BDSRA Foundation is excited to welcome four new members of the Board of Directors! Suzette James, Kyleen Douglas, Fernanda Leal-Pardinas, and Wayne Kiefer will each begin their terms in January 2023.
Suzette James
What is your connection to the Batten community?
I have two children with late-onset/atypical CLN2 disease. Maya, age 19, was diagnosed 11 years ago. Xavier, age 15, was diagnosed nine years ago. Both have been receiving Brineura for approximately six years. I also have two neurotypical children, Ezra, age 17, and Elijah, age 12.
What motivated you to apply to become a BDSRA Board Member?
I want more treatments and options for all Batten children. We need BDSRA to be the organization continuing to drive this movement forward, but BDSRA can’t accomplish this without additional human and financial resources. I am looking forward to using my skills, past and present, as well as my Batten- family voice, to best support BDSRA and the entire Batten Community.
What skills do you bring to the board?
I have a management consulting background, specifically in healthcare technology, where I assisted my clients in solving complex business issues, optimizing processes using Six Sigma methodology, and strategic planning. I have also been a part of the CLN2 community for approximately 10 years, have funded scientific research through our #fightingformaya campaign, and am the primary caregiver to my two children affected by Batten. I continue to advocate in the clinical and research setting with governmental agencies such as the FDA as well as industry partners in the healthcare/biotech field.
What do you hope to address/accomplish for the Batten community now that you’re a member of the BDSRA Board of Directors?
I intend to be an integral part of the fundraising effort for BDSRA so that we can continue to support our families and expand our treatment options for all Batten types.
Tell us a fun fact(s) about yourself!
My childhood nickname was Pepperpot. You do the math. 😂😉 Let’s get to work!!!!
Kyleen Douglas
What is your connection to the Batten community?
Our daughter, Kailyn, was diagnosed in December 2016 with CLN1. Fairly quickly, we found BDSRA through Facebook and have been a part of the community/family since. We attended our first Family Conference that summer in 2017 in Pittsburgh. The moment we arrived, we knew we were with family and surrounded by people who understood what we were going through and experiencing. After Kailyn passed away in October of 2021, we, as a family, wanted to attend the next Family Conference in Cleveland. We knew that we would be able to reunite with friends who understood the road we had traveled and possibly be a bright spot for newly diagnosed families.
What motivated you to apply to become a BDSRA Board Member?
After Kailyn passed away, I knew that I wanted to do something more. I wanted to give back and help make a difference in the Batten community. As a teacher and parent, I know the importance of needing to speak up and being an advocate for your child. I want to keep a connection with BDSRA and help others in any way possible. BDSRA has been a support system for our family. The ability to quickly connect with doctors and specialists, the Family Conferences, and help families in need with the donations of equipment and many more things. This is a way that I can give back.
What skills do you bring to the board?
I have been an elementary school teacher for 17 years. I have been on both sides of the table as a parent and as a teacher. I am a parent of a child who moved from a regular education classroom to a self-contained classroom, and to a separate special needs school. I am a parent of a child who has been in speech (both private and in the school system) from the age of 2. There are many things that families can have for their children in the schools, but they have to become an advocate for their child, similarly to how we have to advocate for their medical care.
What do you hope to address/accomplish for the Batten community now that you’re a member of the BDSRA Board of Directors?
I hope to support families however I can. I know that I can help with education and help to build a connection with the schools and teachers in their understanding of our Batten kids. I would also like to support families to know more about medical facilities that are identified as centers of excellence for complex care (with knowledge of Batten).
Tell us a fun fact(s) about yourself!
I am a BIG Ohio State Buckeye fan! I am married to Brent, a BIG North Carolina Tar Heel fan. We have two daughters, Keeleigh and Kailyn. Keeleigh is 12 and in 7th grade. Kailyn is now our angel girl. She was 10 when she passed in October 2021. We have a big fur baby named Bello. Outside of teaching, I’m an all-star cheer mom, a college football fan, enjoy painting and crafts, and enjoy spending time with friends and family!
Fernanda Leal-Pardinas
What is your connection to the Batten community?
I became acquainted with the lives of children and families living with Batten disease when I worked as a Global Medical Director for the Brineura (enzyme replacement therapy for CLN2) program at Biomarin. I later became the clinical development lead for the CLN1 and CLN7 gene therapy programs at Taysha Gene Therapies and learned more about the differences between the different types of NCLs and the important unmet medical need for all of them.
What motivated you to apply to become a BDSRA Board Member?
Two things motivated my application. Firstly, my desire to remain connected with a community that left an indelible mark in my heart. Secondly, my willingness to contribute with my professional and personal experiences to improve the lives of people living with Batten disease. My professional journey has allowed me to witness the power of a disease-modifying therapy in patients living with CLN2. It also allowed me to meet wonderful families and investigators devoted to improving the lives of people living with NCLs. Those professional aspects coalesced with my personal experience living with a younger brother who passed as a young teenager after having lived with a debilitating neurological disease all his life. I feel very identified as an individual with many of the parents and siblings who I have met in the Batten community. I hope I can be of service to this community.
What skills do you bring to the board?
I bring a solid medical and scientific perspective on the development of transformative therapies for CLNs. Having worked in the Brineura program and in two early gene therapy development programs will allow me to hopefully provide valuable insights to the community on scientific, regulatory, and clinical development considerations to get a more informed view of the complexities and opportunities in the development of therapies for NCLs.
What do you hope to address/accomplish for the Batten community now that you’re a member of the BDSRA Board of Directors?
I hope to increase the level of understanding and education on the development of novel therapies for NCLs. I would also like to positively influence communication and transparency between biotech/pharmaceutical companies and the Batten community. Finally, I plan to jointly work with the rest of the Batten community to identify additional opportunities to accelerate/catalyze the development of new therapies.
Tell us a fun fact(s) about yourself
In another life, I used to be a professional flamenco dancer and a spinning instructor. I live in Northern California with my husband, dog, and 2-year-old daughter.
Wayne Kiefer
What is your connection to the Batten community?
My daughter Ashley was diagnosed with late infantile in 1996 and passed away in 2001. My first conference was right after she was diagnosed. I met some amazing people that helped me understand what would happen as the journey progressed. They gave me some great ideas and tips that helped me with her care and quality of life. Many are still friends that I see once a year at the conference but seem more like family.
What motivated you to apply to become a BDSRA Board Member?
I always remember the people that were there for me and gave support during some of those difficult times. I want to give back to both the organization and those Batten families that are going through the challenges they face — to be a resource for them or even just an ear to listen.
What skills do you bring to the board?
My professional career has been in the business world, mostly in the financial sector which includes insurance. I have been in sales and marketing throughout my career. These skills can help the organization continue to grow not only fiscally, but help to increase its fundraising capabilities and opportunities.
What do you hope to address/accomplish for the Batten community now that you’re a member of the BDSRA Board of Directors?
Help the organization grow toward the future but also remember those that have gone through the fight and continue to be involved. We must not forget all that has been accomplished because of the many families that worked so hard for so many years. We must continue to keep them involved and feel that they still are an important part of this organization. We must continue to find ways to keep people and resources connected so that we can leverage the knowledge and help that is available.
Tell us a fun fact(s) about yourself
I enjoy fishing, camping, and going on vacation with my wife. We especially love to cruise in the winter to escape the cold. We have been on over 25 cruises…with more to come.
