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Glyn's Gift

The beginnings of CDKL5
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iPS Disease Modeling and Drug Development in CDKL5

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A HUGE thank you to everyone who helped us reach our goal this year!  This is all because of our hard-working, passionate, creative and loving supporters who have told the story of CDKL5.  We would like to thank you for all the numerous ways you have spread awareness, hosted fundraisers, and sent in donations.  This is a great accomplishment, and there are even greater things on the horizon!

Please continuing read for a letter from Katheryn Elibri Frame, IFCR President:

Dear Families, Friends and Supporters of IFCR,

We have reached a major milestone in our foundation in our search for a cure for CDKL5 disorder!   Not so long ago the $1 Million mark seemed so daunting and so far away.   Through hard work, perseverance, and believing that anything is possible if we put our minds to it, IFCR has reached this important benchmark!   We are so grateful to all of you, we could not have done this without everyone who has raised funds, participated in a fundraiser, donated time and resources to us, helped raise awareness, and sent words of encouragement and support. 

When my daughter, Kiera, was diagnosed 5 years ago at the age of three I was devastated, lost and heartbroken.  Not only did Kiera now have a confirmed genetic diagnosis, it was a diagnosis so rare that no doctor I knew had ever heard of it, and there was very little understanding of CDKL5 and even less research being done.   There was no treatment and there was no hope.  If the first three years of her life had felt like a nightmare that I couldn’t wake up from (with the endless seizures, medications, tests and doctors, the lost milestones and helplessness because I couldn’t make it all better), now the diagnosis of CDKL5 suggested an even bleaker future.   And so it wasn’t long after that in 2009 when several of us parents decided that we would not accept a future of uncertainty, isolation and pain for our children.   It was time to take our abundance of love for our children and turn it into action.   Could we do it?  Do we have the strength and willpower to see it through?  How on earth could we raise the kind of money it would take to start doing research?  How much would it cost to get us to treatments and a cure, and how long would it take?   When we asked these questions and started IFCR we didn’t know where it would lead, but we knew we had to try for our children.  We promised them we wouldn’t give up.

Fast forward to today, I am proud to say that IFCR is fully committed to CDKL5 research.  It’s our mission and our passion!    From mouse models, antibodies and iPS cells to screening of compounds, database registry and CDKL5 Centers of Excellence, we are off to a great start!     We have researchers from North America, Europe, Asia and Australia working on behalf of our children and they are as committed to finding a cure as we are.    We have an aggressive research agenda mapped out, including expanding CDKL5 Centers and beginning clinical trials in the near future.  

Research is happening at a fast pace!  In order to continue funding research we need your help and continued commitment to IFCR.  One realistic goal in the near future is the beginning of clinical trials, which can cost millions of dollars from early trials through drug development.   It is amazing that in a few short years of CDKL5 research we are now in a position to even discuss clinical trials. This is truly remarkable and tells our story of how love and determination led to strength and focus.  Our funding of talented researchers and methodically developing an integrated research and clinical plan has rapidly led to HOPE for our children.  It is the united effort of each and every one of us that makes this all possible.  

The first $1Million has brought many research successes.  Where will the next $1Million lead us?  How long will it take?   I don’t know the answers to these questions but I now know we can do it!   We do have the strength and will power to see it through!   Please join us for the next step in our journey and help us keep our promise to our children.

Hope * Love * Cure *,




2013 Research Goals 

  • Gene Therapy. IFCR is exploring gene therapy as an option, and we have begun early discussions with a leading institution and researcher in gene therapy. One of the first steps in the process is to develop a delivery system for the gene therapy, and IFCR is actively exploring these possibilities. It is important to understand that a gene therapy project , if successful from beginning to end, including clinical trials, is estimated to cost $8 million.
  • Begin testing existing compounds via high through-put screening in iPS cells to identify possible neurologic modifiers that can then be taken into animal trials and clinical development. In a relatively short period of time, our goal is to test hundreds of compounds/molecules already developed to see if any of them have a positive effect on the function of CDKL5 neurons. This is an important but costly endeavor in CDKL5 research, and could help us identify treatment options for some of the serious symptoms that affect people living with CDKL5, such as seizures and gastrointestinal difficulties.
  • Fund clinical projects that study seizures, bone health and the gastrointestinal system. While we are working aggressively to understand the CDKL5 protein and all its function in the brain and body, we hope to identify practical and readily accessible therapies that will help improve the physical health and quality of life of our children now.
  • Begin a natural history study of CDKL5 in conjunction with the newly established comprehensive CDKL5 database. A natural history study will give us a more complete picture of CDKL5 throughout a persons lifespan, and will help us identify interventions that improve the quality of life for our families, such as types of physical and speech therapies, augmentative communication, dietary changes, support services, etc.
  • Start a repository for biological samples from patients with CDKL5. Developing a comprehensive tissue bank can take several years. This process needs to be started as soon as possible so that tissue samples are available to scientists as the research pace accelerates.
  • Continued funding for ongoing studies that are attempting to identify function and targets of the CDKL5 protein. This type of laboratory research is fundamental to our understanding of how and where the CDKL5 protein works in the human brain and body. The knowledge obtained from these studies will help direct clinical and laboratory research for years to come.
© 2017