A few weeks ago you received a letter from board member Susan Fiorella announcing the kick-off of our annual membership campaign: Together Towards Tomorrow. I hope you read Susan’s story and feel proud of the direction we are headed.
As the new CEO of the Hydrocephalus Association, I am very excited to champion the cause going forward. Being a mom of a son with a chronic condition, I know the uncertainty that can exist and I also know the power of a strong, supportive community that fights for better treatment for loved ones. Because you are a valued member of our community, I thought I’d remind you of what we have accomplished with your past support. And after you read this letter, I hope you will take a moment to send your 2016 membership renewal gift because our continued progress lies in the hands of caring members like you.
Every gift we receive is put to work to improve the lives of people affected by hydrocephalus. With your generous support, in addition to our ongoing activities such as maintaining the website, publishing educational materials, and providing a toll-free hotline, here are just a few of the highlights of what you are making possible:
- Expanding the research pipeline as the largest private funder of hydrocephalus research. To date, the Hydrocephalus Association has supported eighteen (18) hydrocephalus researchers, committing and leveraging nearly $4.5 million in resources since the start of the research initiative in 2009. By 2020, we seek to secure an additional $3 million to support our research goals.
- Accelerating cure-based research through collaboration. In 2015, we launched a third research network, the Hydrocephalus Association Network for Discovery Science, HANDS, which will help accelerate cure-based research through a virtual lab.
- Promoting best treatment practices. HA continues to invest in both the pediatric and adult clinical research networks. The Hydrocephalus Clinical Research Network investigators are currently conducting eleven (11) pediatric studies ranging from best clinical practices for inserting shunts into the brain to the effectiveness of ETV/CPC procedures.
- Collecting and sharing information to deepen our understanding of hydrocephalus. The Adult HCRN has started enrollment in the first-ever national adult hydrocephalus registry. This core data project collects patient demographics, hydrocephalus etiology, diagnostic information, and surgical and medical management information. To date, data from 226 individuals has been collected. This initial data will be used to understand the variability, progression, and current treatment practices for hydrocephalus in adults and inform the development of hypothesis-driven research for this population.
- Activating our community to fight for progress. HA currently has 35 Community Support Networks operating across the nation. Recognizing the importance of strong local networks, HA received a generous grant to build the capacity of their leadership. For the first time, HA conducted a three-day meeting bringing community network leaders together in Washington, DC, for an intensive training. Attendees left motivated, empowered and eager to move HA’s mission forward locally. In 2016, we are coordinating community gatherings across the nation.
- Educating and inspiring future leaders. HA provided $1,000 scholarships to 14 youth living with hydrocephalus and will do the same in 2016. Since the scholarship program launched in 1994, we have provided 125 awards. Despite the challenges and obstacles of having hydrocephalus, these young, future leaders of our community are able to further their education, help the community and inspire their peers.
- Empowering people with information and support. We deliver over 2,500 hours annually of one-on-one support through phone, mail, email, and social media to help patients and their families. We conducted numerous webinars led by experts in the community on topics ranging from understanding the Health Insurance Exchange to updates on the Adult Hydrocephalus Clinical Research Network, and advocacy training for youth. In addition, we recorded sessions from the National Conference on Hydrocephalus which was a great success. All webinars and videos can be viewed on our website at no charge.
- Creating tools for better living with hydrocephalus. HA created a new mobile application, HydroAssist™, that allows patients to record and store their hydrocephalus treatment history and access it when needed from their mobile device. The app has received very positive reviews and currently has 1,000 users.
I hope you take great pride in all that we continue to accomplish with your support. I promise, we are working diligently every day and will leverage your 2016 membership gift to continue to improve the lives of more than 1 million people living with hydrocephalus. We look forward to working together with you this year as we make even greater strides toward fulfilling our mission.
Chief Executive Officer
P.S. Knowing we can count on you for 2016, we will continue to make life better for people affected by hydrocephalus through comfort, information, advocacy … and hope for a better future. Please send your 2016 membership contribution right away. Thank you.