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

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Meet the Board of Directors

Katheryn Elibri-Frame, DO, President

There are moments in life that take your breath away. For me it was my daughters first seizure when she was 8 weeks old. And there are moments that change the course of your life in a single word, CDKL5, and a single sentence, "It's very, very rare!" When I heard these words, it was October 2008 and my precious daughter, Kiera, was almost three years old. I was stunned and devastated. It was an uncomfortable place to be, because as a physician I was used to finding solutions, and looking to science and research for clues and direction. There was virtually no research being done on CDKL5, no understanding of what CDKL5 was, and no unifying organization to encourage and fundraise for research, for raising awareness or for helping families. After meeting other CDKL5 parents online, I knew that we were capable of rallying together and making a difference for our children. Within a few short months, a small group of us came together to move mountains, and IFCR was born. It is my honor and privilege to serve as President of IFCR, and to help grow this international organization into a force for good. I am now focused and determined that CDKL5 will not define Kiera's life, and I have pledged my life to making hers better. When I look into Kiera's eyes every day, and hold her fragile and delicate hands, I am awed and humbled that she believes in me. This road has not been easy, and there may be difficult days ahead, but we have come a long way in a short time. I have confidence and plenty of hope, that what lies ahead is better and brighter than where we started.

I graduated medical school from Michigan State University, and I am a diplomat of the American Board Emergency Medicine, and board prepared in Internal Medicine. I have experience with both basic science and clinical research. I represent the IFCR and CDKL5 in the Rare Epilepsy Network(REN), a coalition of national epilepsy organizations and institutions, and serve on the REN steering, database elements and recruitment and retention committees. I am also involved in the Epilepsy Leadership Council/Vision 2020 initiative for epilepsy awareness and in concert with the Institute of Medicine. I am focused on building a coalition of researchers, collaborators and advocates worldwide and raising awareness of CDKL5, and I am dedicated to building and growing the IFCR into the leading international resource for funding CDKL5 research programs for better understanding of CDKL5, its treatments and cure.
 

Melissa Ralston, Secretary

My husband, Ron, and I live in Ohio and have two beautiful daughters: Ava is 10 years old and Vivienne is 8 years old and is affected by CDKL5.

We were just settling into our new life with two kids, when Vivi had her first seizure at 4 weeks old. Everything changed in an instant. Our “normal” life was replaced with doctors’ visits, hospital stays, and tests. We received the CDKL5 diagnosis on November 11, 2008. Now that we knew what we were fighting, it was time for us to get busy trying to find a cure for it!

I was so blessed to meet other families in my same shoes on the support group. We brought an array of backgrounds together and formed the IFCR in September 2009. I graduated from Ashland University with a BA in Business Administration and a concentration in Marketing. I was fortunate to work at two Fortune 500 companies – Rubbermaid (as a distribution specialist) and OfficeMax (as an assistant buyer). Working at these companies enabled me to obtain my MBA in 2000. Soon after that, I started working at a commercial and retail juice manufacturer as their Marketing Manager. When Vivienne was six months old, I left to stay at home with her and her sister full-time.

Our family has also been very involved in fundraising for the IFCR. We’ve recently held our 6th Annual Vivi’s Drive for the Cure Golf Outing/Fundraiser. I know a cure is within reach! It has been my honor to be a part of the IFCR over the last five years!
 

Karen Utley, Treasurer

I am mom to three beautiful girls; Kindsey (24), Kaylee (18), and Samantha (7). Samantha had her first seizure at 10 weeks of age, and she was diagnosed at 20 months. As soon as I had a diagnosis, I knew that I had to be proactive. As a founding board member and treasurer for IFCR, volunteering has given me a sense of control in an out of control situation. At a very young age, I began working for my father’s business, and through this job I learned accounting skills as well as business communication techniques. I have served in leadership positions in many facets, including president of the PTO and president of a large homeschool sports and education co-op group. I love serving others with my abilities and life experiences. Being a support system for other mothers and families of those affected by CDKL5 has become my passion. Firmly believing that a cure is possible, I have begun to pursue a degree in molecular biology with a genetic emphasis. As I gain knowledge in this area of science, I hope to use it to improve the lives of those diagnosed with a CDKL5 Disorder.
 

