Find a Community Network
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: Olivia Maccoux and Tomas Rodriguez Teen CN Co-Leaders
Email: info@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: Every Saturday
Contact: Lauren, Kaitlyn, Ian, Elizabeth, Genesis, and Sierra 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: 3rd Friday of the month
Contact: Dani Lucchese and Janay Harris, 30s CN Co-Leaders
Email: info@hydroassoc.org
Flourishing in Mid-Life: Group for Women Age 40–59!
Hydrocephalus is a complex and unpredictable condition that requires lifelong management. For women in particular, middle-age 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- 59 navigating the journey of hydrocephalus and mid-life.
When: 4th Thursday of the month
Contact: Elana Schwartz, NYC Community Network Leader or Felicity Gorham, IL Community Network Leader
Email: info@hydroassoc.org
Parents of Middle School Age Children Group
Is your child starting or continuing in middle 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 Monday of the month
Contact: Susan Fiorella and Sonja Niemi
Email: info@hydroassoc.org
Parents Supporting Parents of Adult Children with IDD
OPEN TO all parents of adults living with hydrocephalus and intellectual and developmental disabilities. Our community is diverse in the many ways and degrees that hydrocephalus impacts our loved ones. For those of us supporting children who are adults with intellectual disability (ID), physical disability, and/or learning challenges (LD), the road can be challenging and lonely. Questions of managing their care, self-advocacy, independent living, and finding success in the workforce all loom large. Join other parents on a similar journey for connection and great discussion.
When: 4th Wednesday of the month
Contact: Jackie Mullock, PA Community Network Leader
Email: easternpacommunity@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 of the month
Contact: Alison Kandrovy
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: Every Saturday
Contact: Sierra Smith, PA Community Network Leader or Sara Curran-Kellogg, MD Community Network Leader
Email: easternpacommunity@hydroassoc.org
Adults with Hydrocephalus Meet-Up (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 Community Network Leader
Email: info@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
Georgia HANG–OUT
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: Dylan Webster, Atlanta Community Network Leader
Email: atlantacommunity@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
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.
Contact: Lauren Eng, Mackenzie Holcomb, Genesis Espaillat, Kaitlyn McWilliams, & Elizabeth Holthouse
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.
