Table of Contents:
    Add a header to begin generating the table of contents

    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: Elizabeth Holthouse Leader

    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: Every Saturday

    Contact: Liz 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: Dani Lucchese, Sara Stottler, and Janay Harris, 30s CN Co-Leaders

    Email: info@hydroassoc.org


    Flourishing in Mid-Life: Group for Women Age 40–65!

    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- 65 navigating the journey of hydrocephalus and mid-life.

    When: 4th Thursday of the month

    Contact: Patricia (Patty) Jillson, Lynn Beirl and Kara Schmidt, Group Co-Leaders

    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 Tuesday of the month

    Contact: Susan Fiorella and Jessica Abercrombie

    Email: info@hydroassoc.org


    Supportive Families Embracing Disability Journeys

    OPEN TO parents of young adult and adult children ages 19 and above living with hydrocephalus and any type of disability.  Welcome to a supportive haven for parents! We embrace all parents navigating the complexities of hydrocephalus and intellectual and developmental disabilities in their adult children. Our inclusive community recognizes the diverse ways hydrocephalus affects our loved ones. If you're supporting an adult children with intellectual disability/learning challenges, autism, and/or physical disability, you're not alone. Join fellow parents on a shared journey to connect, discuss, and find solace in understanding each other's experiences as caregivers, advocates, and individuals.

    When: 3rd Thursday 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 every 3 months

    Contact: Alison Kandrovy

    Email: info@hydroassoc.org

    Grupo de habla hispana
    ¡Únete a nosotros en nuestro primer encuentro de apoyo en línea!

    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: 4th Tuesday every 3 months

    Contact: Mario Acosta

    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

    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: Patricia (Patty) Jillson and Lynn Beirl

    Email: info@hydroassoc.org

    Contact: Trish Bogucki

    Email: trish.bogucki@hydroassoc.org

    Contact: Lauren Eng, Mackenzie Holcomb, Genesis Espaillat, Kaitlyn McWilliams, & Elizabeth Holthouse

    Email: info@hydroassoc.org

    Contacto: Sukanty Oliva

    Contact: Deborah Norris

    Email: militarycommunitynetwork@hydroassoc.org

    Nigeria, Lagos

    Children & Families with Hydrocephalus & Spina Bifida

    Festus Fajemilo Foundation

    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.

    Online NetworkStateCity/MarketContact
    AKOnlineinfo@hydroassoc.org
    ALOnlineinfo@hydroassoc.org
    ARNorthwestKipp Coco
    AZOnlineinfo@hydroassoc.org

    CALos Angeles

    Northern California
    info@hydroassoc.org

    Lindsey Wilder
    CODenverSteph Munch & Cheryl Morris
    FacebookCTOnlineinfo@hydroassoc.org
    FacebookDCWashingtonAmanda Garzon & Susan Fiorella
    FacebookDEMiddletownDarlene Turner
    FacebookFLSouth

    Central

    Miami
    Tiffany Everett

    Jessica Coffaro

    Genesis Espaillat
    FacebookGAAtlantaDylan Webster
    Facebook IDBoiseCarole Freund
    Facebook ILChicagoFelicity Gorham
    FacebookINIndianapolisSarah McClellan
    FacebookIA Onlineinfo@hydroassoc.org
    FacebookKS Onlineinfo@hydroassoc.org
    FacebookKY Onlineinfo@hydroassoc.org
    FacebookLA Onlineinfo@hydroassoc.org
    FacebookMABostonJennifer Miles & Sue Wiegers
    FacebookMDBaltimoreSara Curran-Kellogg
    FacebookMEOnlineinfo@hydroassoc.org
    FacebookMIOnline info@hydroassoc.org
    FacebookMNMinneapolisJennifer Bulthuis
    FacebookMOOnlineinfo@hydroassoc.org
    FacebookMTMarionEilish Hanly
    FacebookNCOnlineinfo@hydroassoc.org
    FacebookNDFargo (& Moorhead, MN)Briana Scearcy
    NEOmahaCrystal McLaughlin & Michelle Keebler
    FacebookNJJersey ShoreCarly Weisman & Kristin Huston
    FacebookNMAlbuquerqueMallory Bauman
    Facebook
    Facebook
    NYWestern

    New York City
    Toddie Rogers

    Elana Schwartz & Sarah Delahousse
    FacebookOHCleveland info@hydroassoc.org
    FacebookOKOnlineinfo@hydroassoc.org
    FacebookOROnlineinfo@hydroassoc.org
    Facebook
    Facebook
    PAPittsburgh (Online)

    Eastern

    Central
    info@hydroassoc.org

    Sierra Smith & Caitlin Shemas

    Jackie Mullock
    FacebookRIOnlineinfo@hydroassoc.org
    FacebookSCCharlestonLaci Robinson & Lisa Robinson
    FacebookSDOnlineinfo@hydroassoc.org
    FacebookTNChattanooga

    Memphis
    info@hydroassoc.org

    info@hydroassoc.org
    FacebookTXAustin (Online)

    Dallas (Pediatric & Adult)

    Dallas (NPH)

    Houston

    Midland
    info@hydroassoc.org

    Drew Null

    Gary Chaffee

    Heather Bruen

    Shelby Riley

    FacebookUTSalt Lake CityKelly Varga
    FacebookVAVirginia BeachNatasha Buchanan
    Facebook WAOnlineinfo@hydroassoc.org
    Facebook WILa CrosseToni Travline

    Was this article helpful?

    Yes
    No
    Thanks for your feedback!