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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

    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: info@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.

    Contact: Felicity Gorham & Elana Schwartz

    Group Lead: Patricia Jillson

    Email: info@hydroassoc.org

    Contact: Trish Bogucki

    Email: trish.bogucki@hydroassoc.org

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

    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
    AZPhoenixChanda McRoberts
    CODenverSteph Munch
    FacebookCTHartfordTracy Taback
    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
    FacebookMEPortlandKristen Melanson
    FacebookMIOnline info@hydroassoc.org
    FacebookMNMinneapolisJennifer Bulthuis
    FacebookMOOnlineinfo@hydroassoc.org
    FacebookNCOnlineinfo@hydroassoc.org
    FacebookNDFargo (& Moorhead, MN)Briana Scearcy
    NEOmahaCrystal McLaughlin
    FacebookNJJersey ShoreCarly Weisman and Kristin Huston
    Facebook
    Facebook
    NYWestern

    New York City
    Toddie Rogers

    Elana Schwartz & Sarah Delahousse
    FacebookOHCleveland info@hydroassoc.org
    FacebookOKOklahoma CityAmy Hendrix and Jessica Walton
    FacebookORPortland (& Vancouver, WA)info@hydroassoc.org
    Facebook
    Facebook
    PAPittsburgh (Online)

    Eastern

    Central
    info@hydroassoc.org

    Sierra Smith & Caitlin Shemas

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

    Memphis
    info@hydroassoc.org

    info@hydroassoc.org
    FacebookTXAustin (Online)

    Dallas

    Dallas

    Houston
    info@hydroassoc.org

    Drew Null

    Gary Chaffee

    Heather Bruen
    FacebookUTSalt Lake CityKelly Varga
    FacebookVAVirginia BeachNatasha Buchanan and Amanda Grant
    Facebook WAOnlineinfo@hydroassoc.org
    Facebook WILa CrosseToni Travline