Find a Community Network

In This Article
    Add a header to begin generating the table of contents
    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: 2do miércoles cada 3 meses

      Contact: Mario Acosta y Maleni Alvarez

      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
      FacebookNV Gigi Bertolini
      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

      Sorry, we couldn't find any posts. Please try a different search.