Program areas at HA
Researchthe Hydrocephalus Association (ha) remains dedicated to supporting high quality, high-impact research through continued support of the ha patient powered interactive engagement registry (happier), ha network for discovery science (hands), Hydrocephalus clinical research network (hcrn), and adult hcrn (ahcrn). Happier provides patients and caregivers the opportunity to engage in research while providing researchers access to critical data. Hands provides the connections, technology, and tools needed to spur and support innovative basic and translational research, while the pediatric focused hcrn and adult focused ahcrn provide the structure and expertise necessary to efficiently and thoroughly test these new technologies and clinical therapies with the highest clinical standards. By linking basic, translational, and clinical researchers, ha has created a pipeline to move research from the bench to the bedside.
Advocacy the Hydrocephalus Association advocacy committee has continued to monitor and support key legislation that will benefit the Hydrocephalus community. Hydrocephalus was once again included on the list of eligible conditions to receive funding under the congressionally directed medical research programs (cdmrp) administered by the department of defense (dod). The cdmrp has appropriations of $15.24 billion, which are used to fund the best scientific and medical research. We are proud of this continued accomplishment. Ha hired an advocacy engagement manager to lead the daily operations and strategy of the Association, including deepening our relationships on capitol hill and building a grassroots advocacy network. Ha continues to co-lead with the spina bifida Association a coalition focused on issues around children with chronic medical conditions transitioning to adult medical care and services. Ha also continues to be active in advocacy meetings and sign-on letters put together as part of the national health council (nhc), american brain coalition (abc), national organization for rare disease (nord), research!america, and the national heath defense consortium (dhrc).
Support and education the Hydrocephalus Association is deeply committed to improving the lives of those affected by Hydrocephalus by providing direct support as well as educational resources in collaboration with a wide range of stakeholders to raise awareness and knowledge. In 2023, ha staff provided one-on-one support through phone calls, emails, and interactions on social media totaling over 5,500 touches. Ha conducted a total of 236 virtual social gatherings and/or educational meetings with medical and other professionals joining as guest speakers in our local support groups - community networks. These events provided our community with the opportunity to find friendship and receive education. Our peer support volunteers made 94 connections to provide first-hand knowledge and experience on living with Hydrocephalus. New national level groups emerged one for men with Hydrocephalus and families impacted by l1cam. The Association continues to support our young adults' academic pursuits through our scholarship program. Established in 1994, ha has awarded 239 scholarships to deserving future leaders of the Hydrocephalus community. In 2023, ha offered 12 educational scholarships to young adults living with Hydrocephalus who exhibit promising leadership skills and are involved in their communities.
Conferences