For one night in Los Angeles, 700 people got to hear the hilarious antics of Tracy Morgan and several other comedians while raising awareness and funds for the Hydrocephalus Association’s research, support and education programs.
“My goal is for Adora to be successful and get every opportunity that we do. Because there is no cure, I will work until one is found. I want to be as involved as I can be.”
As we look back and commemorate 30 years of supporting, educating, connecting and informing families, we ask where we would be without our volunteers. Our volunteer leaders across the country have helped weave the rich tapestry of our HA history. This week we sit down with our Virginia Support Group Leader, Annie Mason.
One of the ways Hydrocephalus Association provides direct support to individuals who have been diagnosed with hydrocephalus, as well as to their family, friends and caregivers, is through our local support groups. This past year, we launched 8 new support groups and hosted 77 meetings in 25 states. In addition, we initiated numerous closed groups on Facebook that provide a space for individuals to connect, share information give and receive support 24/7.
The Legacy Society provides an opportunity for supporters to ensure the organization’s research, support, advocacy and education work continues by placing a “future” gift to the Hydrocephalus Association in their wills, trusts or estate plans. As a member, you will demonstrate your commitment to HA’s mission to eliminate the challenges of hydrocephalus and help to […]
Tracy Taback shares her story about being diagnosed with hydrocephalus. Since her ETV, she has become a Support Group Leader in Connecticut and an avid spokesperson to raise awareness of hydrocephalus.
Hydrocephalus Association launches Spanish-language pages on hydrocephalus The Hydrocephalus Association proudly announces the launch of our Spanish-language information pages on hydrocephalus. Our launch falls at the midpoint of Hispanic Heritage month (mid-September through mid-October) as well as serves as a celebratory ending to September’s Hydrocephalus Awareness month. The Spanish-language pages provide critical information to Spanish-speaking […]
~Partners Network ~ Hydrocephalus Support Group Meeting Virginia TOPIC: Overview of 12th HA Conference When: Saturday, September 15, 2012 2:30pm to 4:00pm Where: Rappahannock Regional Library England Run branch 806 Lyons Blvd Fredericksburg, VA 22406 Please R.S.V.P. to Annie Mason by Wednesday March 21, 2012 (540) 898-4568 or Richmondsupport@hydroassoc.biz Find our group on Facebook under […]
The Adrian Daily Telegram shares the story of the national recognition Jerry Garcia and his wife Sarah have received by adopting children with medical conditions and special needs. To read the full article, click here.
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 […]
Introduction by Jennifer Bechard, Support Group Liaison Recently, Teens Take Charge Advisory Council member, Nicole Padron, asked the following question on Facebook: “What is some helpful advice that you would give someone who has been recently diagnosed with hydrocephalus?” Teens across the country began sharing their experiences with hydrocephalus as well as advice for individuals […]
By Gina Shaw The following article is reprinted by permission from Neurology Now: www.neurologynow.com, October/November 2011 – Volume 7 – Issue 5 – p 18–20 When the Affordable Care Act was signed into law in March 2010, one of the centerpieces of the plan was the creation of “health insurance exchanges.” These state-by-state marketplaces allow […]
The Hydrocephalus Association (HA) proudly introduces you to some of our outstanding volunteer leaders – the 2011 WALK and Special Event Chairs! These men and women spend countless hours coordinating HA WALKs and special events in their communities. They possess great leadership, passion and initiative which in turn allows HA to increase its investment in […]
Head Above Water By Tracy Taback Today, I am a healthy 31-year-old woman who just happened to be born with hydrocephalus (water on the brain). My condition lay dormant and went undetected for 23 years until one morning I woke up and drove to work but was unable to get out of my car when […]
We asked on our Hydrocephalus Facebook community page: “Do you prepare a list of questions to ask your or your child’s doctor before the appointment?” We were so pleased to see the majority of our community members answered “yes” to last week’s Facebook poll question, as it is very critical to be prepared before a […]
The following information was kindly brought to our attention by the National Health Council (NHC) and Janet Miller, MPA on behalf of the Centers for Medicare & Medicaid Services. As you know, the Affordable Care Act (ACA) created the Pre-Existing Condition Insurance Plan (PCIP), which will offer health insurance coverage for people with chronic conditions […]
by Pip Marks, HA Director of Support and Education Changes in eye vision of any kind are critical to report as they may well be related to shunt failure/malfunction. Consult with your doctor, neurosurgeon or ophthalmologist, immediately if you ever experience any kind of change in your vision: blurriness, gray outs, double vision, etc. Increased […]