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    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

     Gary Chaffee


    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


    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




    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


    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




    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


    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




    Adults with Hydrocephalus Meet-Up (FL, GA, 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 




    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 


    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

    Contact: Felicity Gorham & Elana Schwartz

    Group Lead: Patricia Jillson


    Contact: Trish Bogucki


    Contact: Lauren Eng, Ian McDonough, Genesis Espaillat, Kaitlyn McWilliams, & Elizabeth Holthouse

    Contacto: Sukanty Oliva

    Contact: Deborah Norris


    Nigeria, Lagos

    Children & Families with Hydrocephalus & Spina Bifida

    Festus Fajemilo Foundation

    Contact: Afolabi Fajemilo


    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


    Online Network State City/Market Contact
    AK Anchorage
    AL Birmingham
    AR Northwest Kipp Coco
    AZ Phoenix Chanda McRoberts
    CA Los Angeles
    Ventura Tony and Lauren Napoli
    CO Denver Steph Munch
    Facebook CT Hartford Tracy Taback
    Facebook DC Washington Amanda Garzon & Susan Fiorella
    Facebook DE Middletown Darlene Turner
    Facebook FL South Tiffany Everett
    Central Jessica Coffaro
    Miami Suany Ortiz & Genesis Espaillat
    Facebook GA Atlanta Dylan Webster
    Facebook  ID Boise Carole Freund
    Facebook  IL Chicago Felicity Gorham
    Facebook IN Indianapolis Sarah McClellan
    Facebook IA
    Facebook KS
    Facebook KY
    Facebook LA
    Facebook MA Boston Jennifer Miles & Sue Wiegers
    Facebook MD Baltimore Sara Curran-Kellogg
    Facebook ME Portland Kristen Melanson
    Facebook MI Detroit
    Facebook MN Minneapolis Jennifer Bulthuis
    Facebook MO St. Louis
    Facebook NC Charlotte Margaret Marshall
    Facebook ND Fargo (& Moorhead, MN) Briana Scearcy
    NE Omaha Crystal McLaughlin
    Facebook NJ Jersey Shore Carly Weisman, Kristin Huston, and Dorothy Walsh-Calabro
    Facebook NY Western Toddie Rogers
    Long Island Mia Padron & Jackie Davidson
    Facebook New York City Elana Schwartz & Sarah Delahousse
    Facebook OH Cleveland
    Facebook OK Oklahoma City Amy Hendrix and Jessica Walton
    Facebook OR Portland (& Vancouver, WA)
    Facebook PA Pittsburgh
    Facebook Eastern Sierra Smith & Caitlin Shemas
    Central Jackie Mullock
    Facebook RI Providence Jessica Young
    Facebook SC Columbia
    Charleston Laci Robinson & Lisa Robinson
    Facebook SD Sioux Falls
    Facebook TN Chattanooga
    Facebook TX Austin
    Dallas Drew Null
    Dallas Gary Chaffee
    Houston Heather Bruen
    Facebook UT Salt Lake City Kelly Varga
    Facebook VA Richmond Kelly Brandenburg-Westcott
    Facebook  WA Seattle
    Eastern WA
    Facebook  WI Milwaukee
    La Crosse Toni Travline