Hope for HIE

Goal #1:
Establish Hope for HIE as a legal, 501(c)(3) entity based in the US, but with a worldwide reach.
(completed 2014)

Goal #2:
Create financial sustainability for the organization.
(ongoing for the first five years, and setting a new course to get resources to add paid staff in the next five years)

Goal #3:
Become the premier source families connect with after a diagnosis of HIE.
(We are widely recognized as the premier source of support for families with HIE, worldwide)

Our next big organizational goals include:

Goal #1: Partnering with key researchers, medical entities, and stakeholders to look at how we can decrease the incidence of HIE.

Goal #2: Partnering with key researchers, medical entities, and stakeholders to look at how we can increase therapeutic treatment options to optimize each child's potential.

Complete necessary paperwork at the local and federal levels to ensure the organization is structurally compliant with applicable laws. (done - 2014)

Establish a US-based Board of Directors with people who are passionate, share the vision, and are committed to achieving Hope for HIE’s maximum potential.
(done - and ongoing)

Set up a worldwide steering committee to help lay the foundation for future global growth.
(done - established in 2013 and continue to have global stakeholders on committees, etc.)

Establish a sound accounting system with proper checks and balances ensuring a workable structure is in place.
(done for the first five years - working on setting up a strategic plan for growth for the next five years to move from 100% volunteers to being able to bring on paid staff, as we are hitting the ceiling of what unpaid volunteers can do)

Build and implement a fundraising plan with multiple revenue streams.
(done and ongoing - working on finding major gift donors and appropriate partners and sponsors to fund our initiatives)

Capitalize on applicable free and low-cost resources available to 501(c)(3) organizations to streamline operations and minimize costs.
(ongoing)

Create a website to be the hub of all communication and resources for the constituents and families benefiting from the organization.
(done! website redesign is underway in 2020)

Outreach outlined to develop groups in geographies beyond the U.S.
(done and ongoing)

The sheer number of established members throughout Hope for HIE-affiliated networks worldwide should allow Hope for HIE to flourish and start the dialogue to spread awareness of HIE, if done so in a coordinated effort.

Hope for HIE has dedicated people with a variety of skill sets and connections to see this through across key areas such as legal, finance, marketing, administration and promotion.

Five years into our organizational journey, we have grown our network from 200 families to now serving over 5,000 worldwide, with more finding us every day.

We have built a significant amount of awareness with clinicians and social workers of our network, capitalized on social media engagement and communication, built and optimized our website for search engines, and have developed several support programs through our foundation.

2019 saw an incredible period of growth and awareness of Hope for HIE, with several researchers and clinicians asking to collaborate on several projects that will move forward in 2020 and beyond.

We engaged with a company called TREND Community to analyze the community discussions of the last 9 years, netting in a Community Voice Report that outlines our community unmet needs, as well as insights into the HIE family experience. This report has allowed us to affirm what we already know in our community, and work to move the organization forward to the next level.

We have highly engaged volunteers, a network of over 100 location-based and topic-focused groups, a recognized highly-engaged community of over 92% actively participating families.

We launched retreats and meet ups for our families, including regional family retreats and biannual Mega Mom Conference Retreats, where families can come together and network.

Our families are leading the way in advocacy for legislative priorities to best take care of our children medically, educationally, emotionally, and socially.

We have been asked to have representation at several key conferences, and in medical societies.

We will continue moving forward focusing on continuing to first and foremost, serve our families with support, and move into two big arenas of finding ways to 1) decrease incidence of HIE and 2) improve therapeutic treatments, advocating for medical, educational and societal improvements to ensure each HIE child can reach their individual potential.