis day.
Second, we want you to know that Project CASK is passionately dedicated to driving research breakthroughs to find treatments and a cure, enabling people affected by CASK to live a life of independence, free of the debilitating effects of CASK related disorders.
Tap below to find out where to start, what to expect, and what we secretly refer to our gene as...
xx,
The PC Tribe
LEND A HELPING HAND
With your help, treatments and a cure are possible.
Thank you for considering taking action to change the lives of people
with CASK disorders; your support matters!
Are you a creative? Into tech? So many ways to give!
PLAN AN EVENT
Like to entertain? So do we.
Let's plan something!
Not a ton of time and still want to raise funds?
We got you.