Advocacy
Advocacy Wins for the Hydrocephalus Community
While impeachment still occupies the headlines, it’s not the only thing that happened this past December in Washington, DC. Amidst all the end-of-year chaos, Congress handed the hydrocephalus community a number of big wins!
Congressman TJ Cox Joins Congressional Hydrocephalus Caucus
Caucus will help families in California’s Central Valley impacted by a brain condition that has no cure This week, Congressman TJ Cox (D-CA) announced that he has joined the bipartisan Congressional Pediatric and Adult Hydrocephalus Caucus. The Hydrocephalus Association applauds Representative Cox’s support for our community. His action reflects a welcome commitment to working with […]
The Hydrocephalus Scoop on Capitol Hill
Believe it or not, the impeachment debate isn’t the only thing happening in Washington, DC! Here’s a quick rundown.
Caucus Briefing Educates Members of Congress About Hydrocephalus
Over 60 people attended the Hydrocephalus Caucus Briefing on 10/17. The briefing, hosted by the Hydrocephalus Association and PHF, explored how hydrocephalus impacts patients & how Congress can help.
URGENT: Contact your Member of Congress
We need your help getting members of Congress and their staff to a Congressional Hydrocephalus Caucus briefing on October 17th. Please take a moment to call & e-mail their offices to ask them to attend. You can learn more about the briefing by clicking here. This shouldn’t take more than 10 minutes and is very […]
The Hydrocephalus Scoop on Capitol Hill
Hydrocephalus-related policy issues have been on the move in Congress. We thought we’d give you a quick rundown on what’s going on and how it impacts our community.
How a Changed Congress Could Impact Hydrocephalus
On Tuesday, November 6th, voters went to the polls and made some significant changes to the U.S. Congress. Due to the bi-partisan nature of policy issues impacting the hydrocephalus community, this outcome represents both opportunities and challenges moving forward.
Our Advocacy Efforts on Capitol Hill Worked!
The budget bill recently signed by President Trumps protects and increases funding for several crucial hydrocephalus-related research programs.
Tracking the FY 2019 Spending Bills in Congress
The Hydrocephalus Association joined 35 other patient groups in asking Congress to protect funding for hydrocephalus-related research programs at the Department of Defense (DoD) — and it worked!
Congress Preserves Program Essential to Quality Hydrocephalus Research
Thanks to the efforts of a range of advocates, including the hydrocephalus community, Congress has preserved the Congressionally Directed Medical Research Program (CDMRP).
Watch Recorded Sessions from HA CONNECT 2018!
Miss the 15th National Conference on Hydrocephalus, HA CONNECT? Recordings of the 19 live streamed sessions are now available! Register as a virtual attendee for $20 to access the 19 recordings!
Congressional Action on ADA Legislation
43 brave Senators have stood up against legislative efforts to weaken the Americans with Disabilities Act, and we hope those impacted by hydrocephalus will take a moment to thank them for their efforts.
Tax Overhaul may Affect Charitable Giving and Non-Profits
Congressional efforts to overhaul the tax code could have major implications for charitable giving and non-profit budgets and could lead to reductions in research, advocacy, outreach, and other services.
The Power of Storytelling
Storytelling can be a powerful and influential advocacy tool in getting people to understand the breadth and depth of impact hydrocephalus has on individuals and families.Every person afflicted with Hydrocephalus has a story to tell.
2017 Rally For Medical Research
We are excited to invite YOU to join the HA staff to represent the hydrocephalus community at the 2017 Rally For Medical Research.
Opportunity to Contact Your Senators on Health Care Reform
Are you concerned with provisions of the BCRA that could adversely affect your ability to maintain healthcare coverage? Learn how YOU can be sure your voice is heard.
Healthcare Up for Vote in Senate
Contact your Senator TODAY and urge them to oppose the AHCA before voting ends on Friday. If passed into law, the AHCA as it currently stands would be devastating for individuals with preexisting conditions, like hydrocephalus, and millions of Americans.
Where we Stand on the Issues
On April 10, 2017, the Hydrocephalus Association Board of Directors approved our position statements on key legislative issues. This is how we stand.
The Challenges of Transitioning to Adult Care
HA has long been aware of inequality in care for children and adults with hydrocephalus, and we are taking steps to bridge the gap.
Time to Attend a Town Hall Meeting!
Your representatives will be home May 30th, a perfect time to attend a town hall and advocate for legislation important to the hydrocephalus community.
Hydrocephalus on the Hill
Philip Brooks, a teen HA community member, recounts his experience during Rare Disease Week, when hundreds of people gathered to advocate for hydrocephalus and other conditions.
HA-Nominated Advocate Joins Department of Defense Medical Research Peer Review Board
Barrett O’Connor, a Hydrocephalus Association-nominated patient advocate, is serving on the latest panel reviewing applications for medical research at the DoD.
