Ataxia Telangiectasia Childrens Project Inc

ORGANIZING AND SUPPORTING INNOVATIVE RESEARCH, CONFERENCES, CLINICAL TEAMS, DATA PLATFORMS AND BIOMARKERS TO OPTIMIZE DISEASE MANAGEMENT STRATEGIES, DEVELOP NEW TREATMENTS, AND FIND A CURE FOR A-T, A GENETIC DISEASE THAT CAUSES LOSS OF MUSCLE CONTROL, CANCER, LUNG DISEASE, AND IMMUNE SYSTEM PROBLEMS.

RESEARCH AND CLINICAL GRANTSTHE A-T CHILDREN'S PROJECT PROVIDES COMPETITIVE AWARDS FOR SCIENTIFIC AND CLINICAL RESEARCH GRANTS RELATED TO FINDING LIFE-IMPROVING THERAPIES AND A CURE FOR ATAXIA-TELANGIECTASIA. SCIENTIFIC EXCELLENCE AND RELEVANCE TO A-T ARE THE PARAMOUNT CRITERIA USED TO SELECT RESEARCH PROJECTS. GRANT AWARD DECISIONS ARE MADE THROUGH A CAREFUL AND DETAILED, TWO-TIERED PEER-REVIEW SELECTION PROCESS. CONSISTENT WITH THE URGENCY FELT BY ALL FAMILIES IMPACTED BY THIS DISEASE, THE A-T CHILDREN'S PROJECT'S CURRENT FOCUS IS ON FUNDING INNOVATIVE RESEARCH STRATEGIES THAT LOOK AT A-T IN NEW WAYS AND THAT INCLUDE A CLEAR 'YES OR 'NO' ANSWER TO THE HYPOTHESIS RATHER THAN MERELY DEFINING A MECHANISM. HIGHEST PRIORITY IS GIVEN TO PROJECTS THAT, WHILE DRAWING ON BASIC DISCOVERIES, INCLUDE CREATIVE STRATEGIES FOR SUGGESTING AND EVALUATING SPECIFIC DISEASE-MODIFYING AND SYMPTOMATIC INTERVENTIONS.

CONFERENCES AND RESEARCH SUPPORTWE HOLD SCIENTIFIC MEETINGS AND WORKSHOPS REGULARLY AROUND THE COUNTRY 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 THE AGENDAS ALWAYS INCLUDE PRESENTATIONS OF UNPUBLISHED DATA AND OPEN DISCUSSIONS AND DEBATE. WE ALSO SPONSOR SCIENTIFIC CONFERENCES WHERE THE MISSION FALLS WITHIN THIS REALM. WE HAVE 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. WE DO NOT CHARGE MEMBERSHIP FEES OR OTHER FEES FOR OUR 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 OUR 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 OUR RESEARCH PROJECTS.

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, WE HELP 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 US 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. WE TYPICALLY CORRESPOND AND SPEAK 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. WE ALSO PUBLISH AND DISTRIBUTE OUR CARING FOR PEOPLE WITH A-T HANDBOOK FREE OF CHARGE. THIS HANDBOOK GIVES SPECIFIC MEDICAL INFORMATION ABOUT A-T FOR FAMILIES AND CAREGIVERS.