CPN originated in the personal story of a rare disease mom, and now bereaved parent, who began advocating for pediatric palliative care and the needs of families shortly after her daughter’s death from infantile Tay-Sachs. A family’s story about their journey with their child is central to everything CPN does. These stories help other parents feel they are not alone and find guidance. They help clinicians better understand the lived family experience – beyond the hospital setting – as well as the whole family’s psychosocial and emotional needs. They are also the vehicle by which CPN promotes palliative care as an extra layer of support for families affected by serious illness.
We created the Parent Champion Program in 2023 to strengthen CPN’s capacity to bring palliative-informed, family perspectives to more clinicians and patient organizations nationwide. You can learn more about the program and our first class of Parent Champions here.
We are currently seeking 4 parents/caregivers to become our second cohort of Parent Champions. A fifteen month commitment (4/1/2025- 6/30/2025), Champions will hone their own personal story, be trained in how to utilize CPN resources with clinicians and families, and be asked to share their experiences in a minimum of 5 presentations over the term. Champions will be required to attend an in-person, 3 day training retreat (travel and accommodations covered by CPN), monthly (virtual) Parent Champion and mentor meetings. Additionally, Champions will be expected to participate in CPN’s programming (virtual or live) throughout the 15 month term and engage on social media.
The Champion role is a paid, part-time contract position with specific activities and deliverables which will be explained during the interview process.
Ideal candidates for the program will meet these criteria:
- Child received palliative care and parent has a willingness to advocate for it
- Familiarity with CPN resources
- A strong relationship with child’s medical team or other providers (school, community, therapists)
- A relationship to patient/support organizations (ie Parent to Parent, Global Genes, ARC, disease specific groups)
- Comfort with public speaking
- Proficient writer
- Willingness to expand the CPN network via connections and potential speaking engagements within a geographic region
- Willingness to increase CPN’s social media reach
- Have the capacity to travel up to 3 times per year
If you are interested in applying please send an email to connect@courageousparentsnetwork.org by Feb 15, 2025 with the below information. Previous applicant are welcome to apply.
Part 1
- Your Full Name
- Home Address
- Family members in the household. Please include your relationship to them, their age and where applicable the diagnosis. If your child has passed away please indicate so.
- Please include the hospital where your child receives or received the majority of their care.
- In 1-5 sentences tell us your child’s diagnostic odyssey.
Part 2
Also, please answer each of these questions in 750 words or less.
- Why are you interested in becoming a Champion? What unique perspective/experience do you bring?
- What has been your experience with CPN?
- Describe any public speaking experience you have?
- Describe the role of palliative care in your child’s care?
- Decision making is a big part of the caregiver experience. Describe a time that you felt the weight of making a decision and tell us how/what got you through it.
After reviewing your email, we will reach out to let you know if we would like to schedule an interview. You will also be notified if your application did not meet this year’s goals for the program. Thank you so very much for your interest. We truly look forward to reading your application.