HUNTERS CMT4B3 RESEARCH FOUNDATION INC

CMT4B3 AWARDS RESEARCH FELLOWSHIP AND GRANTS FOR RESEARCH ON CHARCOT-MARIE-TOOTH DISEASE TYPE 4B3. IT ALSO HOSTS ANNUAL MEETINGS OF ALL RESEARCHERS RECEIVING ITS FUNDING AND ITS SCIENTIFIC ADVISORY BOARD TO PROMOTE KNOWLEDGE EXCHANGE AND SYNERGY. IT USES THE SERVICES OF ITS SCIENTIFIC ADVISORY BOARD TO CAREFULLY OVERSEE AND REVIEW THE SELECTION OF THE RECIPIENTS OF THE RESEARCH FUNDING. THE SAB EVALUATES EACH PROPOSAL BASED ON THE EXCELLENCE OF THE INVESTIGATOR, THE WORK PLAN AND THE PROPOSALS' ABILITY TO BE TRANSLATED INTO TREATMENTS FOR PEOPLE WITH CMT4B3. APPLICATIONS ARE REVIEWED ON A ROLLING BASIS. THE LAW FIRM OF KATTEN MUCHIN ROSENMAN, LLP WRITES THE GRANT AGREEMENT CONTRACTS WITH THESE RESEARCHERS, UNIVERSITIES, OR ACADEMIC INSTITUTIONS.THE BOARD MEMBERS, IRIS SCHULTZ AND ROBIN SCHULTZ, ATTEND THE YEARLY MEETING OF THE PERIPHERAL NERVE SOCIETY AND THE CMTRF ANNUAL CONFERENCE. CMT4B3 IS LISTED AS A PATIENT RESOURCE OF THE PNS. ATTENDANCE AT THE PNS GIVES BOARD MEMBERS THE ABILITY TO MEET WITH AND EXCHANGE IDEAS WITH INTERNATIONAL RESEARCHERS OF CMT AND CMT4B3.CMT4B3 MAINTAINS A WEBSITE FOR PATIENTS, THEIR FAMILIES AND MEDICAL PRACTITIONERS TO ASSIST IN UNDERSTANDING AND TREATING CHARCOT-MARIE-TOOTH DISEASE TYPE 4B3. THE WEBSITE CONTAINS LINKS TO OUR RESEARCH PROJECTS, A NEW PATIENT PORTAL TO JOIN OUR NEUROGENETICS REGISTRY AND THE ABILITY TO JOIN OUR NATURAL HISTORY STUDIES. CMT4B3 PRODUCES EDUCATIONAL MATERIALS DISSEMINATED AT CONFERENCES AND AT PUBLIC EVENTS TO RAISE AWARENESS. CMT4B3 MAINTAINS CLIENT MANAGEMENT SOFTWARE. IT RETAINS ACCOUNTING SERVICES. CMT4B3 FOUNDATION IS COMPOSED OF VOLUNTEERS WHO WORK FROM HOME AND DO NOT TAKE ANY SALARIES.THE FOUNDATION MAINTAINS A BIOREPOSITORY OF CMT4B3 CELLULAR MODELS AND RENEWABLE BIOLOGICAL RESOURCES AT SAMPLED, LOCATED IN PISCATAWAY, NEW JERSEY. THE FOUNDATION COLLECTS AND STORES MOLECULAR BIOLOGY SAMPLES FROM CMT4B3 PATIENTS AND THEIR IMMEDIATE FAMILY MEMBERS AT NO COST TO THE PATIENTS. SAMPLES ARE PROVIDED TO LABORATORIES AND RESEARCHERS WORLDWIDE AT NO COST, UPON REQUEST. THE SCIENTIFIC ADVISORY BOARD MEMBERS ARE REQUIRED TO SIGN CONFIDENTIALITY AGREEMENTS.