Board of Directors
- Karen Utley, President
- Rick Upp, Vice President
- Paul Miller, Secretary
- Amanda Jaksha, Treasurer
- Miriam Blase
- Kristin Kozera
- Garrett Decker
- Marissa Bishop
- Melissa Ralston, Board Member Emeritus
Karen Utley, President & Co-Founder
On July 2, 2008, my life took a major turn with receiving a CDKL5 Disorder diagnosis for my daughter. 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 to help make a difference. As a founding board member and officer, volunteering gave me a sense of control in an out-of-control situation. I served as treasurer for 8 years, and in 2017, I transitioned to the president. Through these years of serving the IFCR, I have learned the importance of building partnerships and being a strong advocate for rare diseases. I am honored to serve in leadership roles for the ELC (Epilepsy Leadership Council) and REN (Rare Epilepsy Network). I am also active with rare disease organizations such as NORD, Global Genes, and EveryLife Foundation. These experiences have ignited a passion in being a strong advocate for our community. In addition, being a support system for other mothers and families of those affected by CDKL5 is a priority. Firmly believing that a cure is possible, I have earned a bachelor’s degree in nursing. As I gain knowledge in the areas of science and clinical care, I hope to use it to improve the lives of those diagnosed with a CDKL5 Disorder.
Rick Upp – Vice President
Cynthia and I are parents to Emily (26), Amanda (24), Ethan (19), Olivia (14), and Isaac (13). That’s right, five kids, which makes us the 7 Upps. We live in Spokane, WA. I have a Bachelor’s degree in French from Reed College (Portland, Oregon) and a Master’s in French from the University of Washington (Seattle). Somehow, I ended up in the high tech industry, where I have been working for 25 years. Between formal education, work, and volunteering for a variety of organizations, I’ve developed skills in communication, negotiations, partnering, organization, and problem solving (and, of course, technical skills). I look forward to using all of these to help the IFCR defeat the monster that first raised its head when our Olivia was only two months old.
Although Olivia had her first spasms at two months, it took another 10 years before a specialist in Seattle was able to determine that she had CDKL5. Learning that has changed nothing and everything. Nothing, because it offered no new treatment or cure. But it changed everything because now our enemy had a name, and we had a new focus. Our mission from that day forward has been to defeat CDKL5. We were so excited to find the IFCR and the support group on Facebook. Cynthia and I have been the West Coast Family Support Regional Representatives for the IFCR for a couple of years now, and I was honored to be asked to join the Board of Directors of the IFCR in 2016. I am so encouraged to be able to work together with such an amazing group of parents and incredible leaders to take on this terrible condition. I know together we will prevail! Our angels are depending on it.
Paul Miller, Secretary
My wife, Amy, and I live in Colorado with our daughter Natalya. I have a B.S. degree in Secondary Science Education from the University of Iowa and a M.A. degree in Curriculum and Instruction of Secondary Science from the University of Colorado – Boulder. After working approximately 10 years as an environmental chemist, I taught physics, chemistry and earth science for 20 years in Colorado until retiring from teaching in 2015.
Approximately 4 weeks after Natalya’s birth, Amy noticed that she appeared to have a seizure. Her seizure activity then ramped up in the ensuing years after that initial episode. It was about 16 years and 3 genetic tests later that Natalya was given a CDKL5 variant diagnosis. It was a relief to know what caused Natalya’s epilepsy and developmental delay but it was also evident that we were going to have a difficult road ahead of us. Fortunately, Natalya’s neurologist informed us of the Rett Clinic at the Denver Children’s Hospital which also assists parents of children with CDKL5. It was at the clinic that we were introduced to IFCR and I am humbled to be a board member of this dynamic group.
Now that Natalya has completed high school, we have found ourselves navigating a new set of obstacles. Having personally worked our way around these obstacles, one of my goals as a board member is to assist CDKL5 families during the change from adolescence to adulthood in an attempt to make this an easier transition.
Amanda Jaksha – Treasurer
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 elusive 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 caretakers, and ultimately a cure. I embrace the spirit of perseverance; together we can conquer CDKL5 Deficiency Disorder.
