The Relapsing Polychondritis Awareness and Support Foundation’s purpose is to:
- Increase awareness about relapsing polychondritis.
- Provide support (primarily through the use of the internet, social media, and patient advocacy programs) for those who are affected by relapsing polychondritis.
- Support research to advance a cure for relapsing polychondritis.
- Promote quality care for relapsing polychondritis patients.
- Engage in such other activities in connection therewith that the Board of Directors may authorize, in all cases subject to the provisions of Section 501(c)(3) of the Internal Revenue Code of 1986, as amended, or the corresponding provisions of any subsequent federal tax law.
Relapsing Polychondritis Awareness and Support Foundation Inc. Board of Directors and Officers
Director / Chair
Nancy Linn is a research advocate and philanthropist. In 2011, she was diagnosed with relapsing polychondritis. Nancy produced “RP The Ride of My Life,” documentary about her battle with relapsing polychondritis, to advance research about this and other autoimmune diseases in pursuit of treatments and cures.
Director / Vice Chair
Michael Linn has over 25 years of operational, transaction and start-up experience in the investment management business. Michael is a member of the board of directors of the American Autoimmune Related Diseases Association, Inc. (AARDA).
Director / President
Dave has 30 years of experience in public and private sector development, including fund development, philanthropic donor research, marketing and recruitment, and grant writing. He has a proven record of engaging donors to advance research and designing educational and advocacy experiences to connect researchers with various communities.
Director / Secretary
Mr. DeRosa is a Mobility Lead at AECOM with over ten years of experience in both public and private sectors, as well as non-profit. He is based in Los Angeles and his recent experience has focused on delivery of transportation projects including Connected and Autonomous Vehicles, Hyperloop, High-Speed Rail, Light-Rail, and Streetcars.
David has been practicing law for over 30 years. He serves as outside General Counsel to companies and nonprofit organizations. David was diagnosed with relapsing polychondritis in 2011.
Carol is a married mother of three grown sons and is the proud “Nana” of nine grandchildren. She did mostly volunteer work until becoming involved in real estate in 1994 and going on to earn her realtor’s license in 1997. She works part-time now with her husband, Mike, who obtained his RE license in 2004 and is Carol’s partner as well as caregiver and main supporter. Carol started experiencing RP symptoms in 1999 but was not diagnosed correctly until 2002. As one who always needs to know everything about what she is faced with, Carol got involved with a Yahoo Support Group for RP. She was subsequently asked, about three years later, to take over as moderator of that group. She then went on to create a Facebook group for relapsing polychondritis and is now administrating both groups. It has been Carol’s dream to have a foundation for this severe and rare illness to provide help and hope for sufferers and their loved ones for many years to come.
Susan Ross known to most simply as “Dale” resides in NE Georgia just minutes from the college town of Athens, GA. and the University of Georgia (UGA). She’s also located approximately one hour North of Atlanta, GA. and Emory University.
Dale is no stranger to relapsing polychondritis beginning that nightmare of a journey back in the late 1980’s, into the 1990’s until the present. This includes an aortic heart valve replacement in November 1998. Dale has been involved with Relapsing Polychondritis Awareness and Support Foundation Inc. (RPASF) as a Founding Member since 2013.
She is married and her family operates a full time business, Silver Creek Farms, raising cattle, horses, hay, liquid cattle feed and rental properties. The Ross Family also includes Erin Ross who is also an active (RP) Advocate. Dale can no longer participate in many activities which (RP) cut short, but continues doing all that is possible with the business, bookkeeping and has been involved in fund raising for charities. “It just felt right to try to help others affected with this mysterious illness which is often relentless. I just jump in and do anything that needs to be done. I enjoy buying and selling anything, staying busy WHEN I feel like it, so call me an entrepreneur I suppose”.
Favorite Quote: Life is a Beautiful Struggle…
Jennifer Marciano Amato