Hydrocephalus Association Support Group Partners, Pt. 1

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By Jennifer Bechard, Support Group Liaison

Support groups are a vital and cherished resource to our hydrocephalus community. The Hydrocephalus Association currently has 28 support groups that provide open forums and educational meetings to individuals touched by hydrocephalus throughout the country. Support Group Leaders each have their own experiences with hydrocephalus and understand the trials and struggles surrounding the condition. These fearless individuals take the time to provide a welcoming space for discussion and knowledge as they support those affected by hydrocephalus. We invite you to meet some of our leaders:


Lori Smith – Support Group Chair: Detroit, MI

lori smithI am Lori Smith; my daughter has hydrocephalus and spina bifida.  She is now ten and her only revision was at 3 months old.  You can knock on wood for us now.  My family and I volunteer with the Detroit Support Group.  I recently became the co-leader for the support group and I am still adjusting to this new role.  I first stumbled across the Hydro WALK in the Detroit area and my first thought was finally someone who knew what I was talking about.  After the first WALK I started looking for something more than meeting once a year.  Then I became more involved with the Hydrocephalus Association.  I truly enjoy working with everyone I have met through the organization for as much as it is growing it still feels like an extended family.


Danielle Netherton – Support Group Chair: Chico, CA

danielle nethertonDanielle Netherton, wife to Pete Netherton and mother to a one year old with hydrocephalus, is an elementary school teacher who became a stay at home mom. Danielle and her husband love taking their son, Tom, to the park for walks and anywhere outdoors with their dog Georgia.  Danielle is a dedicated, passionate volunteer who devotes her free time to leading the Hydrocephalus Association’s support group in Chico, CA. Every last Saturday of every other month the Netherton family opens up their home to children, adolescents, and adults living with hydrocephalus.  This past September, Danielle helped a teenager, Wyatt Barris, assemble a hydrocephalus awareness day at his local high school. Together they educated and informed students and faculty. They are proud and loving parents. We are grateful to have them as volunteers for HA.


Elizabeth Norris – Support Group Chair—Charlotte, NC

elizabeth norrisI am a new Support Group Chair to the Hydrocephalus Association, and held North Carolinas’ first support group meeting in May 2011.  Raising awareness, learning about, and informing others of hydrocephalus is what I love to do.  I was diagnosed with hydrocephalus when I was 4 weeks old, and since then I have had 5 shunt revisions.   I am 20 years old and a student at Lenoir Rhyne University studying Elementary Education. I love my life and I know that I am unique in my own way.  I am fortunate that I do not have complications due to hydrocephalus, but because it is very unpredictable I am always alert.  I love to help others, especially when it is something so close to my heart.  I have become connected with many that are affected by hydrocephalus, through HA WALKs, facebook groups, and simply just telling my story. In 2008, I planned and organized, on my own, a hydrocephalus WALK in my hometown. I have come to appreciate how much the HA did for my parents in the early stages of my diagnosis. Support and knowledge from others affected by hydrocephalus is the key to handling this life-long condition. I am excited to have joined HA as a Support Group Chair and to be a part of continuing this support.


Lori Poliski – Support Group Chair: Seattle, WA

lori poliskiLori Poliski studied journalism at the University of Delaware and has a Master’s degree in education. She worked as a marketer for software companies for many years before she became an elementary school teacher.  After she had William in 2005, who has had five brain surgeries as a result of his hydrocephalus caused by prematurity; she and her husband Paul Gross, who is the current board chair of HA,  wanted to meet other parents with children who had hydrocephalus.  There was no pediatric support group in the Northwest so they founded one in 2006, Children’s Hydrocephalus Support Group, in conjunction with Seattle Children’s Hospital neurosurgery department.  (www.hydrosupport.org)

Meetings are held approximately five times a year with a family picnic held in the summer.  Typical meetings host about 20-25 members and childcare is provided so children with hydrocephalus can meet other children with hydrocephalus.  Meetings alternate between those with a speaker and those just for members. The meetings are held at the hospital.  Leslie Kempthorne currently manages the support group meetings and Lori provides childcare with help from hospital junior volunteers.

Lori and Paul also founded the Hydrocephalus Research Guild (www.hydroresearch.org) in 2006 which benefits research efforts at Seattle Children’s Hospital.  The guild has raised over $500,000 since its inception and funds are used for both clinical and bench science at the Seattle Children’s Research Institute. www.seattlechildrens.org/research/

They have two children, Claire and William, and live on a small farm with horses, goats, a cat and a dog outside of Seattle, WA.


If you are interested in becoming involved with the support groups please contact Jennifer Bechard at Jennifer@hydroassoc.com.

5 Comments for : Hydrocephalus Association Support Group Partners, Pt. 1
    • Chrina serrant
    • November 12, 2017
    Reply

    Hello, Iam a mother of a two year old daughter with hydrocephalus. An I wanted to know is there any support groups in Decatur Alabama, or mothers out here that I could reach out to?

    • Deborah De Santi
    • February 8, 2012
    Reply

    I was dignose with Hydrocephalus at age 51. I had surgery back on 3/7/11.
    I will have my first annual CT Scan on Feb 10,2012.
    My Doctor’s nurse told me that if there is a problem …after he looks at the CT report, he will schedule me to see him but if I have a question or concern I should talk with my primary Doctor.
    I am in Salt Lake City, Utah. Is any support group here?.
    I need one.

    Thank you.
    Deby

  1. Reply

    I was diagnosed with Normal Pressure Hydrocephalus after being born three months premmature. As of February 2011 I have had seven vp shunt revisions. Currently I am the creator, Illustrator and author of the educational young adult series, Gesso Squad.

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