I am honored to serve on the IFCR Board and looking forward to furthering the work already done towards finding a cure for our children and supporting families on their CDKL5 journey. Our son, Landon, was diagnosed with infantile spasms and CDKL5 in 2010. Since then, I have been actively seeking out ways to connect with other families who have children with disabilities through the Facebook support group. I have also worked on the sponsorship committee for the IFCR Family Conferences in 2014 and 2016. I am passionate about finding care teams, resources and education to help parents so CDKL5 children can have the best quality of life possible. With Landon in tow, my husband, Bryan, and I are aspiring runners locally in our hometown of Atlanta, GA. I have spent the last 13 years in corporate financial services with JP Morgan, and I hold an M.A. Industrial Psychology from New York University.
My husband, Brian and I are parents to 3 beautiful girls – Paige (9), Josie (7), and Avery (5). We live outside of Philadelphia, PA. I have a bachelor’s degree in Biochemistry from Albright College and have spent 15 years in the pharmaceutical industry as an analytical chemist and quality assurance specialist.
Avery was just 3 weeks old when we first became concerned that she was having seizures. It took several inpatient weeks to get these seizures under some control. It was then that her neurologist ordered the genetic testing that revealed CDKL5 Deficiency Disorder. We received her diagnosis when she was just 4 months old. While it was certainly not the news we were hoping for, we were happy to have an answer. And with the answer came a family we weren’t expecting – our CDKL5 family. We found the Facebook group quickly and were overwhelmed by the support we found there. It was then we knew we wanted to get involved. We have always been an active family and that didn’t stop with Avery’s diagnosis. We hike, bike, ski and run together. We use our involvement in sports to help raise money and create awareness. As a family we have ridden our bicycles hundreds of miles in support of IFCR and the Million Dollar Bike Ride.
I am honored to be a member of the board and am looking forward to supporting all of our families and working toward a cure!!
Garrett Decker, D.O.
My wife, Samantha, and I live in Tulsa, Oklahoma with our four children: Grant, Clara, Maggie, and Geoffrey. When Geoffrey was only several weeks old, we began noticing his “clicks” throughout the day. We soon discovered that these were seizures and at 6 months of age, following genetic testing, Geoffrey was diagnosed with CDKL5 Disorder. Our journey has involved special diets, frequent long-distance doctor visits, lots of medication changes, therapy appointments, and preschool for children with special needs. Geoffrey has touched many lives all over the country and inspires those around him, including me.
I graduated from Oklahoma State University in 2002 with a degree in Sociology. I attended medical school at Oklahoma State University in Tulsa, Oklahoma and completed my residency in Anesthesiology from the University of Kansas, Wichita in 2010. I am an Anesthesiologist at St. John Medical Center in Tulsa, Oklahoma.
I am honored to serve on the Board of Directors of the IFCR. I am inspired by all the strength and energy from the medical community, pharmaceutical companies, donors, researchers, and families. Together, we can improve the lives of those affected by CDKL5 Disorder as we search for a cure.
When my son, Gregory, was first diagnosed at six months old, I was motivated to learn everything I could about CDKL5 and I was desperate for hope. I am so thankful I found the IFCR! I am continually impressed at all they do for CDKL5 families and feel honored to join this amazing team.
Helping to support our cause is very meaningful to me. In 2018, Gregory and I started “Art For Hope | Love | Cure” as a creative outlet and fundraising effort to support the IFCR. It has been such fun to have something special that we can do together while at the same time raising awareness and funds for CDKL5. Recently, I have been fortunate that the IFCR has allowed me to actively participate in their efforts by creating some of their social media content and organizing their online Zazzle store. Additionally, I was privileged to be a panelist at the CDKL5 Patient-Focused Drug Development meeting with the Food and Drug Administration in November 2019. By joining the Board I am excited to do as much as I can to help continue the important work that the IFCR is doing for our CDKL5 community. My son endures daily seizures and has significant developmental delays. Nothing is more important to me than finding a treatment that can help him and all of our children.
I have a BA in Human Services from Elon University and a MSW from the University of North Carolina at Chapel Hill. Before staying home to care for my son, I worked as a school social worker. I live with my husband, Jeff, and our son, Gregory, in Connecticut. Please follow our art project @ArtForHopeLoveCure on Facebook and Instagram or online at https://artforhopelovecure.wixsite.com/cdkl5.
Melissa Ralston – Board Member Emeritus
My husband, Ron, and I live in Ohio and have two beautiful daughters, Ava and Vivienne. Vivi is 12 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 that were walking my same path through the online 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 in 1994 and my MBA in 2000. 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, and we’ve recently held our 10th Annual Vivi’s Drive for the Cure Golf Outing. It has been my honor to be a co-founding member of the IFCR, and I remain committed to finding treatments and a cure for all of those affected by CDKL5.