President & Chief Executive Officer's Message
"As we look ahead, I am confident that we can change the future of hydrocephalus but it will take support from everyone who cares about this condition. Thank you for inspiring us and thank you for believing in us. With your help, I know we can continue to grow boldly!"
— Diana Gray, President & Chief Executive Officer
2017 was an impactful year with 8 new grants awarded to scientists and $1.8 million invested in bold and innovative research.
Since 2009, we have committed over $7 million in promising research to prevent, cure, and treat hydrocephalus and to improve the lives of those living with hydrocephalus.
Increased Hydrocephalus Research
Because of our initial grant funding, scientists Dr. Shenandoah Robinson and Dr. Lauren Jantzie were recommended for a DoD grant to study how a brain injury can cause hydrocephalus.
Expanded Our Research Networks
The Adult Hydrocephalus Clinical Research Networks added three sites, including our first European site.
HANDS Membership Doubled
The Hydrocephalus Association Network for Discovery Science (HANDS), a platform for both communication and collaboration among basic and translational researchers, added 75 new members bringing total membership to 150.
Published White Paper on Hydrocephalus Clinical Research
Following the Translation to Transform workshop, which brought together patients and clinical researchers, we published a white paper in 2017 outlining concerns and recommendations for conducting hydrocephalus clinical research.
Launched Roadmap to a Cure to Invest $20M by 2020
The Roadmap to a Cure campaign aims to raise $20 million by 2020 to accelerate hydrocephalus research, expand patient support services and raise public awareness about hydrocephalus.
2017 Vision Dinner Helped Accelerate Our Research
Thanks to our 2017 Vision Dinner, we are now much closer to our goal of raising $3M for research focused on Post Hemorrhagic Hydrocephalus (PHH), which develops as the result of a brain bleed.
Since the Hydrocephalus Association’s inception, our knowledgeable staff, with guidance from our Medical Advisory Board, has provided support and education for families and medical professionals impacted by hydrocephalus.
Our staff provides one-on-one support through our email and a toll-free hotline, educational materials, webinars, and conferences to help families and medical professionals expand their knowledge on hydrocephalus, and we connect local patients and families through our Community Networks.
Held Our First Transition Summit
For young people living with hydrocephalus, transitioning from a pediatric neurosurgeon to an adult-focused medical team can be an uphill battle. Our first-ever Transition Summit brought together adult and pediatric clinical professionals, patients, and families to discuss solutions to improve transitional care.
Community Networks are Growing
Nearly 20% Increase
Today, we have 43 online and in-person community networks — serving 38 communities across the country. Individuals can connect with others facing similar challenges.
Hydrocephalus Education Days
6 Education Days in 2017
In 2017, nearly 500 people participated in free Education Days, which were held in Washington, D.C.; St. Petersburg, FL; Phoenix, AZ; New York, NY; Miami, FL; and Houston, TX.
31 Scholarships Offered!
In 2017 we awarded 31 scholarships to young adults living with hydrocephalus through the Hydrocephalus Association Scholarship Program. This was the highest number of scholarships we've ever offered in a given year and it was made possible thanks to a $20,000 grant from the Abbene family! Each recipient received a $1,000 award to help further their education.
6 Educational Webinars in 2017
Our free webinars covered a wide range of topics, from Normal Pressure Hydrocephalus, which affects older Americans, to how genetics can impact the development of hydrocephalus in children. In 2017 over 4,100 people watched our webinars.
“In the days after Declan’s diagnosis, the Hydrocephalus Association was invaluable and helped us understand what was happening with our son. That’s why I decided to volunteer for HA. I want to be there for the newly diagnosed, who are just starting this journey, and be supportive when hydrocephalus turns your life upside down, just like others were there for us.”
— Kayleigh Brodeur, co-leader of the Hydrocephalus Association’s Virginia Community Network
To bring attention to the lack of treatment options for the one million Americans living with hydrocephalus, we launched our #NOMOREBS – No More Brain Surgeries – multimedia campaign.
The campaign shared personal experiences and milestones missed due to the shocking number of brain surgeries patients must undergo during their lifetime due to hydrocephalus or its many complications.
