Important Update from Families for HoPE

To our dear HPE families,

Over the past several months, the board of directors of Families for HoPE has been closely monitoring the coronavirus pandemic with the health, safety and well-being of our HPE families in mind. Of particular concern is the instability of the pandemic, the most-recent evidence that children may be vulnerable to a multi-system inflammatory syndrome triggered by COVID-19 infections, and the economic impact on our HPE families.

After careful consideration, we have arrived at the difficult decision to cancel the Family Conference on Holoprosencephaly which had been rescheduled for June 2021 (postponed from June 2020). We are heartbroken to make this decision as in-person conferences hold so much value for the HPE families who are able to attend, but we believe this is the best choice at this time. Families currently registered for the canceled conference will be contacted in the coming days to arrange a refund of registration fees.

Please know that there is still much reason to have hope, as we intend to resume our conference in 2022. Until then, we are working on a plan for support and fellowship for our fellow HPE families, and we are excited to bring new offerings to our HPE community through virtual technology at no charge to you!

Utilizing the Zoom platform, we will bring you a series of live and recorded webinar presentations from several of our conference speakers. The first webinar will feature Dr. Paul Kruszka with the National Institutes of Health who will share genetic research discoveries and breakthroughs made in 2019. We will be sending emails soon for the dates and times for these webinars and how to register. The webinars will be recorded, so if you are unable to view the live presentation/discussion, they will be uploaded to the Families for HoPE website for future viewing at your convenience.

We also will be offering virtual opportunities for individuals to come together from the safety of their own homes. The Families for HoPE Parent Advisory Committee is developing a plan and schedule to incorporate group video chats for informal communication and virtual interaction among our HPE families. Stay tuned for email updates in your inbox during the coming days!

Families for HoPE is committed to developing new ways to continue its mission to support, encourage and educate HPE families during this unprecedented time. Please watch for upcoming surveys seeking your input and feedback as we expand our programs and offerings. Your help and support has been and will continue to be critical in making it through this difficult period.

We appreciate your trust in our organization and look forward to serving you now and in the future. If you have any questions, please do not hesitate to reach out to us at

With HoPE,

The Board of Directors of Families for HoPE, Inc.
Leslie Harley, Cheryl Lehman, Heather Rinard, Roxanne Steele, Josh Timmerman and Becky Wilson