2026-06-15T08:55:59-05:00 2025-12-31 844233121 SHARPE PATEL CPA 5510 SIX FORKS ROAD SUITE 140 RALEIGH NC 27609 990 2025-01-01 264826165 NORTH CAROLINA CENTER FOR THE CARE OF HUNTINGTON'S DISEASE INC NORT 9198038128 2054 KILDAIRE FARM ROAD 427 CARY NC 27518 ANTHONY MARTINEZ TREASURER 9198038128 2026-06-12 1 REBECCA FISHER P01690017 7044993893 2026-06-12 2025 2025-03-06 01:10:19Z HD REACH ANTHONY MARTINEZ 2054 KILDAIRE FARM ROAD 427 CARY NC 27518 430134 0 X WWW.HDREACH.ORG X 2009 NC PROVIDING ACCESS TO HEALTHCARE, EDUCATION, AND SOCIAL ASSISTANCE TO PATIENTS AND FAMILIES AFFECTED BY HUNTINGTON'S DISEASE IN NC. 10 10 4 63 0 0 356766 381392 12301 12342 12775 10823 9124 3241 390966 407798 0 0 0 0 349203 357363 0 0 51150 39747 47392 388950 404755 2016 3043 400104 409988 4971 4070 395133 405918 X TO IMPROVE THE CARE OF PEOPLE WITH HUNTINGTON'S DISEASE AND THEIR FAMILIES BY CONNECTING THEM TO MEDICAL CARE AND COMMUNITY SUPPORT. TO INCREASE THE UNDERSTANDING OF HUNTINGTON'S DISEASE IN THE GENERAL COMMUNITY, HEALTHCARE PROVIDERS, HEALTHCARE FACILITIES, AND GOVERNMENT AND CHARITABLE PROGRAMS. 0 0 42534 1476 ACCESS TO CARE PROGRAM:1. PATIENT-CENTERED GOAL-DIRECTED CARE NAVIGATION (INCLUDING NEEDS ASSESSMENTS), PATIENT FAMILY EDUCATION, AND ADVOCATING SERVICES, AND OVERCOMING BARRIERS TO CARE2. REFERRALS TO APPROPRIATE SOURCE OF MEDICAL CARE OR NEEDED RESOURCES3. TELEPHONE SUPPORTLOCATION OF ACTIVITY:PRIMARY OFFICE, RALEIGH, NC; SOCIAL WORKER LOCATED IN RALEIGH, NC; CARE NAVIGATOR AVAILABLE BY PHONEPARTNERSHIPS:PARTNERSHIPS WITH HUNTINGTON'S DISEASE (HD) CLINICS AT DUKE UNIVERSITY, UNC CHAPEL HILL, AND WAKE FOREST UNIVERSITY.PURPOSE:TO FACILITATE ENTRY TO MEDICAL CARE BY PERFORMING NEEDS ASSESSMENTS, REFERRAL TO APPROPRIATE SOURCE OF HELP, FOLLOW-UP ON TREATMENT PLAN DEVELOPED DURING HD CLINICS, AND OFFER SUPPORT TO HOME-BOUND FAMILIES.NUMBER OF PERSONS SERVED IN 2025:7679 CLIENT NOTES, REPRESENTING 465 UNIQUE CLIENTS. 127601 4428 OUTREACH PROGRAM:1. IMPROVE AWARENESS IN HD FAMILIES2. IMPROVE AWARENESS WITH HEALTHCARE PROVIDERS3. RESOURCE DEVELOPMENTLOCATIONS OF ACTIVITY:RALEIGH, NC; CHARLOTTE, NC; WILMINGTON, NC; GREENVILLE, NC; WINSTON-SALEM, NC; ASHEVILLE, NC.PURPOSE:1. TO INCREASE AWARENESS IN NC HD PATIENTS AND FAMILIES OF HELP AND MEDICAL CARE AVAILABLE.2. TO INCREASE AWARENESS OF HD WITH HEALTHCARE