Volunteers are the backbone of our organization. This is your personal invitation to get involved. You don't have to have any special talents or large amounts of time. Many of our projects can be done when you're online, such as reviewing a medical journal to check for articles that would be of interest to patients. If you have a particular talent, just let us know what you like to do and we'll find a spot for you.
If you're thinking there is nothing you can do, start dreaming...expand your vision of what you think you can do. Someone who barely knew how to turn on the computer started the CTCL-MF on-line support listserv. Think about what you would like to see accomplished. Below are some volunteer opportunities we've identified. Let us know what you come up with.
• Write a grant
• Research funding opportunities
• Monitor an online medical journal
• Write a newsletter article
• Solicit articles from your physician
• Provide technical help:
• Website consultation
• Database software expertise
• Computer systems consultant
• Help with special projects:
• LyP patient pamphlet
• PUVA Resource Directory (Thanks to Doreen Hudson for directing this project)
The Mycosis Fungoides Foundation would like to recognize these volunteers who found a job for themselves:
Boulden Griffith has been the Mycosis Fungoides Foundation unofficial welcome person for Sézary patients since he joined the CTCL-MF on-line support/information listserv in 1997.
Tom Andrews of Maryland and Claudia Day of Virginia came to the American Academy of Dermatology meeting in Washington, D.C. in March and monitored the Mycosis Fungoides Foundation exhibit. By staffing the booth, Judith Shea and Judy Jones had time to attend meetings, while Tom and Claudia gave physicians a patient's perspective of the disease.
Noal Cohen has been a member since the beginning of the CTCL-MF listserv in 1996. He attended a CTCL meeting co-sponsored by the New York Academy of Sciences and Yale University School of Medicine, summarizing the proceedings for the CTCL-MF listserv.
Marcia and Rich Houchens took on the job of copying and sending out a booklet of journal articles when there was little information regarding CTCL-MF available to patients. They sent information packages to hundreds of patients. They gave up their "job" this year because there is more up-to-date information
Tom Crabtree has been a list member since 1997. He has done a tremendous amount of research and has been a valuable resource person. He has recently moved to the state of Washington and maintains a web site, http://tomsmfctclpage.homestead.com/index.html, with lots of CTCL information and links.
Where do you fit in? Let us know. Contact: Mycosis Fungoides Foundation at www.mffoundation.org, or call (248) 644-9014.
Join MFF: donate or volunteer.