The purpose of the Adenoid Cystic Carcinoma Organization International is to create a worldwide community of ACC patients and supporters who share information, support, and hope while working together to develop a cure for ACC.
As a non-profit, ACC patient support organization, our mission is to increase the number of connected ACC patients and supporters all over the world by utilizing a variety of effective communication methods, helping our members build meaningful, supportive relationships, and reaching out to those who are looking for answers and hope. We provide methods for the ACC community to connect with others and have easy-to-access, relevant information. As we continue to build this network of ACC patients and supporters, we want them to find ACCOI to be a trusted source for accurate information that is delivered with compassion, as we work together with our partners the ACCRF in developing a cure for ACC.
To be the most compassionate, effective and knowledgeable ACC patient support organization in the world.
Our Core Values
Core values are those beliefs about what is important to us, and are the attributes that determine not only the priorities for the services we provide, but more importantly, how we do them. These values are the aspirations and intentions which we apply in everything we do.
Supportive Relationships We continually strive to help each member feel connected, providing them with answers, encouragement, strength and hope. When faced with challenges, we want each member to be heard, and their needs to be met through their interactions with our organization.
Integrity In all our actions we strive to "walk our talk". We want to maintain a sense of honesty, transparency and truthfulness in all of our interactions, and always do our absolute best to maintain accuracy and validity in the information provided.
Compassion Our words and actions should always be expressed with sensitivity and understanding of the physical and emotional pain experienced by many of our members.
Effective Communications We will always strive to know and understand our members by asking for feedback and listening to what they say. We will try to communicate our messages clearly and simply, in ways that are best understood by those receiving the message, and deliver that information the way each member would like to receive it.
Effective Teams Through collaboration we can accomplish objectives better as a team than through individual effort.
To fulfill our purpose and mission, we have specific services that we continue to develop in order to accomplish our goals. These include an expanding list of ways to reach ACC survivors such as an online support group, a toll free patient support line, FaceBook and so much more.
To view and print our brochure.
The Adenoid Cystic Carcinoma Organization International was originally formed in 2000 by Prudence Jackson, an ACC survivor from San Diego California, who was very passionate about helping others who were dealing with this rare type of cancer known as ACC. She created and monitored a Yahoo Online Support Group and developed an information-rich website for the ACC community. In 2003 she took the legal steps to register the organization as a 501(c)3 non-profit corporation in order to provide a central spot for tax deductible donations to fund research. From the beginning of the organization Prudence led fund raising efforts for research, utilizing the services of NORD (National Organization for Rare Disorders, Inc.) as well as the ACCOI group supporting several self funded research projects. Though significant progress was difficult to achieve, it was the beginnings of awareness for the ACC community that discovering a cure was our own responsibility. Because ACC is so rare, large cancer organizations did not provide any funds or effort for ACC research.
Born November 27, 1948,
Passed away July 12, 2008.
Prudence headed the organization up until her passing on July 12, 2008. Her two fellow board members and close friends, Rod Rose and Brett Card, continued to support this growing and expanding organization as she had requested of them.
On May 1, 2009 Rod and Brett asked Dan Dube’ if he would be willing to take over as President, recruit a new Board of Directors of ACC supporters, and carry on the legacy that Prudence had begun. Dan agreed to assume that leadership position and asked four other very engaged friends and members of the ACC community to assume board positions and help expand the scope of the ACCOI. Since that time the mission, purpose and vision of the ACCOI has continued to grow with continued efforts made to increase the message of hope and support to the whole ACC community.
We have also formed a collaborative partnership with the ACCRF (Adenoid Cystic Carcinoma Research Foundation) who have been making immense progress in the area of scientific research. We both share a passion for supporting and helping ACC survivors, building a broader base of relationships among the whole ACC community, and supporting ongoing research for finding a cure for ACC.
Brochures about ACCOI are available.
To Contact us:
email [email protected]
Toll free Patient Support Line (888) 223-7983.
US Postal Address ACCOI P.O. Box 665 Hartsville, SC 29551
As a registered 501(c)3 non-profit organization, tax deductible donations can be sent to our organization office at our ACCOI postal address.
Information regarding our policy of Website Protection of Privacy and Security
Information regarding our Website Terms and Conditions Policy
Current Board Members
Tom Curry, President, Leawood, Kansas, Father of Jacque Curry, a 9 year ACC survivor
Dawn Dube’, Treasurer, Puyallup, Washington, Wife of Dan Dube’, widow of past President of ACCOI
Jim Pentz, Director, Bend, Oregon Widower of Joylee Pentz, who survived ACC for 18 years
Nancy Kneer, Director, Carrollton, Texas, 9 Year ACC Survivor