Seven States Join Congress in Declaring September Hydrocephalus Awareness Month
Connecticut, New York, Virginia, Tennessee, South Carolina, Illinois, and Colorado unite with local leaders of the Hydrocephalus Association to provide awareness for an incurable brain condition affecting over 1 million Americans
Money, Money, Money – Helping Out Without Emptying Wallets
TTC Member Megan Rivkin challenges young people to get involved in advocating and fundraising to increase research efforts and public awareness of hydrocephalus.
Upcoming Webinar – Speak Up! Owning Your Condition
In this webinar, attendees will learn how to educate others about their condition, receiving tips and practical ways to share their story. They will also learn how to take charge and advocate for themselves and the condition.
Advocacy Training for Youth Webinar NOW AVAILABLE
As a young adult, does my voice count? Can I make a difference in the hydrocephalus community? Listen to our latest webinar recording for youth to learn how.
Finding Your Voice: Advocacy Training for Youth Impacted by Hydrocephalus
Ever thought of talking with your local, state or national government representatives about hydrocephalus but you were afraid to start the conversation, didn’t know how, or thought you were too young? Our upcoming webinar is for you!
The Board of Directors Welcomes New Members
The HA Board of Directors meets to set strategic initiatives for 2015, bid farewell to two long-standing members and welcome five new members to serve.
Finding a Voice
Two teens living with hydrocephalus and one sibling share their first conference experiences attending the Hydrocephalus Association’s biennial National Conference on Hydrocephalus.
On the Edge of the Fiscal Cliff: Our Interests in the Debates
The energetic debates in Washington are addressing the spending issues that need to be resolved by January 2013, including the across-the-board spending cuts (called “sequestration”) scheduled to take place before the first of the year. Unless legislation to replace sequestration is passed by the Congress and signed by the President before January, many government programs will face at least a 7.8 percent cut, including $2.5 billion in critical research funding at the National Institutes of Health. It is time for us to refocus our fight for basic research funding towards better treatments and eventually a cure for hydrocephalus.
A Gift of Advocacy: Support Your Voice in Washington
The Hydrocephalus Association’s advocacy strategy spans a broad range of activities from local, grassroots awareness efforts such as our WALK program, to state level efforts to establish hydrocephalus awareness days/months, to our federal efforts which focus on research programs at the National Institutes of Health (NIH) and legislation with Congress. Our primary advocacy goal is […]
A Gift of Legacy: Join the Fudge Solomon Legacy Society
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 […]
What Do We Want? A CURE! When Do We Want It? NOW!
September is not the only month to raise awareness about hydrocephalus. Join us in celebrating the launch of our Advocacy Toolkit, a resource to communicate with elected officials and the media.
Tennessee Mom Calls for Research Funding of Hydrocephalus
Chara McLaughen raises awareness and calls for increased funding for research into hydrocephalus.
Voices from Our Community: Joyce Schwartz Spreads Her Message about Normal Pressure Hydrocephalus
Four years ago, Mia Padron of Long Island, New York, was on a mission to make a difference for the life of her son and all other individuals living with hydrocephalus. Her son, Tyler, who is now 10, was born with hydrocephalus but not diagnosed until he was 23 months old. Those 23 months were […]
NY State Senator John Flanagan Proclaims September Hydrocephalus Awareness Month
NY State Senator John Flanagan proclaims September Hydrocephalus Awareness Month. Joined by Mia Padron, Senator Flanagan presented the Hydrocephalus Association with a resolution he sponsored to help raise awareness of the hydrocephalus.
Raising Awareness…From Coast to Coast!
Strength. Perseverance. Endurance. Spirit. Do these traits sound familiar? Of course, these are all words that describe individuals touched by hydrocephalus. These words also describe Mark Paulissen and Mary Sodano. Their spirit of adventure and love for bicycling has spurred them onto a journey of a lifetime. Sponsored by Celsius drink company, Mark and Mary have challenged […]
Tracy Taback has Article about Hydrocephalus Published in The Hartford Courant
Tracy Taback raises awareness about hydrocephalus, shares her personal journey, and announces the upcoming Middlebury, Connecticut WALK scheduled for October 6th. To read the full article, click here.
2500 Mile Bike Ride will Benefit the Hydrocephalus Association
Mark Paulissen and Mary Sodano are preparing to embark on a 2500 mile bike ride journey ride for a cause near to their hearts, hydrocephalus. To read the full article, click here.
Voices from Our Community: Milton Newman Shares His Story of Normal Pressure Hydrocephalus
Fog is Lifted After 15 Years of Confusion and Misdiagnosis Milt Newman’s retirement was not living up to expectations due to a slow progression of seemingly inexplicable mental and physical decline. What no one knew was that Milt, then 73, was suffering from Normal Pressure Hydrocephalus (NPH), a treatable neurological disorder in which excess fluid […]