Hope for HIE takes on Advocacy
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Two delegations of Hope for HIE volunteers spent time during the week of December 2 spreading awareness, education and support through the American Epilepsy Society conference in Baltimore, Maryland, and the TASH Conference in Phoenix, Arizona.
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American Epilepsy Society Conference - Baltimore, Maryland
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Peer-to-Peer Support Training
Hope for HIE was invited to send delegates to a peer-to-peer support training co-hosted by the American Epilepsy Society and Child Neurology Foundation.
Board Secretary, Lindsay Vanzandt, attended with Crystal Kostick, Local Chapter Moderator from Colorado, and Becky Detlef, Loss Administrator.
"It was so inspiring to be in a room full of other organizations like ours, many with paid staff and more resources, and seeing what we have been able to do with volunteers over the last five years. I'm so proud of the work we have done and continue to do.
I am eager to grow Hope for HIE's support programs and look forward to seeing how we can work to reach our organization's potential as we move forward," stated Lindsay Vanzandt.
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Infantile Spasms Action Network
Lisa Ledson began representing Hope for HIE on the Infantile Spasms Action Network in Summer 2019. As a mom to a daughter who experienced HIE as well as IS, it is important to her to help other families, and as an ER nurse, she has a clinical background that allows her to more deeply understand this diagnosis. Lisa attended the full AES conference, as well as the ISAN meetings, with Hope for HIE, President, Betsy Pilon.
"HIE is a leading cause of Infantile Spasms, and it is my passion to bring the resources and awareness back to our community to help families through this difficult situation. I'm so grateful that I can volunteer with Hope for HIE and help advocate for better treatments, more research, and collaboration in the medical community," stated Lisa Ledson.
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Networking and Connecting at AES
Betsy Pilon, Hope for HIE President, was recently named to the Newborn Brain Society Board of Directors in August, collaborating as the parent voice in the newly formed medical society. As a part of these new connections, attending AES and the ISAN meeting brought opportunities to also connect with some leading pediatric neurologists in attendance and neonatologists serving as faculty for a neonatal conference nearby.
In addition, Board Advocacy & Fundraising Chair, David Ford, set up a meeting
with Tony
Coelho, former legislator and noted for being the architect of the Americans with Disabilities Act, to discuss Hope for HIE priorities and ways to advocate and move the organization forward.
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TASH Conference - Phoenix, Arizona
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Creating Inclusive Communities
After connecting through Hope for HIE, Jill Uswajesdakul and Debra Curran, both incredible advocates in their own right, came together at the TASH Conference, recently held in Arizona.
At Jill's suggestion, Debra put together a presentation submission and was selected to present at the conference.
"I was totally out of my comfort zone, but felt amazing to attend the conference, be recognized as a parent advocate, and learn from others at the conference," stated Curran.
Hope for HIE started an advocacy subgroup where families can come together to discuss ways to move different initiatives forward that impact our community.
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10 Days of Holiday Giveaways
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For the fourth year in a row, Hope for HIE held 10 days of Giveaways in our community providing equipment, switch-adapted toys, carriers that make life with challenges more accessible for our HIE children, and items to make caregiving and life management a bit easier for our community.
This year, we were able to give 44 families a little extra HOPE for the Holidays.
THANK YOU to everyone who gives to Hope for HIE to make this possible.
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Thank you Hope for HIE!
Beatrix loves her new carrier. Which is a sentence I never thought I would say."
Tanya, Nova Scotia, Canada
2018 Giveaway Winner
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Robert is working on tummy time with his new Firefly PlayPak thanks to this amazing group! Thank you again Hope for HIE!"
Allison, Boston, Massachusetts, USA
2018 Giveaway Winner
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