A Message from Betsy Pilon, Executive Director |
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By this time, most of our children have finished the school year for the summer and are looking at the prospects of creating family memories, perhaps increasing their travel, and making decisions for their family as the world is beginning to open back up.
Every day, I am in awe of the dedication, love and information share our families partake in to give peer support to one another, in the quest to improve the quality of life for their children and family.
This last year has challenged the entire world in innumerous ways, and we hope that everyone can take some time to recalibrate, exhale and cultivate joyful times in the big and small moments.
With many HIE children falling into "high risk" categories due to cerebral palsy, epilepsy, respiratory issues, immunocompromised, etc. we are continuing to work through and share information to help families make sense of what this may mean for their individual situations and risk thresholds.
One of the most recent resources that I found helpful for my own family, and our community, is a set of graphics laying out the risk thresholds for various activities as we plan out the next several months, sourced by a collective of epidemiologists and pediatricians. The blog post by Your Local Epidemiologist can be found below, with many helpful infographics to help communicate and understand the information.
I'm wishing you all a wonderful, restful, healthy summer!
Most sincerely,
Betsy
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COMMUNITY CALL FOR ACTION:
Share Your Photos, Artwork, Poems
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Our summer intern, Simran, has been busy interviewing our HIE families, Medical Advisory Board members and community at large as she makes progress on the community story project.
There are so many creative families in our community, so if you have any visual and written pieces that represent your HIE journey that you would like to include in the book, e-mail them to simran@hopeforhie.org, along with a description/caption.
These submissions can range from anything to poems about the NICU experience to art you or your child has made to photos that capture a sweet moment & more!
Submission Guidelines for Photos, Artwork: Please email high resolution photos, images, artwork of 300 dpi.
Feel free to submit multiple pieces as well.
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Sleep Webinar with Dr. Brittney Pryor Craig |
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Sleep issues are one of the top concerns expressed by our HIE families, and across all outcomes.
We recently participated in an incredibly informational, comprehensive webinar facilitated by the Child Neurology Foundation with Dr. Brittney Pryor Craig, a double-boarded child neurologist and sleep medicine specialist, who is also a member of our Medical Advisory Board, on the prevalence of sleep issues in children with HIE and the greater child neurology community.
Topics included:
- Sleep hygiene
- Contributing factors to behavioral-based disordered sleeping
- The impact of medications on sleep
- When a sleep study may be helpful
- The impact of CBD oil on sleep and potential interactions
- Troubleshooting some issues through a Q&A
Be sure to view the recording below, in case you missed it.
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Just Say HIE Podcast Episode: Cultivating Worldwide Support |
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This month, we talked to Shiru Wanjiru, learning more about her HIE story and connection, finding support, ideas for advocacy, and the need for collaboration to improve access to equipment in areas of disparity.
Learn about the nuances of her journey and the connections that have helped her advocate for cultural change and the reduction of stigma surrounding disability.
Shiru Wanjiru is an attorney advocate, mother, wife, and resident of Tanzania, where she works closely with marginalized populations.
Listen along to learn more about an upcoming project Hope for HIE will be partnering with Shiru on to fulfill some critical needs of her community and families of children with disabilities, her hopes for Malik, and the power of connection in the Hope for HIE community, worldwide.
BONUS EPISODE: This month, we launched a bonus episode featuring Nancy Calamusa, MA, SLP-CCC and Dr. Scott Siegel with information they shared during a Facebook LIVE! on Tongue, Lip & Cheek Ties -- a hot topic in our community, and in parenting
Be sure to subscribe to our podcast on iTunes, Amazon Music, Audible, Spotify, and more!
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FAMILIES ENROLLED IN THE NEONATAL SEIZURE REGISTRY:
Enroll Now in the Follow Up Study
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If your child participated in the Neonatal Seizure Registry study, they are now eligible for a seizure follow-up study.
We know as a community how important tracking long term outcomes is, and this new study follows development in children 3 and older.
The aim of the study is to understand long term outcomes in children who had neonatal seizures and how having a child with seizures affects parents and families.
The study will involve neurodevelopmental follow-up evaluations and review of your child’s medical records. Most evaluations will be completed by telephone or online. There will be one in-person visit when your child is around 5 or 6 years old.
If you were enrolled before and aren't currently enrolled, or aren't sure, be sure to contact your site coordinator, or Emma Scudero, the NSR clinical research coordinator, who can put you in touch with your site. She can be reached at emma.scudero@ucsf.edu.
WANT TO LEARN MORE INFORMATION ABOUT THE NEONATAL SEIZURE REGISTRY RESEARCH PROGRAM? CLICK BELOW.
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Medical Advisory Board Update: Welcome New Members |
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We are excited to welcome the following professionals to our multidisciplinary Medical Advisory Board, helping our organization to move forward our mission:
Dr. Brittney Pryor Craig
- Pediatric Neurology
- Pediatric Sleep Medicine
Tamara Smith
- Pediatric Occupational Therapy
- HIE Parent
Carole Zangari, PhD, CCC-SLP, ASHA Fellow
- Augmentative & Assistive Communication
Tina Moreno, MA, CCC-SLP
- Augmentative & Assistive Communication
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Join our Partners in Hope program |
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We are so grateful to our current Partners in Hope who are investing in the future of our organization:
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Learn more about partnership and sponsorship opportunities to accelerate Hope for HIE's mission by contacting David Ford: |
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Hope for HIE Amazon Storefront |
We are so excited to aggregate our favorite developmental products, recommended books for parents, caregivers and children, and more on our new Amazon Storefront.
A portion of every purchase goes right back to Hope for HIE!
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Check out our latest HOPE shirts and other swag! |
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Our signature roast CUP OF HOPE supports the foundation, and employs people with disabilities. |
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