We thank all who responded to the survey questions

We recently asked families to share thoughts on the impact of Families for HoPE (FFH). We received powerful feedback from 127 survey respondents. Your responses to our survey questions help us chart the future of Families for HoPE. Because of you we will work to maintain programs that families value and create new resources families need. We are grateful to all who answered the survey.

Here’s what you told us

You confirmed that Families for HoPE’s greatest strength is the connection we share. An incredible 78% of families who answered the survey told us that connecting you with other families is the most vital thing we do and the function that most benefits families. Most survey respondents shared that before finding FFH, they felt isolated or were given little hope by medical professionals. This feedback shows that our holoprosencephaly support community is a place where parents feel empowered and deeply understood.  More than 90% of survey respondents agreed that FFH makes them feel less alone.

Education remains a cornerstone of our mission, but the survey feedback shows we have room to grow. While families who responded to survey questions find our caregiver and bereavement resources essential for navigating life with HPE, you challenged us to do more outside our own “walls.” You expressed a strong desire for FFH to lead the way in educating the public and the medical community so that when the next family receives a diagnosis, they are met with better understanding and more comprehensive support right from the start.

We also heard honest feedback regarding our Holoprosencephaly Family Conference. While it is our “gold standard” program, 61% of our community has never been able to attend, primarily due to the immense logistical and financial challenges of traveling with a medically complex child. We hear you, and we are committed to finding new ways, whether through regional meetings or increased travel support, to bring that face-to-face connection to more families.

Families who responded to the survey also shared that the impact of the current economy on their finances limits their ability to donate to Families for HoPE. Some survey respondents want to receive more information on how their donations are used to support the work of FFH.

Building a more sustainable organization

Looking toward the future, your input is helping us build a more sustainable organization. Most families expressed a clear preference for a professionalized structure, including a diverse Board of Directors made up of both parents and experts—to ensure these programs thrive for years to come. Because this perspective is so vital to our next steps, we have a few immediate follow-up questions to help us dive deeper into these goals.  Please take a few minutes to respond to the brief follow-up survey here: https://forms.office.com/r/C3utQUfQRC

We’re not done listening! Your feedback is already shaping our 2026-2027 strategy! If you would like to give further input, please reach out by submitting your name, email address, and phone number to us and a member of our team will contact you. Send your contact information to info@familiesforhope.org. Whether you engage with us on Facebook (where 98% of our active community connects!) or support our fundraising efforts, you are the reason Families for HoPE exists.