Advocating increased Awareness and Support for persons affected by Relapsing Polychondritis.
The Relapsing Polychondritis Awareness and Support Foundation, Inc. is a non-profit organization dedicated to supporting and advocating research, providing emotional support for patients and their families, educating the general public and medical communities, and increasing awareness and support of Relapsing Polychondritis.
Relapsing Polychondritis Awareness and Support Foundation’s vision and guiding principles on which our advocacy initiatives are based:
- A global awareness and support of the challenges faced by people living with Relapsing Polychondritis and the associated awareness, support and costs to society and the medical community as a whole.
- A world where people with Relapsing Polychondritis can secure access to shared information and support through patient experiences. Providing assistance to the patient community to secure specialty physician services and diagnostic services relevant to their wishes and geographical location in order to extend and improve their lives.
- A social and financial culture of innovation that supports both the basic patient communities’ interactive support and information regarding physician access, and physicians in translational research facilities for diagnostics and therapies for all patients with Relapsing Polychondritis.
A web-based environment that encourages and supports physician awareness and access to timely resources of safe and effective diagnostics and treatments for patients with Relapsing Polychondritis.
Get to Know Us
This Foundation is unlike any other Foundation for Relapsing Polychondritis, past or present. This entity had been just a dream for many suffering from this relentless disease. As an incurable and progressive condition, there is a constant need for a unified, proactive voice for current and future patients, as well as their supporters.
After many months of discussion and planning, The Relapsing Polychondritis Awareness and Support Foundation, Inc. was officially launched in April 2013. Despite having no “seed money” and being led by just four RP patients, the Foundation has received a tremendous show of support. We have a very long road to travel, but we also have the determination and dedication to make this grow and prosper. We intend to be the “long arm” and the “voice” for the ever-growing RP community.
We’d like you to get to know the leaders of the Foundation who, though sometimes too ill and in need of a break, are working very hard together to recruit supporters, spread awareness, raise funds, and much more. All of this has been and will be done in the spirit of prosperity, growth, and longevity for our mission.
RPASF,Inc. Current Board of Directors
Carol is a married mother of three grown sons and is the proud “Nana” of seven 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. Thanks to Tom, Dale, and all of you, this dream is coming true.
Susan Ross, known as “Dale” to most, lives in Northeast Georgia near Athens, a college town of the University of Georgia located one hour North of Atlanta. Dale has been married for close to 30 years, and she and her husband have one daughter.
Dale is no stranger to Relapsing Polychondritis, having begun her journey in the late 1980s through the 1990s, and she had an aortic heart valve replacement in November 1998.
Dale trained and showed horses and cattle dogs throughout the U.S., and also participated in bookkeeping, riding horses, supervising and announcing equestrian events, fundraising for charities, nursing, caregiving, boat captaining, and freelance writing, in addition to her duties as a wife and mother. Her family operates a full- time business, Silver Creek Farms, raising cattle, producing hay, and selling cattle feed. There is always work waiting to be done.
Dale has long dreamed of helping others battle RP and hopes to help them go through a better process and obtain a more timely diagnosis. A quote from the Relapsing Polychondritis Awareness and Support Foundation site that she finds to apply in daily life is, “life is a beautiful struggle.” Carol Giordano was the first fellow RPer Dale met personally during a trip through Indianapolis in 2005, and she later met Tom Christie when traveling to Minneapolis in September 2013.
Director – Director Strategic Alliances / COO
Kenny currently hails from the Deep South and resides in Mississippi. He is the first among us for now who does not have RP. His background is in Engineering, System Design and Development for commercial and industrial building systems. Kenny has since retired and asked to join our organization on his own behalf, as personal friend of Tom Christie, our Chair/CEO.
In his capacity of Director – Strategic Alliances, Kenny will be responsible for the management of the Foundation’s communications strategy and objectives, developing communications plans, and implementing a broad range of public relations activities including press, media, and sponsor organizations.
He will also work with the CEO to achieve organizational goals and objectives by administering the communications and public relations initiatives as determined by the larger organizational strategic planning process.