Organizations Filed Purposes:
TO IMPROVE THE QUALITY OF LIFE TODAY FOR PEOPLE AFFECTED BY MITOCHONDRIAL DISEASE THROUGH SUPPORT, EDUCATION, EMPOWERMENT, AND ADVOCACY INITIATIVES AND TO ENGAGE THE COMMUNITY FOR BETTER CARE AND AWARENESS ABOUT THE DISEASE.
OUTREACH AND EDUCATION PROGRAMS WHICH IMPROVE THE PATIENT OR FAMILY'S UNDERSTANDING OF MITOCHONDRIAL DISEASE AND WHCIH EDUCATE BOTH THE GENERAL AND THE MEDICAL COMMUNITY, IMPROVE THE PATIENT'S QUALITY OF LIFE AND EMPOWER THE PATIENT / PARENT TO BE AN ADVOCATE IN THEIR CASE. MITOACTION'S INITIATIVES IN THIS AREA INCLUDE AN AWARENESS WALK, FREE EDUCATIONAL DVD'S AND SCHOOL ADVOCACY RESOURCES, WEEKLY SUPPORT GROUPS, MONTHLY EDUCATIONAL LECTURE SERIES, AN ANNUAL MEDICAL EDUCATION MEETING FOR DOCTORS, AN ONLINE GUIDE FOR PRIMARY CARE PHYSICIANS OFFERING EXPLANATIONS AND RECOMMENDATIONS FOR MANAGING MITOCHONDRIAL DISEASE.
PATIENT & FAMILY SUPPPORT - MITOACTION STRIVES TO OFFER SUPPORT & PRACTICAL RESOURCES AT NO COST TO EVERY INDIVIDUAL OR CAREGIVER AFFETED BY MITOCHONDRIAL DISEASE. THESE INITIATIVES HELP PATIENTS AND FAMILIES DEAL WITH DIAGNOSIS OF MITOCHONDRIAL DISEASE TODAY AND OFFER ASSISTANCE IN NAVIGATING THE MEDICAL SYSTEM, SCHOOL, COMMUNITY OR WORKPLACE. MITOACTION'S RESOURCES INCLUDE "MITO 411" A TOLL-FREE PEER SUPPORT HOTLINE; MONTHLY INTERNATIONAL TELECONFERENCES, FAMILY SOCIALS AND SUPPORT GROUPS; ACCESS TO EXPERT INFORMATION VIA WEB AND TELECONFERENCING, PODCASTS AND VIDEOS, DEDICATED ONLINE SUPPORT TOOLS AND FORUMS FOR PARENTS, TEENS AND ADULTS IN ORDER TO REDUCE ISOLATION AND FEAR OF LIVING WITH THE DISEASE.
MITOACTION HAS CREATED SPECIAL PARTNERSHIPS WITH THREE US CAMPS AS PART OF OUR MISSION TO MAKE SUMMER CAMP A POSSIBILITY FOR EVERY CHILD WHO SUFFERS FROM MITOCHONDRIAL DISEASE. EACH OF THESE CAMPS IS PART OF THE NATIONALLY ACCREDITED SERIOUSFUN CAMP NETWORK, AND OFFERS A SAFE, MEDICALLY SUPERVISED PROGRAM THAT ALLOWS MITO KIDS TO BE FREE AND SAFE, MEET NEW FRIEDNS, HAVE FUN, FORGET ABOUT THEIR TUBES AND MEDS, AND "JUST BE KIDS". THROUGH OUR PARTNERSHIPS, THESE CAMPS ARE WELL-EQUIPPED TO SHAPE A PROGRAM FOR OUR MITO KIDS BY UNDERSTANDING THE UNIQUE CHALLENGES OF MITOCHONRIAL DISEASE. THE MATTHEW HARTY CAMP FUND HELPS ENSURE THESE KIDS AND FAMILIES CAN HAVE THIS INCREDIBLE CAMP EXPERIENCE COMPLETELY FREE OF CHARGE.
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 |
|---|
| Kira Mann | CEO | 40 | $90,000 |
| Gordon Russell | VICE PRESIDE | 5 | $0 |
| Dr Andrew Nierenberg | DIRECTOR | 5 | $0 |
| Tom Keery | SECRETARY | 5 | $0 |
| Paul Harty | PRESIDENT | 5 | $0 |
| Marie A Grant | TREASURER | 5 | $0 |
| Jessie Fein | DIRECTOR | 5 | $0 |
| Saad Dinno | DIRECTOR | 5 | $0 |
| Philip Borden | FORMER PRESI | 5 | $0 |
Data for this page was sourced from XML published by IRS (
public 990 form dataset) from:
https://s3.amazonaws.com/irs-form-990/202003109349302415_public.xml