Organizations Filed Purposes:
Dup15q Alliance provides family support and promotes awareness, research and targeted treatments for chromosome 15q11.2-13.1 duplication syndrome. Through our work to raise awareness and promote research into chromosome 15q duplications, we seek to find targeted treatments so that affected individuals can live full and productive lives. Together with our families, Dup15q Alliance is working towards a better tomorrow for children with chromosome 15q11.2-13.1 duplication (dup15q) syndrome.
FUNDRAISING: The creation of materials and online campaigns that are accessible to the general population and can be increased incomplexity to target each of the circles allows for a more systematic implementation of plans and goals in educating on what dup15q syndrome is and what the important challenges are faced when a child or adult is diagnosed and/or is living with dup15q syndrome. Awareness events/walks/publications in local media/ providing parents with social media content to disseminate to help educate those around them to support them is key. EDUCATION AND OUTREACH: Educating our families about what is known about dup15q syndrome. Helping them to educate their local communities, families, caregivers, medical professionals and each other. Dup15q syndrome is a rare disorder such that the majority of people (including medical personnel) do not even know exists and unfortunately this unfamiliarity extends into the medical field as well. Advocacy has many levels and takes many forms in rare disorders and dup15q syndrome is no different. Supporting our community by bringing families and patients affected by dup15q syndrome together. RESEARCH: Supporting existing research and pushing forward new research into dup15q syndrome to answer the questions of those affected by dup15q syndrome, better characterize the disorder and to find new treatments and medical care recommendations. CLINIC/TREATMENTS: Improving medical care and treatment for those with dup15q syndrome in a multidisciplinary whole patient approach. In addition we encourage, engage and support partnerships with industry and research to assist in any way we can to assist in the development of novel effective treatments foR dup15q syndrome.
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 |
|---|
| Vanessa Vogel-Farley | EXECUTIVE DIRECTOR | 40 | $96,800 |
| Lauren Weissberg | BOARD MEMBER | 5 | $0 |
| Steve Kadner | BOARD MEMBER | 5 | $0 |
| Joe Elassal | BOARD MEMBER | 5 | $0 |
| Julia Jordanich | BOARD MEMBER | 5 | $0 |
| Tessa Quinlan | BOARD MEMBER | 5 | $0 |
| Mike Porath | BOARD MEMBER | 5 | $0 |
| Tony Marmo | BOARD MEMBER | 5 | $0 |
| Guy Calvert | BOARD MEMBER | 5 | $0 |
| Donna Bennett | BOARD MEMBER | 5 | $0 |
| David Gifford | BOARD CHAIR | 10 | $0 |
Data for this page was sourced from XML published by IRS (
public 990 form dataset) from:
https://s3.amazonaws.com/irs-form-990/202012909349301136_public.xml