First off, this charity is obviously hands down my favorite because they donate so much time, money, and effort into finding the cure for CDD. At the start of this journey, everything is so confusing. All these new terms to learn on top of the grief associated with the diagnosis can be a lot. The IFCR website was a great one stop shop to help me learn and navigate life with CDD. They are doing miracle work and I’m forever grateful.
My beautiful granddaughter Charlotte was born in 2020. Shortly after her birth she began experiencing seizures. She was put on many medications to control the seizures and nothing worked. When she had genetic testing we learned she has CDKL5 Deficiency Disorder. Consequently my daughter found the International Foundation for CDKL5 Research. I can't even imagine a world without the IFCR as they are working everyday towards treatments and a cure for CDD. I look forward to a better future for my grandchild because of the work the IFCR is doing. I am dedicated to helping my grandchild by donating, spreading awareness and volunteering. A cure for CDKL5 Deficiency Disorder is my life's goal and the IFCR is building a foundation through research and brings me hope.
Rose
Emryn was born on 1/25/23. Exactly one week later, she had her first seizure. We spent weeks in the hospital scared to death. We finally got her diagnosis when she turned 7 weeks old. “Emryn has a rare genetic disorder called CDKL5 Deficiency Disorder. She may never be able to walk, talk, or function like a normal child, and this explains why she’s had so many seizures that are drug resistant. We will see you in a month.”
To say we were absolutely crushed and confused is an understatement of how we truly felt. A disorder we had never heard of. Her pediatrician had not heard of it. No one had. We had that little of information to go off of and we wanted more. So, my husband and I went to Google and the first site that came up was cdkl5.com. This site has been extremely helpful to us. Every question we have had has been answered on this site! I am so grateful for the International Foundation for CDKL5 research and all of their help with providing resources and information to our families. We have sent the site to Emryn’s care team, and they are able to view all the information as well. We couldn’t be more blessed to have Emryn in our lives! Thank you IFCR for your support and your help to our families! God bless you all!
In 2008, when my daughter, Samantha, was diagnosed with CDKL5 deficiency disorder, there was not an organization to turn to, so I and a few other parents started the International Foundation for CDKL5 Research. Now, when someone gets a diagnosis, they can find help and support, as well as be encouraged by the research being done! Today, there is promises of treatments because of the groundwork laid by the IFCR.
I am so proud of the work our community has done through the years, and it has been amazing to see the dedication and growth over the years. There are now experts in the CDKL5 field, Centers of Excellence where families can see clinicians familiar with the disorder, and HOPE!
We work hard to use every donation wisely to continue to push the limits of what can be done for our loved ones. We hope you will join us!
The International Foundation for CDKL5 Research has provided the foundation from which all future research innovations can leverage resources, funding animal and human iPSC models; and establishing a network of clinical research centers for clinical care and research collaboration. A visionary parent-led group saw the necessary tools needed to de-risk treatments and cures for patients while putting families at the center of their mission. Family support and providing every patient impacted with CDD and their caregivers the best quality of life shines through as a primary pillar of their work.
CDKL5 Deficiency Disorder is a rare genetic disorder--so rare that when we received the diagnosis for our daughter, the only information the doctor had to share with us was a Wikipedia article written by a member of The International Foundation for CDKL5 Research (IFCR). Before long, that organization with the nearly impossible to remember name, would become our resource for information, education, and research, not to mention the center of love and support from families who understood what it meant to be the parent of a child with daily seizures, serious developmental delays, and other symptoms. If it were not for the IFCR, I don't know how we would have been able to cope all of these years. The IFCR is the largest and oldest patient advocacy organization for CDKL5. Besides patient/parent outreach, they also engage in research funding, advocacy, and sponsor 8 CDKL5 Centers of Excellence around the US. Some might think I'm writing these great things because I'm on the board of the IFCR. The truth is, I joined the board of the IFCR because all of these great things are so true.
When our family first received our son's diagnosis of CDKL5 Deficiency Disorder (CDD), we had never even heard of this catastrophic genetic seizure disorder. The first natural thing to do is to start researching what CDD is and how it might impact our lives. At the top of the Internet search page was the International Foundation for CDKL5 Research (IFCR) website: https://www.cdkl5.com. I can still, many years later, vividly remember clicking on the section "For Families" and the profoundly emotional beginning of this difficult journey.
We soon connected with the CDD community through the IFCR. We began travelling with our son to one of several multidisciplinary CDD Centers of Excellence (COE's), supported and funded by the IFCR. We have had many helpful phone calls with researchers associated with the IFCR's patient database. The IFCR continues to be the epicenter of advocacy and support as our community grows and we learn more about the features and challenges of CDD.
Having a son with CDD can be overwhelming at times. There are many physical, emotional, financial, and relational hardships unique to families with diagnoses such as CDD. Sometimes, the only comfort is the community of researchers, industry, advocates, and families working together to bring about hope and support. I am so grateful for the IFCR's leadership role in this important rare disorder space.
This is an amazing group of people that includes dads, siblings, caregivers, and friends volunteering their time to write thank yous, provide emotional support and raise much-needed funds to find ways to improve the quality of life for anyone who has been diagnosed with CDKL5 Deficiency Disorder. Also amazing because they have accomplished so much on an international level in such a short period of time.
I am honored to be advising them on their journey to secure a viable and stable future for the organization that will ensure they do everything they can to move research forward for a cure and treatments to improve the quality of life for their families with CDKL5 Deficiency Disorder.
When my son was diagnosed with CDKL5, I felt like I was handed a life-raft after being lost at sea. I had been drowning in the epilepsy unknowns and other delays my son had. The IFCR gave me knowledge and information, but even more importantly they gave me hope and a way to contribute to helping find a cure. We participate in as much research as we can. We visit the Boston CDKL5 Center of Excellence. We host fundraisers for the IFCR. This organization is so special to us.