PROVIDERS, HEALTHCARE FACILITIES, AND GOVERNMENT AND CHARITABLE PROGRAMS.3. PARTNERSHIP CREATION WITH EXISTING PROGRAMS THAT PROVIDE SERVICES NEEDED BY HD FAMILIES.OUTREACH METRICS (2025):* NUMBER OF PERSONS THAT OPENED AN EMAIL FROM US IN 2025 - 76,799 TOTAL EMAILS SENT, 49,757 OPENED, OPEN RATE 41% * NUMBER OF MID-YEAR APPEAL LETTERS SENT WITH INFORMATION ABOUT HD REACH: 1,163* NUMBER OF END-OF-YEAR LETTERS WITH INFORMATION ABOUT HD REACH: 1,455* NUMBER OF APPEAL LETTERS SENT IN 2025: 2,618* NUMBER OF OUTREACH POSTCARDS MAILED IN 2025: 300* NUMBER OF INSTAGRAM LIKES IN 2025: 1,561* NUMBER OF FACEBOOK LIKES IN 2025: 1,675 89020 2460 EDUCATION PROGRAM - FAMILIES:1. WEBSITE DEVELOPMENT2. SUPPORT GROUP PARTICIPATION3. ANNUAL FAMILY EDUCATION DAY4. SPECIAL TOPICS WORKSHOPSLOCATIONS OF ACTIVITY:RALEIGH, NC; CHARLOTTE, NC; WINSTON-SALEM, NC; GREENVILLE, NC; WILMINGTON, NC; AND ASHEVILLE, NC.PURPOSE:TO EDUCATE FAMILIES ABOUT NEW INITIATIVES IN HD RESEARCH, EDUCATE FAMILIES ABOUT HD REACH PROGRAMS, AND DETAIL RESOURCES AVAILABLE TO PATIENTS AND FAMILIES, AND CREATE OPPORTUNITIES FOR FAMILIES TO MEET AND LEARN FROM OTHER HD FAMILIES. NUMBER OF FAMILY ADVISORY BOARD ATTENDEES: 8 (6 MEETINGS)NUMBER OF BOOK CLUB ATTENDEES: 187 (12 MEETINGS)NUMBER OF GAME OVER CLUB ATTENDEES: 372 (194 MEETINGS)NUMBER OF SUPPORT GROUP ATTENDEES: 333NUMBER OF SUPPORT GROUP MEETINGS - TRIANGLE: 11 (69 ATTENDEES)NUMBER OF SUPPORT GROUP MEETINGS - CHARLOTTE: 11 (375 ATTENDEES)NUMBER OF SUPPORT GROUP MEETINGS - WILMINGTON: 11 (58 ATTENDEES)NUMBER OF SUPPORT GROUP MEETINGS - WINSTON-SALEM: 20 (131 ATTENDEES)NUMBER OF SUPPORT GROUP MEETINGS - ASHEVILLE: 0 (0 ATTENDEES)EDUCATION DAY - 118 IN-PERSON ATTENDEES. 42530 1476 EDUCATION PROGRAM - HEALTH CARE PROFESSIONALS:PURPOSE - TO IMPROVE KNOWLEDGE AND MEDICAL CARE OF HD: ITS DIAGNOSIS, TREATMENT, ON-GOING AND FUTURE RESEARCH FINDINGS, AND CREATE A MEETING FORUM FOR KNOWLEDGE EXCHANGE.NUMBER OF MEETINGS/FORUMS IN 2025: 2CLINIC VISITS: 26SKILLED NURSING FACILITY TRAINING: 3CLINIC TRAININGS: 2FIRST RESPONSE TRAININGS: 4RESOURCE TRAININGS: 2HEALTH FAIRS: 2 42530 1476 301685 1 1 0 0 0 0 0 0 0 1 1 0 0 1 0 0 0 0 0 0 0 0 0 0 1 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 1 5 0 4 1 0 0 0 0 0 0 0 0 0 0 0 0 X 10 10 0 0 0 0 0 0 0 1 1 0 0 1 1 1 1 1 1 1 0 0 X X THE ORGANIZATION 9198038128 