Kelly Barnes

My name is Kelly Barnes. I live in Erie, Pennsylvania with my husband, Brian and two children. Leah is 7 years old and diagnosed with CDKL5, and Ally is 2 ½. I currently teach 2nd grade in the City of Erie where I have taught for the last 12 years. I have a Bachelors Degree in Elementary Education and a Masters Degree in Education. When our daughter Leah was two months old she had her first seizure. Shortly after that she was diagnosed with Infantile Spasms followed by a diagnosis of CDKL5 when she was just over a year. This diagnosis shook our world. We struggled with the life we thought would have and now with our reality of what life was going to be. I decided to become a board member of the International Foundation for CDKL5 Research because I wanted to help my daughter and all the other children affected by CDKL5. I have been a board member for the last four years. I know that what we are doing is changing the face of CDKL5. As a foundation we are proud of the work we have done and excited about what the future holds.
 

 

 

 

Kristin Leopoldino

I am mom to Avery , age 6 and Morgan, age 13. I have been married to Mark for 15 years and we live in Connecticut. I hold a Masters degree in Special Education and have devoted my career to working with at risk adolescents. I have been on the board for IFCR for almost three years and have worked very hard at spreading awareness and raising money to support the IFCR and its mission. My family and community started “TEAM AVERY” almost four years ago and we are proud to say we have raised close to $250,000.00 for IFCR. I am honored to be a part of such an amazing group of dedicated and motivated board members. I am committed to helping and advocating for our CDKL5 family. Together, we have accomplished so much in such little time. I am confident and hopeful there is an attainable cure and/or treatment for our kids. Together, we are stronger and I believe in miracles…..
 

Dustin Chandler

I live in Alabama, where I was born and raised, with my wife, Amy, and my two children. I graduated from Auburn University with a degree in Management Information Systems. After working five years as a computer programmer and project manager, I became a police officer. I've been a police officer for eight years and have served on many specialty units including SWAT teams and Vice units. Along with being a cop, I am also a Broker Associate with Keller Williams Realty and have been selling real estate for 13 years. When Carly was diagnosed February 22, 2012, I felt helpless. That all changed when my wife and I found IFCR. Through this organization, we found an avenue to help Carly, as well as all children facing these challenges. In 2014, I started a grassroots campaign in Alabama to lobby the Alabama legislature to pass a limited medical cannabis bill allowing the use of CBD Oil. The bill's namesake, Carly's Law, is named after my daughter Carly Chandler. I am currently working on a project called Carly's Clubhouse which will be the largest and first truly all-inclusive playground in Alabama. I was selected to the Board of Directors for IFCR in 2013. It is an honor to serve the CDKL5 families across the United States. Working alongside the other board members, my goal is to bring maximum awareness and fundraising dollars to our ongoing research studies to find a cure for CDKL5.

Amanda Jaksha

My oldest daughter, Ava was seven months old when noticeable seizures came roaring into her life. We spent many tumultuous years dangling from a string while managing refractory epilepsy and chasing evidence that might explain her illusive neurological condition. After six years of guesstimating, an answer came in the spring of 2012 that named the culprit in Ava’s complex medical puzzle. Her neuro-metabolic team had finally identified the small deletion in her CDKL5 gene. It was liberating to have a diagnosis and delightful to find the International Foundation for CDKL5 Research in existence. It is an honor to join this amazing Board of Directors and take part in advancing their swift paced momentum towards treatments and a cure. I earned my Bachelor of Science in Business Administration with an Accounting concentration from Colorado State University. My family calls Colorado home and I manage my own accounting business with a focus on managerial accounting. I am also a certified nurse aide; this allows me to provide direct care to Ava as an employee of a large home health care agency. You can find me at the Children’s Hospital Colorado CDKL5 Center of Excellence representing the IFCR, a duty I adore. In unity, we will realize a brighter tomorrow that includes treatment options, a road map for care takers, and ultimately a cure. I embrace the spirit of perseverance; together we can conquer the CDKL5 disorder.

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