Year in Review - 2019 Highlights

Dear Hope for HIE community,

2019 was an incredible year for our organization. We grew to serve over 5,000 families worldwide, which brought upon wider recognition from our clinical partners, opening doors to collaboration.

Recognized by Facebook for Community Building

We began the year being recognized by Facebook as a leading community on their platform at the 2019 Facebook Communities Summit, as one of 400 hand-selected attendees.

HIE Awareness Month

We selected the theme of "Hope Never Ends" for our 2019 HIE Awareness Month in April and had unprecedented reach and participation. Hope for HIE board member, David Ford, worked with legislators to recognize April as HIE Awareness Month, and hosted a delegation of local families to be recognized. We spent time on April 20th honoring and remembering the legacies of our HIE children taken too soon on HIE Remembrance Day. We told the stories of over 500 families through social spotlights, our HIE Remembrance page on our website, and video stories across our social channels.

 

Connecting Families through Retreats

We hosted two regional retreats, one held in British Columbia, and one in Upstate New York, where over 30 families came together and connected. We launched registration for our 2020 Mom Conference Retreat, and already have over 75 registrants. We are excited to welcome blogger and advocate Ellen Seidman from "Love that Max" as our keynote speaker.

Infantile Spasms Awareness

Hope for HIE received its first ever grant through the Child Neurology Foundation and hosted three informative Q&A sessions through Facebook Live! with two leading pediatric neurologists. During Infantile Spasms Awareness Week, December 1-7, we had thousands of people tune in and two families identify IS in their own children in our community, seeking immediate treatment.

Advocacy in Baltimore

We hosted a delegation to the American Epilepsy Society conference in early December, participating in the Infantile Spasms Action Network through the Child Neurology Foundation, as well as the CNF Peer-to-peer support training program. We met with noted disability rights legislator and activist, Tony Coehlo, who is credited for drafting and sponsoring the Americans with Disabilities Act.

Hope for the Holidays

We completed our annual giving campaign during the holidays, including supporting 44 families through our annual giveaway program. Over 75 individuals started social giving campaigns benefiting Hope for HIE, and we had over 300 individual donors on Giving Tuesday alone. We launched our newly diagnosed family packages and mailed out the first 100 in early December with another several hundred on deck for the New Year, both to families who find us through our online support network, and directly through NICUs and PICUs when families get diagnosed.

We are eager to continue moving our mission forward in the New Year, and will be sharing more after our Board Retreat, held at the end of January. We are looking forward to the new opportunities that are already scheduled to begin in 2020.

On behalf of our Board of Directors, I want to thank you for your incredible support... your time, your awareness, and your gifts to Hope for HIE.

We wish you and your family a happy, healthy, and hopeful New Year.

 

Most sincerely,

 

Betsy Pilon

President


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