It’s important to know that you’re not alone as you deal with hydrocephalus. The Hydrocephalus Association’s Community Networks, also known as support groups, provide localized support, education, and empowerment through the community. Our networks host in-person and virtual educational events, networking opportunities, and other social gatherings that enable individuals and families to connect.
Virtual Meetups: National
Dallas/National NPH Meet-Up
Join us for an NPH Community Network get-together! We all need to see old friends, and new faces, and have some fun with a community that knows us in a way that only those living the NPH journey do. We welcome all those living with NPH in the State of Texas and throughout the USA!
When: 3rd Wednesday of the month
Contact: Gary Chaffee
Email: dallasnphcommunity@hydroassoc.org
Teens Hang-Out
Come meet other teens with the condition! We'll hang-out, maybe play an icebreaker game, talk, and hopefully make some new friends.
When: 1st Sunday of the month
Contact: Elizabeth Holthouse Leader
Email: info@hydroassoc.org
Middle School Crew Chat
Come meet other middle school tweens and teens with the condition! We'll hang-out, maybe play an icebreaker game, talk, and hopefully make some new friends.
When: 2nd Sunday of the month
Contact: Erika & Jaxon (Middle Schoolers), Sierra Smith, HA Staff Co-Leaders
Email: info@hydroassoc.org
Breaking Barriers Men's Talk (Adults 19 and older)
This group is a safe place where men, ages 19 and older, can share their experiences, support one another, and enjoy the company of those men that understand the journey of living with hydrocephalus.
When: 4th Wednesday of the month
Contact: Alex Trujillo and Patrick Sullivan, Peer Support Volunteers and Group Co-Leads
Email: mensgroup@hydroassoc.org
Young Adults in their 20s Meet-Up
Come hang out with us and meet other young adults in their 20s living with hydrocephalus. We will have fun intros, icebreakers, and conversation. Let’s get to know each other!
When: 2nd and 4th Saturday
Contact: Pedro, Sarah, Stacy, and MacKenzie 20s CN Co-Leaders
Email: info@hydroassoc.org
30ish–Living Life to the Full HANG-OUT
Join us for a chance to connect with others who share similar experiences. This group will be a place to learn, share, and support others ages 29–40 navigating the journey of hydrocephalus. We all need to see old friends, new faces, and have some fun with a community that knows us in a way that only those living the hydrocephalus journey do.
When: Every 3 Months on the 3rd Saturday
Contact: Sara Stottler, Janay Harris, and Liz Holthouse, 30s CN Co-Leaders
Email: info@hydroassoc.org
Sharing the Journey Women's Group Age 40+!
Hydrocephalus is a complex and unpredictable condition that requires lifelong management. For women in particular, it can impact us emotionally, socially, physically, relationally, and professionally in combination with managing the day-to-day challenges of living with a chronic condition. Do you have questions about how hydrocephalus impacts you as you age? Join us for a chance to connect with other women who share similar experiences. This group will be a place to learn, share, and support other women, ages 40 and above, navigating the journey of hydrocephalus.
When: 3rd Saturday of the month
Contact: Patricia (Patty) Jillson and Kara Schmidt, Group Co-Leaders
Email: info@hydroassoc.org
Parents of Teens Meet-Up Group
Is your child starting or continuing in middle or high school? This can be a challenging time for both parents and kids alike. Now would be a great time to talk with other parents at the same point in the journey! Join other parents to exchange experiences about entering and navigating this especially awkward time of life.
When: 2nd Tuesday of the month
Contact: Susan Fiorella and Jessica Abercrombie
Email: info@hydroassoc.org
Supportive Families Embracing Disability Journeys
When: 3rd Thursday of the month
Contact: Jackie Mullock, PA Community Network Leader
Email: easternpacommunity@hydroassoc.org
Building Bonds- Parents of Young Adults
This parent-to-parent group is designed to provide a safe and welcoming space for parents with children ages 19- 29. We will gather together to share ideas, celebrate successes, and navigate the challenges of hydrocephalus in a supportive environment.
