The LGS Foundation recognizes Those who have made a significant Impact in the LGS community
The LGS Foundation appreciates and values our community’s commitment to ending the devastation and suffering caused by LGS and recognizes the significant impact of the many selfless individuals who dedicate themselves to supporting the LGS Foundation’s efforts to achieve its mission.
Without these dedicated individuals, we would not be where we are today.
Together, we are stronger and have the greatest ability to bring lasting change to the lives of those impacted by LGS. Through their dedication, we will continue to reach our goals and one day achieve lasting and life-altering new treatments and cures for LGS.
The Leaders in LGS awards allow the LGS Foundation to acknowledge and support the efforts of those individuals or organizations who shine brightly through inspiration, outstanding dedication, and commitment to the Vision and Mission of our organization.
These Leaders have not only significantly impacted the LGS Foundation but have also had an unprecedented positive influence on the LGS community as a whole.
Jordan Bradley, LGS Family Ambassador
Jordan Bradley is a devoted Family Ambassador for the LGS Foundation. Jordan lives in Colorado, and for the families she serves, she is so much more than a volunteer, she is a lifeline. Driven by her own lived experience as mom and caregiver to her daughter Klohe, Jordan understands deeply what it means to feel isolated in this journey, and she has made it her mission to ensure no other family ever feels that way.
Through consistent organizing of local gatherings, holiday parties, tie-dye events, and annual Walk for LGS Research fundraisers, she has built a warm and welcoming community for LGS families in Colorado and beyond. She volunteers at national conferences, serves on advisory councils, and participates in awareness campaigns like Illuminate for International LGS Awareness Day™, showing up time and time again with the same open heart. Jordan shares Klohe's story with honesty and joy, highlighting accessible outdoor experiences and breaking down the barriers many families believe are insurmountable. Her presence on social media further amplifies the LGS community, giving families a place to feel seen and celebrated. Jordan's leadership is defined by the quiet, consistent courage of someone who keeps showing up, for every family, every time.
Kurt Oberhausen, LGS Family Ambassador
Kurt Oberhausen is the kind of advocate who doesn't wait to be asked. He simply shows up, again and again, for the LGS community. Kurt is married to Kassie, and they live in New Hampshire. Kurt’s motivation to raise awareness and support others is spurred by his deep love for his daughter Addison. He is always willing to share their family’s lived experience to be a spark for change.
Whether he is attending LGS Foundation events, raising his voice on Capitol Hill during national advocacy efforts, or lending his support wherever it is needed most, Kurt brings with him a quiet but powerful commitment that does not go unnoticed. He willingly puts himself forward in spaces that can feel overwhelming, because he knows that the LGS community deserves a seat at every table. His compassion is not just felt locally; it extends to the national stage, where he advocates boldly on behalf of families who are living with LGS every single day. Those who know Kurt describe him through the same words: compassion, advocacy, family support, consistency. And in a community that depends on people who keep showing up long after the spotlight fades, those words mean everything. Kurt's dedication is a gift to this community, and his presence reminds families that they are not alone in this fight.
Scott Perry, MD, LGS Foundation Board Member
Scott Perry, MD is the kind of physician that every family living with LGS hopes to find and the kind of person the LGS community is deeply grateful to call one of their own. From the moment a family walks through his door at Cook Children's, Dr. Perry brings not just his clinical expertise, but his whole heart. He takes the time to explain complex diagnoses in plain language, involves families in every decision, and follows up with a level of personal care that goes far beyond what is expected. For families navigating the frightening and often overwhelming world of LGS, Dr. Perry is more than a physician; he is an anchor. He is a bright light in moments that can feel dark.
His commitment doesn't stop at his patients. Dr. Perry has made significant contributions to LGS research, helping to improve standards of care at Cook Children's and across the broader medical community. He is an active member of the Foundation’s Medical and Scientific Advisory Council, a valued presence at Meeting of the Minds and the LGS Foundation Family & Professional Conference, and most recently joined the LGS Foundation Board of Directors. He generously gives his time, his voice, and his expertise wherever they are needed most. He never hesitates to step forward in support of the LGS Foundation's mission, and he does it all with warmth, dedication, and even fun! Those who know him will agree the infectious sense of humor that makes him truly one of a kind. Dr. Perry doesn't just treat LGS, he is a lifeline for every family living with it.
Natalie Gilmore, LGS Foundation Past Board Chair
As we reflect on the journey of the LGS Foundation, it's essential to recognize the remarkable leadership that has shaped our organization during pivotal moments. So, we want to take a moment to celebrate Natalie, who has distinguished herself as a true steward of our community, demonstrating unwavering commitment and resilience in her role.
Natalie has dedicated her time and skills to the LGS Foundation, playing a crucial role in organizing events for International Awareness Day over the years. She stepped into the position of Board President during a pivotal moment for our organization, guiding us through simultaneous leadership changes. This was no small feat, yet she embraced the challenge with grace and determination. For a year, Natalie expertly coordinated the Board of Directors while managing daily operations in the absence of an Executive Director. Her ability to maintain stability during such a transitional period was nothing short of extraordinary.
