Support & Education

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New Website Launched to Help Community Thrive

In 2021, we launched a brand new website filled with resources and tips to help individuals manage their day-to-day life of living, or caring for someone, with hydrocephalus. The site has something for everyone – whether you are newly diagnosed or have been on this journey for a long time.

The website features sections aimed at different age groups and different stages of life, including:

Newly Diagnosed
This section offers guides and next steps tailored to specific age groups and life stages, and includes helpful tips and tools to help individuals navigate the complexities of living, or caring for someone with this condition.

Daily Life
This section aims to help individuals learn how to manage the day-to-day symptoms and associated problems they might encounter so they can make informed decisions regarding lifestyle and medical care.

Caring for Your Child
This area provides essential tools and resources for parents, to help them advocate for their child, make informed decisions, and manage their child’s daily needs.

Life with NPH
A diagnosis of Normal Pressure Hydrocephalus (NPH) is complex and frustrating. Staying informed about the condition is essential to managing care. Here, our community can find resources, tips, and real-life stories, that will enable them to make smart choices about their care so you can learn to thrive with this condition.

Life Transitions
This area offers tips and guidance to help individuals with hydrocephalus handle major milestones, such as attending high school and college, living independently or moving on from pediatric to adult healthcare.

Preparing for Surgery
This section provides information about shunt and ETV procedures and what to expect post-surgery.

Expanding our Online Learning Opportunities

With the COVID-19 pandemic still affecting the nation, we knew we needed to create more opportunities for our community to come together and learn from the safety of their own homes. So in 2021, we expanded our webinar offerings, and offered virtual meetings for different communities across the country.

In 2021, we hosted 170 virtual Community Network gatherings and educational meetings. These gatherings were aimed at different age groups, such as teens, young adults, adults with hydrocephalus, adults with Normal Pressure Hydrocephalus, and parents. The gatherings gave adults and young people an opportunity to meet their peers and make new friendships.

We also offered 12 educational webinars, including our first-ever webinar in Spanish. Our webinars touched on a variety of topics – from shunt obstructions and hydrocephalus drugs currently in development to how to transition from pediatric to adult medical care, and Normal Pressure Hydrocephalus.

Thirteen Academic Scholarships Awarded

HA’s scholarship program was established in 1994 to provide financial assistance to capable and promising teens and young adults who live with the ongoing challenges and complexities of hydrocephalus. In 2021, we awarded scholarships to 13 bright young people to help them pursue their academic goals.

These remarkable young adults are not only successfully managing their hydrocephalus, they excel in the classroom and give back to help their local communities.

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Tino Balestrini

Tino will attend the University of Windsor where he will complete a five-year dual degree program, Bachelor of Arts (Psychology)/Bachelor of Education, in Early Childhood Education. His goal is to become an elementary school teacher and eventually a school principal.

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Emily Deitsch

Emily is pursuing a degree in Sociology at Mount Royal University to eventually become an Art Therapist.

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Jinean Dirbas

Jinean will be attending a two-year program at Las Positas Community College and then transferring to a four-year university to major in Biology with the goal of eventually attending a nursing program.

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Robert Lodge

Robert has set his sights on attending the New Jersey Institute of Technology to major in Biochemistry with a premedical focus. His ultimate goal is to become a neurosurgeon so he can help find a cure for hydrocephalus and improved treatment options.

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Elizabeth Philpot

Elizabeth is studying to turn her love of music into a career. She is currently a freshman at Baldwin Wallace University in Berea, OH, studying music therapy.

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Malini Popat

While Malini hasn’t decided on a major yet, she is certain of one thing – that she wants to pursue a career where she can help other kids be confident and overcome challenges. She applied at several universities and plans on majoring in either Psychology, Economics, or Education.

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Eric Rhee

Eric graduated from UC Berkeley and is now in medical school at Temple University/St. Luke’s School of Medicine. He is studying to become a doctor and possibly even a professor so he can help shape future medical professionals.

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Kristen Samar

Kristen plans to attend Salisbury University to major in elementary education, where she can gain the necessary certifications to become a teacher who helps, inspires, and educates.

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BriAnna Saner

BriAnna will attend Kent State University to major in Speech Pathology and Audiology. She wants to help children and adults with disabilities overcome hardships.

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Antonio Sanfilippo

Antonio was accepted at San Diego State University, where he will major in Business Administration to pursue his dream of becoming a sports equipment manager.

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Claire Scognamiglio 

Claire is studying to become an elementary special education teacher at the University of Missouri at Columbia (Mizzou).

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Gabe Tejada

Gabe will be completing his first two years of college at Truckee Meadows Community College in Reno and then transferring to the University of Nevada, where he will major in Education to become a high school history teacher.

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Amelia Vacca

Amelia is excited to attend James Madison University to pursue her dream of becoming an Occupational Therapist.

PARTNER SPOTLIGHT

Medtronic

Medtronic is a longtime partner of the Hydrocephalus Association, contributing more than $1 Million to HA programs over the years. Their support ranges from National Sponsorship of our annual WALK to End Hydrocephalus, to sponsoring and providing education at Kids Camp during CONNECT, our biennial National Conference on Hydrocephalus, to sponsoring our educational webinar series in 2021. They are a valued partner who shares our desire to improve the lives of those who are impacted by hydrocephalus, and continue to work with us on creative ways to do so.

Dominique Worthington

Vice President, CSF Management & Critical Care

“Medtronic is committed to long-standing support of the Hydrocephalus Association (HA) and the important work they do for patients and families living with hydrocephalus.  Medtronic supports the critical work HA sponsors because research is the best hope for understanding this life-long, chronic condition. We are hopeful that their efforts will ultimately result in more effective therapies and minimize the need for the multiple brain surgeries hydrocephalus patients undergo in their lifetime."

Thank You to Our Sponsors

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