FamilieSCN2A Foundation Expands Multidisciplinary Care with Children's Hospital Colorado Neurogenetics Clinic

DENVER, CO, UNITED STATES, February 24, 2025 /EINPresswire.com/ -- The FamilieSCN2A is excited to announce a new partnership with Children’s Hospital Colorado Neurogenetics Clinic to expand multidisciplinary care in SCN2A-related disorders (SRDs). SRDs are a spectrum of devastating neurological conditions that initially present in early childhood and include epilepsy, autism, movement disorders, dystonia, and dysautonomia, all caused by changes in the SCN2A gene. The partnership with Children’s Hospital Colorado marks the second multidisciplinary clinic (MDC) supported by FamilieSCN2A, expanding access to specialized care for families affected by SRDs. Led by Megan Abbott, MD, the clinic will offer comprehensive care for individuals with SRDs, including genetic counseling, personalized treatment plans for epilepsy, autism, and movement disorders, and coordinated access to specialists.

Collaboration is one of our core values and the opening of this new MDC exemplifies this commitment. This milestone is made even more impactful through a unique three-way partnership between the FamilieSCN2A Foundation, the International SCN8A Alliance, and Children's Hospital Colorado. By working together, we are advancing specialized care, research, and resources for families affected by SCN-related disorders. This collaboration strengthens the clinical and scientific expertise available to patients while fostering a model of care that prioritizes comprehensive, patient-centered treatment. Partnerships like this are essential to accelerating breakthroughs and improving outcomes for those living with rare genetic neurodevelopmental disorders.

"The International SCN8A Alliance, deeply committed to collaboration, is thrilled to be entering this partnership with FamilieSCN2A Foundation and Children’s Hospital Colorado Neurogenetics Clinic to provide SCN8A and SCN2A families with access to specialized care at this newly formed multidisciplinary clinic. Our rare genetic disorders face many of the same challenges and giving families the option to visit a clinic where there are a range of specialists familiar with caring for those with SCN8A and SCN2A increases opportunities for both impactful care and critical learning." -Gabi Conecker, Executive Director International SCN8A Alliance

Leah Myers, Executive Director of the FamilieSCN2A Foundation, the largest global advocacy organization for SCN2A-related disorders, expressed the foundation's enthusiasm for this expansion. "When your child has a rare disease like SRD, parents often have to become experts because most doctors have never even heard of it. That’s why having access to specialized care is so meaningful to our community. Knowing that Dr. Abbott will oversee the care of our SCN2A Warriors brings immense peace of mind—because every decision, every treatment, and every moment matters. There’s no room for guesswork when a life depends on truly understanding the complexities of this condition.” said Myers.

FamilieSCN2A aims to establish additional multidisciplinary clinics in the coming years, further expanding access to expert care and research opportunities.

Children’s Hospital Colorado has emerged as a leader in treating genetic neurodevelopmental disorders and developmental and epileptic encephalopathies (DEEs). With a strong research focus and a commitment to comprehensive care, the center is well-positioned to drive advancements in SRDs.

Dr. Megan Abbott commented: "I am excited to introduce the opening of this innovative multidisciplinary center dedicated to SCN2A/SCN8A. Our vision is to advance research within the SCN2A community by gathering comprehensive natural history data and creating outcome measures that will facilitate future trials for disease-modifying therapies. Most importantly, we are devoted to delivering expert, compassionate care to SCN2A patients and their families. This center is made possible through the tireless efforts of the families involved and the steadfast support of the FamilieSCN2A Foundation. We are incredibly thankful for their dedication, and I am eager to begin working alongside and supporting SCN2A families here in Colorado."

International SCN2A Awareness Day, observed on February 24, aims to raise global awareness of SCN2A-related disorders, educate the broader community, and celebrate milestones and advocacy efforts that have been led by the Foundation. Through continued collaboration and dedicated efforts, FamilieSCN2A remains steadfast in its vision of a world with effective treatments and cures for all SCN2A-related disorders.

About FamilieSCN2A Foundation
The FamilieSCN2A Foundation is a parent-led organization dedicated to improving the lives of those affected by SCN2A-related disorders, which cause rare forms of epilepsy and autism. Their mission is to accelerate research, build a supportive community, and advocate for effective treatments and cures worldwide. Founded by families who understand the challenges firsthand, they strive to bring hope and progress to individuals and their loved ones. With a vision of a world where SCN2A-related disorders are treatable, they work tirelessly to advance science and support those in need. To learn more and support their efforts visit www.scn2a.org.

Leah Myers
FamilieSCN2A Foundation
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