Cure Cmd

CURE CMD'S MISSION IS TO BRING RESEARCH TREATMENTS AND IN THE FUTURE A CURE FOR CONGENITAL MUSCULAR DYSTROPHIES. CURE CMD WILL ACHIEVE THIS MISSION BY WORKING GLOBALLY TOGETHER WITH DEDICATED PARENTS GOVERNMENT AND RESEARCH ADVOCATES. CURE CMD WILL FIND AND FUND HIGH POTENTIAL RESEARCH & CLINICAL TRIALS.

RESEARCH GRANTS - FROM ITS ORIGINS THE MOST SIGNIFICANT COMMITTMENT OF THE ORGANIZATION WAS TO FIN AND FUND HIGH POTENTIAL RESARCH AND CINICAL TRIALS. CURE CMD'S MISSION IS TO BRING RESEARCH AND TREATMENTS TO THE CONGENITAL MUSCULAR DYSTROPHIES. APPLICATIONS ARE REVIEWED IN DETAIL BY CURE CMD'S SCIENTIFIC AND MEDICAL ADVISORY BOARD AND EACH APPLICATION IS SCORED ON PRE-DETERMINED CRITERIA. IN 2021 CCMD GRANTED TWO NEW GRANTS. THE AWARDS WERE GRANTED AND ARE MADE OVER MULTIPLE YEARS WITH AWARDED ORGANIZATIONS PROVIDING CCMD WITH REGULAR UPDATES TO THE USAGE OF THOSE FUNDS. FUNDING MADE THROUGH 2021 RELATES TO BOTH GRANTS AWARDED IN THE CURRENT YEAR AS WELL AS CONTINUED PAYMENT OF PRIOR YEAR GRANT AWARDS. CCMD HAD AWARDED OVER $300,000 IN GRANTS DURING 2020 WITH SIGNIFICANT AMOUNTS BEING PAID THROUGH 2021.

REGISTRY - IN AN EFFORT TO MORE RAPIDLY PROGRESS CMD RESEARCH TO CLINCAL TRIAL READINESS AND OTHER PHASES. CURE CMD IDENTIFIED THE STRONG NEED TO ESTABLISH AN INTERNATIONAL PATIENT REGISTRY. UNLIKE MORE COMMON FORMS OF MUSCULAR DYSTROPHY CONGENITAL MUSCULAR DYSTROPHY IS EXTREMELY RARE OFTEN MISDIAGNOSED AND THERE WAS NOT A SIGNLE SOURCE OF INFORMATION ON AFFECTED INDIVIDUALS. AS A RESULT IT IS DIFFICULT FOR RESEARCHERS TO PLAN FOR CMD CLINICAL TRIALS BECAUSE THE ACCURATE NUMBERS AND CHARACTERISTICS OF THE CMD PATIIENT POPULATION WERE NOT ENTIRELY KNOWN. IN AN EFFORT TO HELP SOLLVE THIS PROBLEM CCMD LAUNCHED THE REGISTRY. THE REGISTRY ALLOWS THOSE AFFECTED INDIVIDUALS AND THEIR FAMILIES TO IDENTIFY THEMSELVES AND CREATES A CENTRAL DATABASE OF CMD PATIENTS. THE REGISTRY WILL COLLECT PATIENTS' CONTACT INFORMATION CERTAIN MEDICAL TO IDENTIFY THEMSELVES AND HEALTH SURVEY RESPONSES. THE COLLELCTION OF INFORMATION WILL LULTIMATELY PROVIDE THE MOST COMPLETE AND CENTRALIZED DATASET OF CMD INFOMRATION AS WELL AS PROVIDE A MORE EFFICIENT MEANS OF CONNECTING PATIENTS WITH THE ULTIMATE CLINICAL TRALS. IN ADDITION CCMD HAS OPENED THE REGISTRY TO PARTNER ORGANIZATIONS FROM OTHER CONGENITAL MUSCULAR DISORDERS. THOSE ORGANIZATIONS ASSIST IN FUNDING BOTH THE CMDIR AS WELL AS THE TISSUE REPOSITORY MAINTAINED AT THE MEDICAL COLLEGE OF WISCONSIN.

ADVOCACY CONFERENCES OUTREACH - AN IMPORTANT ASPECT OF CURE CMD'S MISSION IS TO SPREAD AWARENESS AND ADVOCATE FOR THE AFFECTED POPULATION AS THE EXTREME RARE INCIDNECE OFTEN PUSHES RARE DISEASES TO THE BACKGROUND FOR AWARENESS RESEARCH OPPORTUNITIES AND FUNDING. CURE CMD TYPICALLY ATTENDS MULTIPLE SCIENTIFIC CONFERENCES THROUGHOUT THE YEAR IN ORDER TO INCREASE AWARENESS AS WELL AS STAY ON THE FOREFRONT OF UPCOMING RESEARCH AND TRENDS. DR. GUSTAVO DZIEWCZAPOLSKI IS CURE CMD'S SCIENTIFIC DIRECTOR. HE HELPS COORDINATE THE RESEARCH GRANT PROGRAMS AS WELL AS BUILDS RELATIONSHIPS WITH RESEARCH INSTITUTIONS CLINICIANS AND PHARMACEUTICAL COMPANIES. HE OFTEN REPRESENTS CURE CMD AND THE CMD COMMUNITY AT VARIOUS CONFERENCES.