Ataxia Telangiectasia Childrens Project Inc

Conferences and Research SupportThe A-T Children's Project holds scientific meetings and workshops regularly as a way to encourage more cooperation between A-T research teams, to reduce redundancy in their work, and to bring scientists from different fields together to generate new research strategies. The agendas always include presentations of unpublished data and open discussions and debate. The Organization also sponsors scientific conferences whose mission falls within this realm. The Organization has found that these scientific meetings, properly orchestrated generate new research strategies, help to form new collaborations between previously competing labs, and encourage sharing of limited patient tissue samples and animal models of A-T between labs. They consistently help to accelerate research progress. Additionally, staff of the A-T Children's Project coordinate the Global A-T Family Data Platform, a patient-driven effort overseen by A-T families and experts worldwide through which health information, genetic and potentially other types of data about people with A-T can be shared with researchers, enabling them to access important patient data from around the world quickly, securely and efficiently, hopefully leading to new discoveries.

Awareness and EducationThe A-T Children's Project maintains a database of people interested in receiving news and other information from the A-T Children's Project including families, extended family members, friends, caregivers, therapists, doctors, donors, volunteers, nonprofit organizations and others interested in learning about A-T and our progress. The Organization does not charge membership fees or other fees for educational and awareness materials. Additional awareness activities include: making sure event attendees know what A-T is and the importance of the work they are supporting; conducting outreach to assist with the timely and accurate diagnosis of A-T; creating materials to help explain A-T and the Organization's research progress; answering questions and providing materials to constituents and the general public about A-T; and, maintaining a website with up-to-date information about the disease and the Organization's research projects. Historically, the A-T Children's Project, together with its volunteers and families affected by A-T, has organized a wide range of fundraising events to support biomedical research and other programs. These have occasionally included elegant galas and formal dinners. This fiscal year, however, we took a different approach by harnessing the elegant dinner concept for a different purpose. We hosted a groundbreaking event designed to bring together biotech founders, pharmaceutical executives, and healthcare investors to learn about A-T and the work of the A-T Children's Project. Our goal was to spark interest in this ultra-rare disease, inspire fresh research ideas, and encourage companies and venture capitalists to consider A-T when targeting new technologies and therapies. While the event did result in some sponsorships, its greatest success was in opening eyes. It created lasting awareness among industry leaders and revealed the tremendous opportunity they have to impact the lives of A-T families. That momentum continues today, as numerous collaborations and drug discovery efforts are now taking shape between academic groups, industry partners, and the A-T Children's Project - because of the awareness we created.

Family SupportThe A-T Children's Project developed and maintains an A-T patient registry. In addition to helping families searching for the proper diagnosis, the Organization helps them by providing support, putting them in touch with other A-T families, and assisting them with scheduling evaluations at the A-T Clinical Center at Johns Hopkins. The families contact the Organization through email, phone, website and social media platforms such as Facebook. Each newly diagnosed family gets an information package including the Caring for People with A-T handbook. The Organization typically corresponds and speaks with parents often to help them understand this rare disease and what it means for their families throughout their children's lives. A-T families and extended family members also receive information updating them on current A-T biomedical and clinical research happenings. The Organization also publishes and distributes their Caring for People with A-T handbook free of charge. This handbook gives specific medical information about A-T for families and caregivers. The Organization also plans and hosts Caregiver Weekends periodically to give parents and other caregivers opportunities to formally and informally build connections; speak openly about sensitive subjects related to A-T; and, learn directly from clinicians and researchers.