Community Network

It’s important to know that you’re not alone as you deal with hydrocephalus. The Hydrocephalus Association’s Community Network provides localized support, education and empowerment through community. Our network hosts educational events, support group meetings and other gatherings that enable individuals and families to connect.

We encourage you to explore the resources available in your area. Be informed and stay connected!

Our Community Network is vital to the continued strength of the Association. If there’s not a Community Network in your area, and you’re interested in learning more please contact support@hydroassoc.org

 

Online Network State City/Market Category Contact
Facebook small AK  Anchorage All Ages Kendra Chavez
Facebook small AL  Birmingham Online info@hydroassoc.org
Facebook small AR Online info@hydroassoc.org
Facebook small AZ Phoenix All Ages Chanda McRoberts
Phoenix NPH Maggie Bobrowitz
Facebook small CA Los Angeles Online info@hydroassoc.org
Facebook small  Bakersfield Online Only Linda O’Hotto
 Facebook small San Diego All Ages Krishna Jagannathan
Facebook small CO  Loveland All Ages Stacey Dalbey
Facebook small CT Hartford Online Only Tracy Taback
Facebook small DC Washington All Ages Amanda Garzon
Melissa Kopolow McCall
Facebook small DE Middletown All Ages Darlene Turner
Facebook small FL South Online Only info@hydroassoc.org
Central All Ages Cheryl Freestone
Susan Andersen Moore
Facebook small GA Atlanta All Ages Diana Ashworth
Larissa Olivieri
Facebook small  IL Chicago Online Sherry Reising
 Pediatric Katie Cook
Facebook small IN Online info@hydroassoc.org
Facebook small KS Online info@hydroassoc.org
Facebook small KY Online info@hydroassoc.org
Facebook small LA Southeast Online info@hydroassoc.org
Facebook small MA Boston All Ages Jennifer Miles & Sue Wiegers
Facebook small MD Baltimore All Ages Sara Curran-Kellogg
Facebook small ME Portland All Ages Kristen Melanson
Facebook small MI  Detroit  All Ages  Dan Naragon
Facebook small MN Minneapolis Pediatric & Adolescent Jennifer Bulthuis
Facebook small MO  St. Louis All Ages  Lisa Munch
Facebook small NC Charlotte All Ages Summer Minchew
Jennifer Acheson
Facebook small ND Fargo (& Moorhead, MN) All Ages Briana Scearcy
Facebook small NY Western All Ages Toddie Rogers
Long Island All Ages Mia Padron & Jackie Davidson
 New York City  All Ages Karly Rodriguez & Elana Schwartz
Facebook small OH  Cleveland All Ages  Amber Frost
Facebook small OK Oklahoma City All Ages  Amy Hendrix and Jessica Walton
Facebook small OR Portland (& Vancouver, WA) Online info@hydroassoc.org
Facebook small PA Pittsburgh Online info@hydroassoc.org
Facebook small Northeast All Ages Sierra Smith
Facebook small RI Providence All Ages Jessica Young
Facebook small SC Online Hannah Dill
Facebook small TN Chattanooga All Ages Chara McLaughen
Memphis Online Danielle Olison
Facebook small TX Dallas All Ages info@hydroassoc.org
Houston Pediatric/Adolescent Jamie Wright
Facebook small UT Salt Lake City All Ages Kelly Varga
Facebook small VA Richmond All Ages Annie Mason & Kayleigh Brodeur
Facebook small WA Bremerton Pediatric Hydrocephalus & Spina Bifida info@hydroassoc.org
Facebook small Seattle Pediatric Lori Poliski
Seattle Support Group Website
Facebook small Eastern WA All Ages Katie Reich
Facebook small  WI Milwaukee Online Anya Verriden
Facebook small La Crosse Online Tony Travline
NIGERIA Lagos Children & Families with Hydrocephalus & Spina Bifida Afolabi Fajemilo Festus Fajemilo Foundation

 

The following section is for Comments only. If you have a question or need educational resources please contact support@hydroassoc.org. Thank you!

7 Comments for : Community Network
  1. Reply

    Hi,
    It looks like there are no communities for Reno/Sparks NV area. Is there anyone or groups from this area with an adolescent that was born with Hydrocephaly and is shunted? He also had a TBI 7/31/16 and is experiencing different emotions and behaviors.
    Thanks!

    • Dodo
    • May 17, 2017
    Reply

    I have a 15 month boy who’s diagnosed with hydrocephalus since 4 month old .he had two MRI done . His last one was when he turned a year . The water level is still th same .his head circumference as today is 53.5 inches. Still hasn’t gotten a shunt yet .dt said water will dried out but he is having crossed eye watery eyes n since may 6 he is eating less .so have anyone lived with it n the water dried out please

    • veronica araujo salas
    • October 18, 2016
    Reply

    hola vivo en mexico y tengo un bebe de 4 meses con hidrocefalia, nacio con este problema. lo operaron apocos dias de nacido le pusieron su valvula pero quisiera saber mas acerca de esta enfermedad, tengo tantas inquietudes.

    • Mustapha Drammeh
    • September 14, 2016
    Reply

    My name is Mustapha Drammeh and I am writing on behalf of my sister Mariama Drammeh, born May 22, 1983.

    Mariama was diagnosed with an undisclosed illness at the age of 12 years that ultimately impaired her vison and is in need for medical assistance. She is originally from The Gambia, West Africa, and is currently in the United States on visitor status.

    She had two surgeries since December 1993 and June 1994 prior to loosing financial assistance to continue her treatment. Currently, her medical condition is developing new signs that are rapidly spreading all over her body.

    Therefore, after several failed attempts to see a doctor via the UW Public Health system, I decided to drive her down to the Dean East Urgent Care Clinic this morning September 3, 2016 to further evaluate her condition.

    The Physician Assistant who was unfamiliar with her medical condition made some recommendations to further evaluate her condition through qualified specialists. Given the intricacy of her medical condition and the kind of resources required to examine or treat her medical condition, she also gave us Dean Health’s Patient Relations contact to see what resources are available for help.

    And so we are kindly seeking help in any shape or form to find treatment for Mariama as soon as possible. Her details are available on the Chart in case you need further information. We hope to hear from you soon.

    Thank you!

    Mustapha Drammeh
    E:mdrammeh2@gmail.com
    C: 1(608) 658-5426

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    • Dr. Harry Lewis
    • August 9, 2016
    Reply

    Both my wife and her brother were stricken with Hydrocephalus.There is a proven genetic connection of the disease. Both my brother in law and my wife were in nursing homes that were totally ignorant of hydrocephalus, and they did not get the treatment they needed.

  2. Reply

    Are there any groups in New Jersey?

      • Mark Degenhart
      • March 16, 2017
      Reply

      I’m in Red Bank area. My wife has shunt. Interested in starting a NJ group together?

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