To describe the creation of a local non-profit 501(c)(3) foundation for patients with sarcoidosis. The mission statement of the foundation is to offer education to patients with sarcoidosis, their families and the public. The vision statement is to improve awareness and knowledge of sarcoidosis and to support research into the causes of the disease.
In 2004, several patients with sarcoidosis advertised a Support Group meeting by sending flyers to Pulmonary Function Laboratories and pulmonary physician offices throughout the Pennsylvania, New Jersey and Delaware region. Several of the Support Group attendees volunteered to create the Foundation. Legal papers were filed in Pennsylvania for the non-profit 501(c)(3) entity named the Sarcoid Education and Research Foundation (SERF). Donations were used to pay the necessary legal fees. A Board of Directors (BOD), including a Chairperson, was selected. The BOD included patients with sarcoidosis, family members, clergy, nurses and physicians. The daily activities of SERF were to be coordinated by a member-elected President and a Secretary-Treasurer reporting to the BOD. Committees were formed for Recruitment, Fund Raising, Newsletter, Research Funding, Support Group and Website.
Newsletters are mailed every other month to over 400 families. Reduced postage for non-profit organizations is used for cost effectiveness. An email delivery option is also available. The new 2009 Internal Revenue Service rules have made Conflict of Interest statements necessary for all Board of Directors members. To date, contributions and fund raising have not permitted research grant awards.
A local foundation to assist in patient education and sarcoidosis research can be successfully formed and maintained by a core group of interested people.
People with rare disorders, such as sarcoidosis, do not need to feel disheartened by insufficient educational materials and lack of patient advocates. Motivated patients, families and friends can successfully form local non-profit support organizations. Such local efforts can be rewarding and could lead to the future creation of a national foundation for patients with sarcoidosis.
Herbert Patrick, No Financial Disclosure Information; No Product/Research Disclosure Information