Written by Leslie Harley
In all of the years we have been doing the Family Conference on Holoprosencephaly, I don’t think there has been anyone in attendance who radiates such pure joy when she enters the room as Brianna Bixenman. Accompanied by her parents, Bill and Janet, then 19 year-old Brianna traveled from New Jersey to Dallas, Texas to attend her first HPE conference in 2016. Brianna was diagnosed with HPE at 3 years of age, but as she grew into an adolescent, she wanted to learn more about HPE and other individuals born with it as well. This conference had a huge impact, and Brianna said that for the first time in her life she knew where she fit. She embraced the kids with HPE and lavished them with her love, and the HPE families definitely embraced Brianna.
Brianna confesses that there were a lot of tears as she said her goodbyes and headed home to New Jersey after that 2016 conference–so many emotions and memories captured in just a few short days. When she returned home and shared stories of her experience at the conference, her three older siblings were amazed by her excitement and enthusiasm, and they were intrigued about the people and experiences that had such a profound effect on their little sister. As a result, they all joined her at the 2018 conference in Cincinnati, Ohio with their spouses, children and significant others.
One of those attending was Eric Brainsky, the fiance of Brianna’s sister Brittany. Several weeks ago, Eric reached out to Families for HoPE to inquire about funding needs for the 2020 Family Conference on Holoprosencephaly. Eric was so moved by his conference experience and the contagious joy Brianna exudes when she talks about her “HoPE family”, Eric wanted to do something special to support and honor Brianna’s love for the HPE families.
As a partner in the law practice Brainsky Levinson, LLC in Massachusetts, Eric proposed that Brainsky Levinson’s annual holiday party for clients, staff and family provide charitable support for Families for HoPE; even more specifically, to provide scholarships funds for HPE families needing financial assistance to attend the 2020 conference.
Shared below is a video of the speech Brianna delivered along with a video presentation Brianna created to share her “HoPE family” with the attendees. In addition to donations from clients and attendees, Eric also arranged for former 1st baseman and current “Community Ambassador” for the Boston Red Sox, Sam Horn, to attend and assist with a live auction. At the end of the evening, it was announced that over $10,000 had been raised by the event which would provide scholarships to more than 10 HPE families to attend the conference in June 2020!
Families for HoPE is extremely grateful to the clients and staff of Brainsky Levinson for their generosity and compassion for our HPE families. Thank you to Eric for helping to raise awareness of holoprosencephaly and for giving Brianna this wonderful opportunity to be an ambassador for our organization and a voice for our infants, children, and adults with HPE.
And, Miss Brianna, we are so very proud of you! You inspire us and give us HoPE. We love you very much!
Thank you, Brianna, for inspiring and creating so much fun and love in the lives of folks with HPE and their families.
Susan, Beth’s mom