Board of Directors

Board of Directors

 

Daniel Mahar, President and Co-Founder

Dan is a father of an XP child and studied business at Hudson Valley Community College, ran his own corporation for several years before working for the US Postal Service. He left the USPS in 1999 to concentrate fulltime on bettering the quality of life for people with XP.

 

Brad Goldhammer:  Vice President/Treasurer

Brad is a current technician with IBM, has been volunteering with the XP Society at all fundraisers since 1995 and was invited to the Board in 2000.  Brad volunteers at Camp Sundown every evening it is in operation (up to six weeks out of the year) and brings his wife and daughter to also donate time and talent. His family has been active participants and fundraisers since 1995.

 

Diane Ferris, Secretary

Diane has been a volunteer with XPS since 1998 and currently keeps the minutes of meetings. She is an active capable fundraiser, focusing several years on the Annual Sundown Festival, Camp Sundown and the XP Gala Auction. Her position at a local business as the administrative assistant makes her an incredible asset to our team.

 

Neil Johnson, Family Liason

Neil has been familiar with the XP Society for many years through his daughter’s visits to Camp Sundown. Very aware of the needs of the XP patient and family, Neil brings to the board a very open and positive approach to problem- solving. He and his wife Debbie are also active on the fundraising front.

 

Caren Mahar, Executive Director

Caren is a co-founder of the XP Society and Camp Sundown with her husband Dan. She maintains family connections, helps in fundraising and coordinating Camp Sundown, and communications. She has a Bachelors Degree from the State University of NY at Albany, a post graduate certificate in Non-profit Management from Berkshire Community College and many years working in the non-profit, executive sector and has a child with XP. Caren is a non-voting member of the board of directors.

 

All board members donate generously of their time, talent and monetary gifts each year. They recieve no compensation for their valuable service to

The XP Society and Camp Sundown.  

 

Advisory Counsel:

Thomas Mahar, is an attorney in the Town of Poughkeepsie, NY who in the opening days of the organization served as Secretary of the Board of Directors. Now he attends functions held by the organization and offers legal counsel probono as needed.

 

ADDRESS

437 Snydertown Road

Craryville, NY 12521, USA

 

Telephone: (518) 929-2174

 

Email: xps@xps.org

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Getting a rare disease diagnosis is terrifying for patients and their parents. You are not alone. We are here to support you and help you find the light in the darkness. The XP Society is a unique to the world program for children and families who can never be in daylight. We help provide the XP family support, information and the informative foundation on which to build a healthy and happy quality of life.

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© 2015 by Xeroderma Pigmentosum Society