Advocacy

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.

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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.

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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!

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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).

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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!

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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. 

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Hydrocephalus Action Network

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.

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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.

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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.

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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.

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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.

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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.

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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.

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Hydrocephalus Action Network

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.

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Orin Hatch Rare Disease Caucus

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.

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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.

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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

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Teen with money

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.

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Hydrocephalus Association Webinar Speak Up!

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.

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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.

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Hydrocephalus Teens on Capitol Hill

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!

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Board meeting of the Hydrocephalus Association

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.

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Teens with Hydrocephalus

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.

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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.

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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 […]

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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 […]

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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.

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Tennessee Mom Calls for Research Funding of Hydrocephalus

Chara McLaughen raises awareness and calls for increased funding for research into hydrocephalus.

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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 […]

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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.

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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 […]

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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.

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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.

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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 […]

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Back To School Time!

It’s that time of the year – back to school time! Most kids around the country will have returned to school this past Tuesday, September 4th, if they have not already. This can be an exciting yet stressful time for parents and kids alike. While kids may be worried about facing the academic rigors of […]

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Delaware’s Hydrocephalus WALK Highlighted in the Smyrna-Clayton Sun-Times

The Smyrna-Clayton Sun-Times highlights the upcoming Delaware Hydrocephalus WALK which will take place on September 22, 2012 at Smyrna High School. To read the full article, click here.

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September is Hydrocephalus Awareness Month! Here’s What You Can Do…

by Jennifer Bechard, Support Group Liaison This September, the Hydrocephalus Association (HA) invites you to celebrate and honor the estimated one million Americans touched by hydrocephalus. As a community, we can do this by raising awareness about hydrocephalus either in our own circles or to the larger networks of which we are a part. This […]

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CT News Channel WTNH Spotlights the Upcoming Middlebury WALK

Connecticut News Channel WTNH spotlights the upcoming Middlebury WALK that will take place on October 6, 2012 at Meadowview Park. To read the full article, click here.

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Chicago’s Upcoming WALK Appears in the Chicago Sun Times Online

Local reporter,  Matthew Schwerha, highlights the upcoming Chicago WALK occurring September 15, 2012. To read the full article, click here.

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Motorcycle Club Raises Funds for Young Boy with Hydrocephalus

The Steel Talon motorcycle club raised funds for a NY boy and his family. To read the full article, click here.

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