When: 4th Sunday of the month
Contact: Tiffany Everett, FL Community Network Leader
Email: southflcommunity@hydroassoc.org
L1CAM Family and Relatives Meet-Up
Finding our way with L1CAM! This group is designed to be a source of encouragement, support, and share helpful resources. Our space to learn more about the impacts of the L1CAM syndrome on families within our community.
When: 3rd Tuesday every 3 months
Contact: Alison Kandrovy
Email: info@hydroassoc.org
La asociación está aquí para apoyar a todos los afectados por la hidrocefalia, incluyendo nuestra comunidad que habla español! Unámonos para construir un círculo de apoyo para nuestras familias.
When: 2do miércoles cada 3 meses
Contact: Mario Acosta y Maleni Alvarez
Email: info@hydroassoc.org
Hydrocephalus and Chronic Pain Meet-Up
People living with hydrocephalus can experience specific types of chronic pain. This group will help you become familiar with the resources available to effectively manage your chronic pain symptoms. Join Dr. Maria Guglielmo as she facilitates engaging group discussions that will provide hope for individuals living with chronic pain.
When: 1st Saturday every 3 months
Contact: Dr. Maria Guglielmo
Email: info@hydroassoc.org
Virtual Meetups: Regional
Adults with Hydrocephalus Meet-Up (DC, MD, VA, PA, DE, NJ)
Lively and engaging conversation! We all need to see old friends, new faces, and have some fun with a community that knows us in a way that only those living the hydrocephalus journey do.
When: 2nd and 4th Saturday of the month
Contact: Sierra Smith and Caitlin Shemas, PA Community Network Co-Leaders or Sara Curran-Kellogg, MD Community Network Leader
Email: easternpacommunity@hydroassoc.org
Adults with Hydrocephalus Meet-Up (GA, FL, AL, SC, MS)
Lively and engaging conversation! We all need to see old friends, new faces, and have some fun with a community that knows us in a way that only those living the hydrocephalus journey do.
When: 4th Sunday of the month
Contact: Jessica Coffaro, FL and Dylan Webster, GA Community Network Leaders
Email: atlantacommunity@hydroassoc.org
Adults with Hydrocephalus Meet-Up (WA, OR, ID, CA, NV, UT, NM, AZ)
Lively and engaging conversation! We all need to see old friends, new faces, and have some fun with a community that knows us in a way that only those living the hydrocephalus journey do.
When: 1st Friday of the month
Contact: Kelly Varga, SLC-UT Community Network Leader
Email: info@hydroassoc.org
Colorado & Wyoming Meet-Up
Lively and engaging conversation! We all need to see old friends, new faces, and have some fun with a community that knows us in a way that only those living the hydrocephalus journey do.
When: 3rd Sunday of the month
Contact: Steph Munch and Cheryl Morris, Colorado Community Network Co-Leaders
Email: coloradocommunity@hydroassoc.org
Orange County NPH Support Group Meeting
In partnership with the Hydrocephalus Association, the Orange County California virtual NPH support group is led by Dr. Jefferson Chen, Director of NeuroTrauma and Vice-Chair of UC Irvine Department of Neurological Surgery. This group has been created to share additional resources, information, and support offered to individuals and families affected by NPH.
When: 4th Monday of the month
Contact: Dr. Jefferson Chen, UCI
Email: ucineurosurgery@gmail.com
North Carolina Meet-Up
Lively and engaging conversation! We all need to see old friends, new faces, and have some fun with a community that knows us in a way that only those living the hydrocephalus journey do.
When: 2nd Thursday of the month
Contact: Sarah Sink, Charlotte Community Network Leader
Email: charlottecommunity@hydroassoc.org
Online Community Networks
Our Community Network is vital to the continued strength of the Association. Find your private online hydrocephalus community! If you are interested in starting an Online Community Network please contact info@hydroassoc.org.
Contacto: Sukanty Oliva
Nigeria, Lagos
Children & Families with Hydrocephalus & Spina Bifida
Contact: Afolabi Fajemilo
Email: info@fesfajfoundation.org
Community Networks by State
We encourage you to explore the resources available in your area. Be informed and stay connected!
If there’s not a Community Network in your area, and you’re interested in learning more please contact info@hydroassoc.org.