#NOMOREBS Aims to Reduce the Number of Brain Surgeries for People Living with Hydrocephalus.
“Our plans as an association are bold. The struggles our patient population face are real. We cannot continue to be invisible. We must help others understand the urgency of our mission so that they can join us in changing the future of hydrocephalus.”
— Amanda Garzon, National Director of Program Services and Communications for the Hydrocephalus Association
At the Hydrocephalus Association, we could not fulfill our mission without a dedicated team of volunteers. Our volunteers are some of the most passionate people out there. Our largest volunteer-led event is our WALK to End Hydrocephalus.
Make Waves for Hydrocephalus: Unique Fundraising Events
11 Unique Fundraising Events
Through our Make Waves for Hydrocephalus Do-It-Yourself fundraising tool, individuals interested in raising money to support our mission organized local fundraising events ranging from basketball tournaments and poker runs to concerts and 5K runs.
Raised to Support Hydrocephalus Research & Programs
Helped Support Our Mission
Grandparents Raise Funds for Hydrocephalus Research
Florida grandparents, Iris and Nat Adler, hosted a luncheon and card party at their Country Club in Boca Raton, FL to educate over 200 members about hydrocephalus and raise funds to support hydrocephalus research.
“Our goal is to make possible the necessary research so that children will never need shunt revisions or, even better, discover a way to eliminate shunts completely without consequence, and cure this condition...”
— Iris Adler
Federal legislation can impact hydrocephalus in various ways – from funding for hydrocephalus research to workplace protections.
That’s why we monitor legislation in Congress and partner with our community advocates to make our voices heard. Last year, we mobilized advocates on key pieces of legislation – and these efforts paid off.
Advocacy Position Statement Published
Our statement detailed where we stand as an association on four key policy issues – health care, education, labor, and science and research.
Engaged Members of Congress through Our Hydrocephalus Action Network
Ensuring Funding Through DoD
We helped ensure hydrocephalus remained an eligible condition for Department of Defense Research Funding.
Rare Disease Week
During the 2017 Rare Disease Week, held Feb. 27 through March 2, we joined hundreds of patients, caretakers, and rare disease organizations on Capitol Hill to advocate on behalf of the rare disease community.
CAPITOL HILL MEETINGS
Held as Part of Rare Disease Week and the Rally for Medical Research
Rally for Medical Research
On Sept. 13, 2017, we joined hundreds of health organizations on Capitol Hill for the Rally for Medical Research, which helps raise awareness about the importance of continued investment in medical research and about the challenges of living with hydrocephalus.
Fighting for Key Health Provisions
We worked to ensure key health provisions were included in the Continuing Resolution. The 2-year budget deal passed by Congress has a number of health provisions for which we had active engagement with our legislators via members of our community.
Dr. Bonnie Blazer-Yost
Indiana University-Purdue University Indianapolis
From her lab at Indiana University-Purdue University Indianapolis, Dr. Bonnie Blazer-Yost is testing drug candidates that could improve brain function in hydrocephalus patients. For a condition that can only be treated through brain surgery, the work Dr. Blazer-Yost is doing could be a game changer!
With funding through the 2015 Hydrocephalus Association Innovator Award, Dr. Blazer-Yost has shown that a specific class of drugs can decrease cerebrospinal fluid production (CSF) and reduce the severity of hydrocephalus in an animal model. To continue the work, in 2017 she successfully competed for a $1.2 million grant from the Department of Defense, something which she says she could not have done without the Hydrocephalus Association.
“The grant award we received from the Hydrocephalus Association was absolutely crucial. It allowed us to collect the rest of the preliminary data that we needed to apply for the DoD grant,” Dr. Blazer-Yost explained.
Dr. Blazer-Yost said becoming involved with the Hydrocephalus Association and its community of patients, families and scientists has enhanced her work on many levels.
“Having that interaction and being part of that community has allowed me to talk to various individuals. I’ve been able to talk to patients and their parents and to see what effects hydrocephalus has, and to fully understand what multiple surgeries mean in real life and what these patients go through. That has been enormously helpful and has kept us on track,” she said.
