One in six children is living with a neurologic diagnosis. CNF can accompany patients, caregivers, and families in the child neurology community on their paths… from the onset of symptoms, to seeking and receiving a diagnosis, to choosing treatment options, to finding support that you and your family need and deserve!
New: FSEP was proudly featured in the recent Rare Neurological Disease Special Report. See the article here.
Peer Support Bootcamp
Is your organization actively working to provide peer support to your community? Are you interested in learning best practices, key elements, and effective techniques to providing peer support that is both helpful and healthy? Or in meeting and sharing experiences with colleagues who are providing peer support?
If so, we have an opportunity for you! On Tuesday, October 2, 2018, in partnership with the Global Genes, CNF will offer a 1-day Peer Support Bootcamp. The Bootcamp will be held the day prior to the RARE Patient Advocacy Summit, in Irvine, CA.
The Peer Support Bootcamp is convened by FSEP and FSEP’s Peer Support Specialists will facilitate the discussion and share their real-life experiences, not only as leaders in the peer support space but also, and more importantly, as parents of children with neurologic conditions.
At the end of the Bootcamp, attendees will have actively participated in:
- Discussing research that underscores the value, impact, and health benefits of peer support to families
- Learning best practices, key elements, and effective techniques to providing peer support that is both helpful and healthy
- Meeting and sharing experiences with colleagues who are providing peer support
- Exploring a common vision and commitment to work together, as providers of peer support, to ensure that families and caregivers have access to someone who will listen and walk with them on their journey
- Building a network of peer supporters, with the goal of enriching and diversifying assistance opportunities for the families we serve
Please note, this Bootcamp is limited to 28 people, one representative per organization, and is first come first served. There is no fee to participate in the Bootcamp; however, individuals selected to participate in the Bootcamp must register to attend the Global Genes Patient Advocacy Summit.
If you are interested in participating, please apply now.
CNF was awarded a Patient Centered Outcomes Research Institute (PCORI) grant to help convene caregivers throughout the entire child neurology community that are engaged in peer support efforts. This collaborative project’s goal is aimed at identifying current gaps and possible strategies to help our community legitimize peer support as an effective intervention for supporting our caregivers. In March 2018, CNF launched a collaborative peer support work group to lend their insights and identify solutions for the entire community! Click here to learn more.
Family Support and Empowerment Program
We are here to listen and help. We have been there. We are parents, like you.
If you’re a PARENT, receiving a diagnosis for your child can be life-changing. Having a safe place to explore feelings of “this is not the way it’s supposed to be” is what the CNF Family Support and Empowerment Program (FSEP) is all about. Sharing the emotional process that often comes with a new diagnosis or living with a neurologic condition, with someone who has also experienced these feelings, can be helpful to many families.
FSEP offers families a direct connection with an experienced, compassionate Peer Support Specialist to help navigate the journey of disease diagnosis, treatment, and management for a child living with a neurologic condition. FSEP’s Peer Support Specialists are trained to listen to you along this emotional journey without judgment. Each Peer Support Specialist receives comprehensive training about the needs of the child neurology community and ongoing mentorship as they start connecting with families. Along with offering relational support, Peer Support Specialists seek to empower families by sharing sound information and helpful resources.
**CNF is looking to grow our Family Support & Empowerment Program (FSEP) so that we can continue to provide free support to all families. Please consider a donation**
Connect with an FSEP Peer Support Specialist today by telling us a little about you and how we can help.
FSEP was created so that no parent or caregiver in the child neurology community ever walks alone: “We would be humbled and honored to walk with you on your journey.”
Please note: we are not medical professionals and cannot review any diagnostic tests, like EEGs
If you are looking for a neurologist, our partners at the American Academy of Neurology (AAN) have a helpful “Find a Neurologist” tool that enables you to search for a neurologist by specialty, last name, city, or state. To find a neurologist who sees children and teens, select “Child Neurology” from the list under “Subspecialty.”
Please note: Peer Support Specialists are not medical providers. Support from FSEP is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your neurologist, physician, or other qualified health provider with any questions about or related to a medical condition. CNF assumes no responsibility for any injury arising out of or related to any use of FSEP and related information or for any errors or omissions.
Since early 2017, FSEP has been contacted by families from 44 US states and 42 countries across the globe*!
Click our map below to see more about our reach!
*as of March 2018