Executive Director and Chief Executive Officer, Child Neurology Foundation

Amy Brin, MSN, MA, PCNS-BC

"My hope is that I can provide a lens into those discussions. My training and my current role have always been in pediatrics. Even when I try not to, I will always be thinking of children and adolescents. I am representing the full spectrum, though, especially as the artificial wall on what is adult vs pediatric conditions is sort of dissolving."

In addition to working on behalf of children with special needs and their families for over 2 decades, 

 has served as the executive director and chief executive officer of the 

 since 2015. Her dedication to the field helped land her a new additional position as a member of the National Institutes of Health’s (NIH) National Advisory Neurological Disorders and Stroke Council. As a published author, award-winning speaker, and trusted convener, she brings plenty of experience to the table, which she feels is important during this time for child neurology.

, Brin discussed who else makes up the council, the responsibilities they hold, and how they assist the NIH in major decision-making. She also discussed some of the most notable topics within the child neurology field, why the crossover between pediatrics and adult neurology is fading, and the need to keep families active, engaged, and educated on children with neurological conditions.

Videos

The chief executive officer of the Child Neurology Foundation provided insight on her new position at the National Health Institute’s National Advisory Neurological Disorders and Stroke Council. [WATCH TIME: 4 minutes]

Adding Experience to the National Health Institute Council: Amy Brin, MSN, MA, PCNS-BC

"Let’s say it’s a mom in Topeka, Kansas, that is having some food scarcity issues and needs help working with their local Medicaid office. Utilizing Unite Us, we can directly connect them to those specific community-based services to further their plan of care. We’re aiming for that quality of care because if families aren’t eating, it will affect their ability to make sure that child’s medications are being refilled."

Receiving a diagnosis for a neurological condition may be troubling for some, especially young children. There are negative stigmas that are associated with neurological diseases, which can impact an individual’s quality of life and their willingness to accept their condition. Clinicians have typically tried to encourage patients to at least acknowledge their condition, as failure to do so can incur additional risks and self-harm.

, an advocacy organization, has been a leader in the child neurology community, connecting partners from across the globe to help those navigating the journey of disease diagnosis and management. Their expanded network reaches patients and caregivers, volunteers and advocates, as well as researchers and clinicians. There are a lot of complications when managing for children with neurological conditions, which is why having a social support group is extremely critical, says 

Brin, executive director and chief executive officer of the Foundation, sat down with 

 to discuss the ways social support bridges the gaps between patients, caregivers, and clinicians alike. She provided an overview on a few of the initiatives the Foundation has developed, and their unique way of reaching families within their homes to solve day-to-day challenges they may face.

Click here for more tools and resources from the Child Neurology Foundation

The chief executive officer of the Child Neurology Foundation provided insight on the ongoing efforts to make children with neurological conditions feel inclusive in today’s society. [WATCH TIME: 3 minutes]

Significance, Impact of Social Support in Child Neurology: Amy Brin, MSN, MA, PCNS-BC

"Getting the appropriate diagnosis obviously leads to appropriate treatment options—we hope. Not talking about it inhibits additional resource navigation that the clinical team, as well as the family, can be pursuing to improve that [individual’s] quality of life."

Stigma, both enacted and internalized, is experienced by children with chronic neurologic conditions and has been found to increase psychological distress, lower self-esteem, and impact social engagement, thus lowering quality of life. For years, organizations such as the 

 have been dedicated to creating a safe space for children with neurological conditions and their families by providing services and helping guide them through questions they may have.

In terms of eliminating these stigmas, Amy Brin, MSN, MA, PCNS-BC, the executive director and chief executive officer of the Foundation, believes that the community has made progress, but that there is more work to be done. In fact, while it might not be visible to everyone, 1 in every 5 children have a neurological condition. Not acknowledging the condition can also lead to negative consequences, including the increased social isolation, she said.

, Brin provided insight on the ongoing efforts to eliminate stigmas among children with neurological conditions and the steps that still need to be taken. She also discussed the negative impacts of concealing conditions and the need to build support systems dedicated to helping these individuals out.

The chief executive officer of the Child Neurology Foundation discussed the need to change conversations about children living with neurological disorders and creating more healthy environments for them. [WATCH TIME: 4 minutes]

Amy Brin, MSN, MA, PCNS-BC

Articles

Adding Experience to the National Health Institute Council: Amy Brin, MSN, MA, PCNS-BC

Significance, Impact of Social Support in Child Neurology: Amy Brin, MSN, MA, PCNS-BC

Eliminating Stigmas in Child Neurology, Importance of Publicly Recognizing Conditions: Amy Brin, MSN, MA, PCNS-BC

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