It has been 5 years since a group of parents set out to find a cure for their children. These parents realized that there was a desperate need for education and research, and this could not be completed without funding. They decided to combine their talents and resources to establish a non-profit foundation to help meet these needs.
We are marking our 5th Anniversary with our newest campaign…
With this campaign, we have added a new way to donate directly to the IFCR – Text to Donate!
Text CDKL5 to 75309
Participating in this campaign is easy!
- Know 5 – Get to know CDKL5 and the IFCR. Read about our mission and the many ways you can get involved and MAKE A DIFFERENCE
- Give $5 – OR MORE! Conveniently text to donate from your phone or donate directly at our website – www.cdkl5.com/donate
- Share 5 – Share this campaign with 5 (or more) family members and friends and ask them to donate $5 or more to the IFCR. Don’t forget to share our text to donate address – CDKL5 to 75309
Our goal over the next 5 years is raise $5 million! We cannot do it alone! We need your help so that we can continue to:
- Fund diverse and innovative research projects
- Expand Centers of Excellence for better access to healthcare and treatment options
- Advance the International Database for researchers to further understand the complexities of CDKL5
- Support and advocate for individuals and families living with CDKL5
- FIND A CURE!
Please read this important letter from Katheryn Elibri Frame, Co-Founder & President of the IFCR:
Happy Anniversary, IFCR is turning 5! On behalf of the board of directors, scientific advisory board and regional family representatives, I want to extend a heartfelt thank you to everyone who has believed in our dream, supported our efforts and joined the cause to find a cure for CDKL5 disorder. We are here today because of your help and dedication.
I am a bit amazed, but also sad, that we are marking this anniversary. Amazed because an incredible amount of trial and hard work has gone into these past five years, and we are still standing, stronger than ever! Yet I am sad, because a cure and treatments still elude us. Yes, this can be discouraging some days, but does that mean we should give up and go home? No way! Walking away is not an option, and if there’s one thing I know for sure is that the path ahead will lead us to a better future.
When my daughter Kiera was diagnosed in 2008 at the age of three, there was very little in the research literature about CDKL5…. A few case reports, and some preliminary lab work that suggested a link between CDKL5 and MECP2 (the gene for Rett Syndrome). There was little else that shed light on what CDKL5 does in the brain, why it’s important, or what the clinical spectrum of CDKL5 is among those affected. There were no animal models, cell lines or databases. There was no organized investment in CDKL5 research, scant information, and little hope. There was no formal organization to advocate for all of the above, and the landscape of CDKL5 was shockingly bare and isolating. It was a devastating place we found ourselves in.
What started as an idea born from the realization that if we wanted a better life, hope and a cure for our children, then we’d have to be the ones to change the future. This idea has evolved into a strong and growing movement! IFCR was created by parents who knew in their hearts that if we wanted doctors and researchers to care about CDKL5, it was up to us to foster that change. And so we did. That was the moment in time we decided “CDKL5 cannot have my child, not for one more day!” We embarked on a mission to build a solid foundation of research tools, collaborations and support and we have made strong and steady progress.
IFCR, at its core, is a foundation of parents coming together. IFCR is dynamic and diverse, and is the collective success of all of us who participate, in large ways and small, to change lives. We are a force for good, an army of people who know that our children are worth fighting for.
Here are some highlights of our first 5 years:
- IFCR funded the creation of four CDKL5 mouse models
- IFCR funded multiple iPS cell lines to help characterize CDKL5 and to test potential therapies
- Helped create and fund the International CDKL5 Database
- We established a regional family representative program so families would have local or regional support.
- We established three CDKL5 Centers of Excellence at world renowned institutions in the United States and created a CDKL5 clinical consortium in the US, from which standards of care will begin to emerge.
- Inspired several people to start CDKL5 organizations in their home country
- Hosted 2 international CDKL5 science symposia, and two CDKL5 family conferences
- Inspired dozens of families to join our efforts by hosting fundraisers for IFCR, volunteering on committees and spreading awareness in their communities and beyond.
- Raised over $1.2 million to date, and committed over $900,000 to basic and clinical research
- Proudly partnered with several large organizations to harness the power of collaboration amongst rare diseases, such as RettSyndrome.org, National Organization for Rare Disorders, American Epilepsy Society, epilepsy.com and many more.
For these reasons, and much more, IFCR is proud of what we have accomplished these past five years. The reality is, however, we are only just beginning. What lies ahead is even more important. We have a vision that children born with CDKL5 will have the ability to live long, healthy, and prosperous lives, free of the suffering and deadly symptoms of their disease. Here is our strategic plan for the next 5 years that will bring us closer to our goals of a cure, and along the way change our children’s lives for the better:
- Raise $5 to $10 Million to
- Ensure adequate funding for global collaborative research
- Fund at least 10 full time post-doctoral research positions focusing solely on CDKL5.
- Bring one to two drugs to clinical trials by the end of 2015
- Develop partnerships needed for clinical trials and FDA approval of a CDKL5 treatment.
- Develop and sustain Centers of Excellence and Research.
- Support families and caregivers with information, tools and resources to advocate for their child
- Continue to seek out partnerships and collaborations across the spectrum of epilepsy, rare disorders, autism and more.
- Advocate for public policy changes that will support CDKL5 research.
The key that opens the door to a brighter future for our children depends on your involvement and commitment. Will you take a stand with us? Will you decide today that CDKL5 has already stolen too much? Will you say “not my child, not for one more day!”?
How can you help?
- Join as a partner with our foundation, let us count you among our supporters
- Volunteer your time, skills and talent so that IFCR can continue to make strides in all areas of raising awareness, reaching out to communities, hospitals and doctors, and creating a world class foundation that will advocate for your child.
- Volunteer to host a fundraiser for IFCR so that we can lead the way in funding diverse research across basic, translational and clinical science.
- Reach out to other CDKL5 parents by joining our regional family representative program;
- Participate in research, such as the database and NIH- funded CDKL5 Natural a History Study
- Share your story with as many people as possible, especially your elected representatives. Encourage them to fully fund rare disease and pediatric research. Communicate the urgency of our children’s need for access to clinical trials and treatments.
We need you now more than ever before! What lies ahead is the hard part, and if we are to succeed in finding a cure and alleviating the suffering of every child with CDKL5, we need to know that you stand with us. Action is born from motivation and vision. We have an aggressive and ambitious strategic vision and plan for the next five years, and what motivates us all are two simple truths: Love and Hope. These can never be taken from us, diminished, negotiated or sold. Love and Hope live in our hearts and only grow stronger each and every day as we look into the eyes of our precious children, as we hold their delicate and fragile bodies, or pray by their bedside for them to live another day.
With vision and motivation there is virtually nothing we can’t do. You just need to take that first step, a leap of faith. I have no doubt we can succeed!
On behalf of all our children, I implore you to please, take action, take your first step and help us find a cure in their lifetime.
My sincerest regards,
Katheryn Elibri Frame, DO
President and co-founder of IFCR