While initially focused on early interventions in infants, the research carried out at Dr. Blazer-Yost’s lab could have applications in the treatment of hydrocephalus at all ages.
Seattle WALK to End Hydrocephalus
Finding out your child has a major chronic condition can be daunting, especially when you think no one else can relate or understand what you’re going through. That’s what it was like for Betsy Conyard during the first few years of her daughter’s hydrocephalus diagnosis. But that all changed when she learned about the Hydrocephalus Association nearly 20 years ago.
“It’s been really great to have other people who understand the journey that we’re on. It was a really difficult thing to feel like you’re alone. It’s easy to get freaked out as a parent when your child who has a shunt implanted starts vomiting. You automatically think your child is having shunt failure when it could very well just be the flu. But when you get connected to the hydrocephalus community through HA, you can talk to other parents and experts, ask questions and discuss issues you’re facing,” Conyard explained.
Conyard is currently one of the Chairs for the Seattle WALK To End Hydrocephalus, one of 42 WALKS across the country. The WALKS are volunteer-driven and while they take some work to organize, Conyard says she finds the task incredibly rewarding. She considers the other WALK chairs and the 75 other volunteers who help make the WALK a success part of her extended family.
“Research is our only hope. So I consider it absolutely necessary that we organize these WALKS so we can help fund more research to find a cure for this condition,” she said. “It’s really a lot of fun. It’s a great way to meet some amazing people who share your concerns. The people who participate and help out with the WALK are some of my favorite people who I have really come to respect.”
Father and Husband
Rick William’s wife Trish thought she was practically cured of her Normal Pressure Hydrocephalus (NPH) after undergoing surgery for a shunt in 2013. However, the following year her symptoms returned and she eventually lost her ability to walk, talk and see. With everyone, including Trish’s doctors, baffled by what was happening, Rick turned to the Hydrocephalus Association for help.
Rick, a father of four and a real estate agent in Elmhurst, IL, began calling HA for advice. Eventually, he made a trip to Portland, OR, to attend the 2014 Hydrocephalus Association National Conference. It was at that conference when all of the pieces of the puzzle started coming together.
“By then, we had seen about 50 doctors and I always felt like I was the smartest guy in the room. No doctor could give me answers. When I arrived at the HA conference, I finally felt like I was the dumbest guy in the room,” he says. “It was the missing piece of the puzzle I had been looking for all along.”
He spoke to a number of families, shunt companies, physicians and neurosurgeons at the conference, eventually meeting Drs. Mike Williams and Mark Luciano, two of the nation’s leading experts on hydrocephalus. From that point on, things changed drastically for Trish and Rick’s family.
After seeing both Drs. Luciano and Williams, Trish was officially diagnosed with what is known as Low-Pressure Hydrocephalus and she underwent surgery to receive a new shunt in accordance with her new diagnosis. After help from physical therapists, occupational therapists, and speech pathologists, and a stint at a rehabilitation clinic, Rick finally had his Trish back again.
“Trish went from being bedridden and basically a vegetable, to being able to get around in a wheelchair entirely on her own. After 4 months of outpatient rehabilitation at the Rehabilitation Institute of Chicago and at-home care, we watched Trish go from wheelchair to a walker, to walking around independently,” Rick said. “Now she’s back at work and doing the things she loves again.”
Trish and Rick’s experience inspired them to raise funds for the Hydrocephalus Association’s research, education and support programs. For two years in a row, he’s organized a basketball tournament fundraiser known as 3ON3 Elmhurst, raising nearly $20,000 for hydrocephalus – and they have no plans of stopping.
“I can’t begin to tell you how beneficial HA and the conference was for my family. HA has been extremely supportive and we just want to give back the best way we can.”
— Rick Williams, Father and Husband, Elmhurst, IL
In 2017, we continued to invest in high-impact research, while providing much-needed support and education to patients and their families, and medical professionals. When you invest in us, you're helping the 1 million Americans living with hydrocephalus thrive, not just survive.
Total Program Services 72.09%
Total Supporting Services 27.91%
Total Expenses 100%