Organizations Filed Purposes:
THE MARFAN FOUNDATION CREATES A BRIGHTER FUTURE FOR EVERYONE AFFECTED BY MARFAN SYNDROME, LOEYS DIETZ, VASCULAR EHLERS-DANLOS AND OTHER GENETIC AORTIC CONDITIONS. - WE PURSUE THE MOST INNOVATIVE RESEARCH AND MAKE SURE THAT IT RECEIVES PROPER FUNDING. - WE CREATE AN INFORMED PUBLIC AND EDUCATED PATIENT COMMUNITY TO INCREASE EARLY DIAGNOSIS AND ENSURE LIFE-SAVING TREATMENT. - WE PROVIDE RELENTLESS SUPPORT TO FAMILIES, CAREGIVERS, AND HEALTHCARE PROVIDERS. - WE WILL NOT REST UNTIL WE'VE ACHIEVED VICTORY - A WORLD IN WHICH EVERYONE WITH MARFAN SYNDROME OR OTHER RELATED CONDITIONS RECEIVE A PROPER DIAGNOSIS, GET THE NECESSARY TREATMENT, AND LIVE A LONG AND FULL LIFE.
RESEARCH - THE MARFAN FOUNDATION TIRELESSLY ADVANCES THE RESEARCH FOR TREATMENTS THAT SAVE LIVES AND DRAMATICALLY ENHANCE QUALITY OF LIFE FOR PEOPLE LIVING WITH MARFAN SYNDROME, LOEYS DIETZ, VASCULAR EHLERS-DANLOS, AND OTHER RELATED CONDITIONS. THROUGH ITS RESEARCH GRANT PROGRAM, THE FOUNDATION HAS STRENGTHENED A GROWING COMMUNITY OF EXPERT RESEARCHERS COMMITTED TO VICTORY OVER MARFAN SYNDROME AND OTHER RELATED CONDITIONS. THE FOUNDATION URGES THE GOVERNMENT TO FUND THE RESEARCH THAT WILL IMPROVE AND SAVE LIVES AND FACILITATES THE SHARING OF KNOWLEDGE ABOUT THESE THROUGH CONFERENCES, SYMPOSIA, AND PARTNERSHIPS WITH GOVERNMENTAL AGENCIES AND OTHER HEALTH ORGANIZATIONS.
SUPPORT - THE MARFAN FOUNDATION PROVIDES A SUPPORTIVE COMMUNITY FOR EVERYONE AFFECTED BY MARFAN SYNDROME, LOEYS DIETZ, VASCULAR EHLERS-DANLOS, AND OTHER RELATED CONDITIONS. INDIVIDUALS, FAMILY MEMBERS, MEDICAL PROFESSIONALS, AND OTHER HEALTHCARE PROVIDERS CAN ACCESS INFORMATION ABOUT MARFAN SYNDROME AND OTHER RELATED CONDITIONS ON ITS WEBSITE, OVER THE PHONE, OR VIA EMAIL. AND, IT OFFERS SPECIAL RESOURCES FOR CHILDREN, TEENS, PARENTS, TEACHERS, NURSES, AND OTHER SPECIALIZED GROUPS. ITS ANNUAL CONFERENCE BRINGS TOGETHER THE ENTIRE COMMUNITY FOR INFORMATION AND RESOURCE SHARING WHILE REGIONAL SYMPOSIUMS GIVE AFFECTED PEOPLE EDUCATIONAL OPPORTUNITIES CLOSE TO HOME. IN ADDITION, THE FOUNDATION'S GROWING CAMPING PROGRAM GIVES AFFECTED CHILDREN AN OPPORTUNITY TO HAVE A NORMAL SUMMER EXPERIENCE. THE FOUNDATION'S VOLUNTEERS FOR VICTORY PROGRAM OFFERS OPPORTUNITIES FOR AFFECTED PEOPLE TO CONNECT WHILE HELPING TO ADVANCE THE FOUNDATION'S MISSION.
EDUCATION- THE MARFAN FOUNDATION ALWAYS HAS THE LATEST AND MOST ACCURATE INFORMATION, AND IT EDUCATES EVERYONE FROM PATIENTS AND FAMILIES TO MEDICAL PROFESSIONALS AND THE GENERAL PUBLIC ABOUT MARFAN SYNDROME, LOEYS DIETZ, VASCULAR EHLERS-DANLOS, AND OTHER RELATED CONDITIONS. THE FOUNDATION PROVIDES EXPANSIVE INFORMATION FOR PATIENTS, FAMILY MEMBERS, AND HEALTHCARE PROVIDERS THROUGH ITS WEBSITE AND HELPLINE, ACCESSIBLE VIA PHONE AND EMAIL, AS WELL AS WEBINARS ON MEDICAL TOPICS AND QUALITY OF LIFE ISSUES. IN ADDITION, THE FOUNDATION CREATES PUBLIC AWARENESS CAMPAIGNS ABOUT AORTIC DISEASE AND THE RISK OF SUDDEN DEATH FOR PEOPLE WITH MARFAN SYNDROME AND OTHER RELATED CONDITIONS AND THE IMPORTANCE OF EARLY DIAGNOSIS.
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 |
|---|
| Michael L Weamer | PRESIDENT/CEO | 35 | $382,192 |
| Helaine Baruch | CHIEF DEVELOPMENT OFFICER | 35 | $220,430 |
| Judith Gibaldi | CFO/COO | 35 | $207,927 |
| Josephine Grima | CHIEF SCIENCE OFFICER | 35 | $173,304 |
| Eileen J Masciale | CHIEF PROGRAM OFFICER | 35 | $144,411 |
| Inderjeet Kaur | DIRECTOR OF FINANCE | 35 | $111,007 |
| Susan Leshen | SR. DIRECTOR OF PATIENT AND PROGRAM | 35 | $107,470 |
| Anthony Yasick | DIRECTOR | 1 | $0 |
| Scott Avitabile | DIRECTOR | 1 | $0 |
| Jon Tullis | DIRECTOR | 1 | $0 |
| Gary Kauffman | DIRECTOR | 1 | $0 |
| Emily P Wheeler | DIRECTOR | 1 | $0 |
| Beth Utz | DIRECTOR | 1 | $0 |
| David Warren | DIRECTOR | 1 | $0 |
| Sinclair Li | DIRECTOR | 1 | $0 |
| Jeffrey C Lesage | DIRECTOR | 1 | $0 |
| Alix Mclean Jennings | DIRECTOR | 1 | $0 |
| Heather Bergstom | DIRECTOR | 1 | $0 |
| Patricia Mccabe Estrada | DIRECTOR | 1 | $0 |
| Alan Braverman Md | DIRECTOR | 1 | $0 |
| Jerry Lerman | DIRECTOR | 1 | $0 |
| Bert Medina | SECRETARY | 1 | $0 |
| Caryn Kauffman Cpa | TREASURER | 3 | $0 |
| Karen Murray | IMMEDIATE PAST CHAIR | 1 | $0 |
| Cory Eaves | CHAIR | 8 | $0 |
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