Natalie’s governance was characterized by a thoughtful consideration of change, growth, and the unique needs of our organization. Her strategic vision and commitment to collaboration have set the stage for a thriving future for the LGS Foundation and community.
Tricia Proefrock, LGS Community Support Coordinator
In the heart of our community, where compassion and dedication converge, we are fortunate to have leaders who truly embody the spirit of support and guidance. One such leader is Tricia, our exceptional Community Support Coordinator in the LGS Foundation Ambassador program. Her unwavering commitment to families and her innate ability to connect with others make her an invaluable asset to our team.
Tricia’s approach is rooted in empathy. She understands that every family’s journey is unique, and she takes the time to listen, ensuring that each member feels truly heard and valued. Her ability to connect with families is a testament to her nurturing spirit, making her a trusted ally for those embarking on this path. Whether it’s answering questions, offering guidance, or simply lending a compassionate ear, Tricia is always there, reminding families that they are not alone.
Jamie Riley, LGS Community Support Coordinator
In the vibrant tapestry of our community, certain individuals stand out as beacons of inspiration and dedication. One such individual is Jamie, whose unwavering commitment and exceptional support have made a profound impact on our ambassador program and the community as a whole. Jamie's exceptional support and unwavering commitment have made her a true leader in our community.
Jamie is not just a participant; she is a catalyst for change. Time and again, she has taken the initiative to rally her team and the community around our shared mission. Whether it’s organizing events, providing guidance to new ambassadors, or simply lending a listening ear, Jamie is always there, ready to lend her support. Her ability to inspire those around her is a testament to her leadership qualities and her deep-rooted commitment to our cause.
Jamie's presence at our events has been nothing short of remarkable. She consistently goes above and beyond, volunteering her time and energy to ensure that everything runs smoothly. Her proactive approach and willingness to fill in wherever needed have not only enhanced the quality of our events but have also fostered a sense of camaraderie among our volunteers. Jamie embodies the spirit of teamwork, making everyone feel valued and appreciated.
Addyson Gruber, LGS Sibling
In the heart of our community, there shines a bright light named Addyson. With unwavering determination and a compassionate spirit, she has become a pillar of hope for those impacted by LGS.
Each year, Addyson organizes an annual fundraiser that not only raises essential funds but also fosters a sense of unity and hope among families dealing with LGS. Her efforts go beyond mere fundraising; they create a platform for education, understanding, and support. Through her tireless work, Addyson is not only advocating for her sibling but also shining a light on the struggles faced by countless families in our community.
Her dedication extends to engaging and educating her school about LGS, further amplifying the impact of her advocacy work. Addyson's commitment to the cause demonstrates the power of young advocates in making a difference for rare diseases like LGS. By combining grassroots fundraising with educational outreach, Addyson exemplifies the spirit of advocacy that is crucial in advancing understanding and support for those affected by LGS.
Fred Roedl, LGS Family Ambassador
Fred is currently enjoying retirement, residing in Naples, FL in winter and Bloomington, IN in the summer. In addition to relishing leisure time with family and friends, Fred has an active lifestyle of exercise, volunteerism and writing. His volunteering includes being a LGS Ambassador since 2020 for Indiana and Florida, a caseworker for the St. Vincent de Paul Society, an outreach Eucharistic minister to nursing homes and retirement communities for St Peter the Apostle Catholic Church, and a mentor for graduate business students at Indiana University
Fred and his wife, Mary Beth, have been married for 51 years. As a team, they raised three sons, Brian, Nicholas and David, and are now relishing four grandchildren. While each of their children and grandchildren possess special gifts and talents, their eldest son, Brian, stands out by courageously and joyfully endured the difficulties of developmental disabilities and Lennox-Gastaut Syndrome throughout his life. He is now at rest, but continues to inspire all who knew him each day.
Kara Fox, LGS Family Ambassador
Kara Fox is mom to 14-year-old LGS warrior Julian. Kara has been the Northern California LGS Ambassador since joining the program in 2018. Kara can be found on our private LGS Foundation caregiver Facebook group. She has been dedicated to ensuring that our environment is one of support, caring and mutual respect for everyone who seeks support in the group. In her professional life, Kara is a journalist and a Adjunct professor at Sierra Nevada University Teaching Journalism and English and is also a freelance writer and journalist.
Kara’s love of music and smiles on our kids faces allows her to lead with her excitement in filling the shoes of our in-house LGS Foundation DJ for our favorite Virtual Dance Parties. Kara makes sure that all LGS families and kids laugh, smile and dance to their favorite tunes!
Darla Davison, LGS Family Ambassador
Darla and Dan are Parents to Aaron, age 32, who was diagnosed with LGS at age 19. Darla and her family live in New York. Darla brings with her an unparalleled commitment and dedication to her role of the North East Regional Coordinator for the Patient Navigator & Family Ambassador program. Darla has great compassion for caregivers who feel alone or isolated, she enjoys connecting with LGS families near and far.
Darla’s creativity shines through with the establishment of the LGS Strong jewelry line. Each piece of jewelry is handmade with love for our LGS families. You can check out the complete line on our website.
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Updated 07/22/26 (KK)