I hope you know how important you are to us. Your past support of the Hydrocephalus Association has provided hope, encouragement, and community to thousands of people affected by hydrocephalus.
As we close out yet another banner year, we are grateful for all that we have been able to achieve through the support of our caring community. It is truly only through donors like you that we can continue to make a difference in the lives of members like Olivia Maccoux, featured in this year’s Research Campaign, and further our mission of promoting a cure for hydrocephalus and improving the lives of those affected.
We’re proud of our accomplishments, but as you know, there is so much more to be done. That’s why I’m writing today, to ask that you continue to stand by our side and send your year-end gift by December 31, 2016. Knowing we can count on you, we promise to continue:
- Funding critical research that will lead to a medical breakthrough for our community. To date, HA has invested more than $4.5M to stimulate the research ecosystem and investigate alternative methods for treating the condition. In 2016, we launched a new three-year, $3 Million campaign to focus research on posthemorrhagic hydrocephalus, the most common form of hydrocephalus in children. We have already secured $1.6 Million and will grant the first round of awards this month.
- Providing a source of comfort and refuge for people affected by hydrocephalus … whether it’s through our toll-free hotline and email, informative publications, online resources or physician directories. In 2016 we provided direct support to families in need across the nation. We expanded our Hydrocephalus Education Days, held in conjunction with local hospitals, and hosted events in Greenville, SC; Washington, DC; New York, NY; and, Phoenix, AZ. We hope to come to your community in the near future as we replicate this program nationally.
- Sponsoring the only National Conference on Hydrocephalus, which brings together patients, doctors, scientists and advocates to share the latest in hydrocephalus treatment and care, and provide much needed peer-to-peer education and support. The conference in 2016 attracted nearly 500 on-site attendees and 700 participants through our virtual sessions. (Click here to listen to session recordings.). In a recent post evaluation of attendees, 95% of conference participants shared that the conference either met or exceeded their expectations.
- Advocating for public funding of hydrocephalus research by deepening our relationship with the National Institutes of Health (NIH). In September of this year, we met with key officers within NIH to discuss what the Hydrocephalus Association is doing to advance research in the private arena and what the National Institute of Neurological Disorders and Stroke (or NINDS, one of NIH’s Institutes) has been doing to support hydrocephalus research.
- Increasing our presence on Capitol Hill. Members attended two Advocacy Days on Capitol Hill, in conjunction with Rare Disease Day and the Rally for Medical Research. We also just hired our very first full-time Advocacy Manager to ensure work on the Hill continues to advance and more members engage in local efforts.
- Spreading the word, reaching out and building community. In 2016, we expanded our WALK program to 14,000 participants, advocated for more research funding at even more government agencies, and increased our social media presence, with thousands of followers on Facebook and Twitter through Make Waves for Hydrocephalus.
As you can see, it’s been a busy year and it is truly an exciting time to be part of the Hydrocephalus Association. In our fourth decade of service, we are a bigger, better and stronger force in the fight against hydrocephalus. I hope you feel proud of our work.
Will you please renew your contribution for 2016, as we move ahead with even more plans? In return, you can count on us to do everything in our power to eliminate the challenges of living with hydrocephalus, now and well into the future.
I look forward to hearing from you soon.
Diana Gray, MA
Chief Executive Officer