2054 KILDAIRE FARM ROAD 427 CARY NC 27518 X ANTHONY MARTINEZ CHAIR 2.00 X X 0 0 0 DAVE KERN GOVERNANCE 2.00 X 0 0 0 BURTON SCOTT DIRECTOR 1.00 X 0 0 0 MARLENE CIVIS TREASURER 2.00 X X 0 0 0 MCKENZIE LUXMORE DIRECTOR 1.00 X 0 0 0 SHIRLEY HUGHES DIRECTOR 1.00 X 0 0 0 ALEASE DANIEL BARNES VICE CHAIR/GOVERNANCE 1.00 X X 0 0 0 GRANT DEHAVEN DIRECTOR 1.00 X 0 0 0 LAUREN HAUGHT DIRECTOR 1.00 X 0 0 0 RICK GIURLANDO DIRECTOR 1.00 X 0 0 0 0 0 0 0 0 0 0 0 51090 330302 381392 PROGRAM GOODS AND SERVICES 900099 12342 12342 12342 10823 10823 25577 51090 22336 3241 3241 407798 12342 0 14064 299141 220807 39167 39167 34421 27667 2970 3784 23801 17375 3213 3213 288 85 203 7334 792 6396 146 3875 3708 167 5936 2421 3515 4393 4393 739 89 650 326 326 5650 5650 STATE EDUCATION DAY 13520 13520 SUPPORT GROUP 2346 2346 GENETIC TESTING 2100 2100 BOOK CLUB 355 355 530 225 305 404755 301685 51920 51150 210395 190477 2110 914 1522 1196 113187 128315 75000 90000 400104 409988 1968 1053 3003 3017 4971 4070 X 242985 315918 152148 90000 395133 405918 400104 409988 3043 7742 0 X 0 0 0 X 229539 393515 451336 356766 381392 1812548 229539 393515 451336 356766 381392 1812548 824508 988040 1712 628 3896 12775 10823 29834 23114 25577 48691 1891073 66127 0.52250 0.50530 X RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED 75000 10000 5000 90000 60000 15000 75000 60000 60000 1.00000 0 0 2110 914 1196 1196 ENDOWMENT 90000 90000 PART V, LINE 4: ENDOWMENT FUNDS ARE INTENDED TO SUSTAIN THE FINANCING OF PROGRAMS AND OPERATIONS. THE FUNDS ARE MEANT TO BE MANAGED WITH THE PURPOSE OF SERVING AS A PERMANENT ENDOWMENT, BUT ALSO TO BE USED, WHEN NECESSARY, TO SUPPORT HD REACH'S FINANCIAL HEALTH AND ABILITY TO PROMOTE ITS MISSION. GOLF OUTING - RALEIGH 71814 49578 22236 19356 PADDLE BATTLE - NEW BERN 4853 1512 3341 2980 76667 51090 25577 22336 22336 3241 FORM 990, PART VI, SECTION B, LINE 11B A COPY OF THE FORM 990 IS PROVIDED TO THE BOARD PRIOR TO FILING, AND THE EXECUTIVE DIRECTOR AND BOARD TREASURER CONDUCT A DETAILED REVIEW. ANY QUESTIONS OR FEEDBACK ARE ADDRESSED BEFORE FILING. FORM 990, PART VI, SECTION B, LINE 12C ANNUAL REVIEW FORM 990, PART VI, SECTION B, LINE 15A BOARD APPROVAL WAS GRANTED BASED ON THE RECOMMENDATION OF THE COMPENSATION COMMITTEE. FORM 990, PART VI, SECTION C, LINE 19 NO DOCUMENTS ARE CURRENTLY AVAILABLE TO THE PUBLIC.