Organizations Filed Purposes:
PROVIDING ACCESS TO HEALTHCARE, EDUCATION, AND SOCIAL ASSISTANCE TO PATIENTS AND FAMILIES AFFECTED BY HUNTINGTON'S DISEASE IN NORTH CAROLINA.
ACCESS TO CARE PROGRAM - TO FACILITATE ENTRY TO MEDICAL CARE BY PERFORMING NEEDS ASSESSMENT, REFERRAL TO APPROPRIATE SOURCE OF HELP, FOLLOW UP ON TREATMENT PLAN DEVELOPED DURING HD CLINICS, AND OFFER SUPPORT TO HOME-BOUND FAMILIES. SERVED 153 PERSONS IN 2020. INCLUDED CRISIS INTERVENTION, REFERRAL TO APPROPRIATE SOURCE OF MEDICAL CARE OR RESOURCES AND TELEPHONE SUPPORT.
OUTREACH PROGRAM - TO INCREASE AWARENESS IN NC HD PATIENTS AND FAMILIES OF HELP AND MEDICAL CARE AVAILABLE TO THEM. TO INCREASE AWARENESS OF HD IN THE GENERAL COMMUNITY, WITH HEALTH CARE PROVIDERS AND HEALTH CARE FACILITIES,THE GOVERNMENT AND OTHER CHARITABLE ORGANIZATIONS. CREATING PARTNERSHIPS WITH EXISTING PROGRAMS THAT PROVIDE SERVICES NEEDED BY HD FAMILIES. SERVED 17,338 PERSONS IN 2020.
EDUCATION - PROGRAMS- FAMILIES TO EDUCATE FAMILIES ABOUT THE NEW INITIATIVES IN HD RESEARCH, TO EDUCATE ABOUT NC-CCHD PROGRAMS, TO DETAIL RESOURCES AVAILABLE TO PATIENTS AND FAMILIES, AND TO CREATE OPPORTUNITIES FOR HD FAMILIES TO MEET AND LEARN FROM EACH OTHER. SERVED 313 PERSONS IN 2020 AND HELD 48 SUPPORT GROUP MEETINGS. ACTIVITIES INCLUDE WEBSITE DEVELOPMENT, SUPPORT GROUP PARTICIPATION AND AN ANNUAL FAMILY EDUCATION DAY.
Executives Listed on Filing
Total Salary includes financial earnings, benefits, and all related organization earnings listed on tax filing
| Name | Title | Hours Per Week | Total Salary |
|---|
| Burton Scott | DIRECTOR | 1 | $0 |
| Chris Michalak | TREASURER | 2 | $0 |
| Chad Merrell | GOVERNANCE C | 1.5 | $0 |
| Lisa Grafstein | DIRECTOR | 1 | $0 |
| Jayne Van Dusen | SECRETARY | 1 | $0 |
| Craig Chepke | DIRECTOR | 1 | $0 |
| Terry Buehner | CHAIR | 2 | $0 |
Data for this page was sourced from XML published by IRS (
public 990 form dataset) from:
https://s3.amazonaws.com/irs-form-990/202110609349300101_public.xml