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 All Ages Janet Han & Andrea Sloan
Facebook small Bakersfield Online Only Linda O’Hotto
 Facebook small San Diego All Ages Krishna Jagannathan
Facebook small Ventura All Ages Tony Napoli
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 All Ages Sarah McClellan
Facebook small IA All Ages Megan Barry
Facebook small KS Online info@hydroassoc.org
Facebook small KY Online info@hydroassoc.org
Facebook small LA 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  info@hydroassoc.org
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 NJ Jersey Shore All Ages Carly Weisman, Dana Weisman and Dorothy Walsh-Calabero
North New Jersey All Ages Trish Bogucki
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 Eastern All Ages Sierra Smith
Facebook small RI Providence Online 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 Drew Null
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 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!

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18 Comments for : Community Network
  1. Reply

    Are there support groups in the Hampton Roads area?

    • Maria luisa Munoz
    • July 31, 2017
    Reply

    Alguien en Espanol que me pueda llamar?
    O agregar a grupos serca de aqui donde vivo?
    Visalia, California.

    • Pat Papa
    • June 13, 2017
    Reply

    I had shunt surgery in Dec, 2016 for hydrocephalus. I am interested in joining a support group. I live in Hunterdon County, NJ. Does anyone know of a support group in this area?

      • Trish Bogucki
      • October 10, 2017
      Reply

      Hi Pat: I had shunt surgery in May of 2015. I am not aware of any support groups in NJ but am looking into forming one – possibly online since NJ is so spread out. I have asked the HA team for information on next steps and hopefully will be in touch soon.

    • Vera Kern
    • June 13, 2017
    Reply

    Are there any groups in the Greater Toronto area of Ontario, Canada?

  2. Reply

    I do not see a Colorado Springs group. It took 1 decade, and 3 visits to different neurosurgeons, to have my loved one, get a primary diagnoses of NPH. The name seems i contrary to the problem of abnormal cfp pressure. I wonder which stunt is the best for a 66 year old?

    I seek names of shuts in places and how they work. 719.4653454. Also how much time must be taken off of work after the procedure? and if their is medication or natural supplements that work, for nph? As a care giver, I would be grateful for Any first hand information on this topic.

      • Trish Bogucki
      • October 10, 2017
      Reply

      Jan: I just saw your post and hope you have gotten good direction from your loved one’s doctor. To answer your questions, I had a shunt implanted when I was 66. It is a Medtronic shunt with a programmable valve. Now it’s two+ years later and so far so good. I was able to return to working from home a few days after I was released from the hospital, and I was back in the office inside of two weeks. I am not aware of any supplements that would be helpful but do ask your doctor. I wish you luck on this journey!

  3. 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!

      • Tania Roth
      • August 17, 2017
      Reply

      I have a shunt myself and live in Reno/Sparks.

      • Tania Roth
      • August 17, 2017
      Reply

      I have worked with children with emotional concerns, some with a shunt.

    • 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.

      • Monica
      • June 19, 2017
      Reply

      Hi yo vivo en Nj tengo un niño que tiene 6 años cual quier pregunta estoy a la orden mi nombre es monica

    • 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.

  4. 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?

        • Trish Bogucki
        • October 3, 2017
        Reply

        Mark and E.L.: I’m interested in joining or perhaps forming a NJ group. I live in northern NJ so Red Bank is rather far. Maybe we need a couple of local groups and then we could get a bigger group together once in a while? I’ll ask the HA team how we might get started.

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