Newsletters

From the Executive Director

by Judy Jones, MFF Executive Director

Spring is a time of renewal and growth and the MFF is in that frame of mind. Five years ago we set in motion an organization to provide patients with information about their disease. We have done that and a whole lot more. We provided a booklet for patients, established a website and published a newsletter to disseminate educational materials to patients, family members and health care providers. We continue to forge strategic alliances with medicine, industry and government to advocate for and support the needs of patients.

As we look at what still needs to be accomplished, it is obvious that we need more help. As Claudia mentions later in the newsletter, “we’re just ordinary people.” We have ordinary lives just like you. Many of you have asked how you can help and we haven’t been very good at getting back to you. We are going to improve this. There are many things that you can do from your home. We are in the process of listing our needs and positions that volunteers can fill. We will also post this information on our website so if you are looking for ways to be a part of the organization that is working to find a cure for this disease, let us know.

Being a grass-roots organization means that we started with very little money and a lot of enthusiasm. As Margie stated in her letter, she was surprised that we didn’t have a lot of financial backing. We have been fortunate to have Ligand (Targretin Gel, Targretin Capsules and Ontak) and Therakos (Photopheresis) that have provided us with educational grants for this newsletter and other special projects. Our main operating expenses come from members like you who not only join the organization, but also donate a little extra to keep us going. Your donations mean a lot to us. We have received a sizable donation in memory of a patient who will never benefit from this person’s generosity. Many of you will. You will be hearing more about this in future issues.

A question that keeps coming up is, "Why are we called the Mycosis Fungoides Foundation"? We actually provide services for many other diseases (Sezary syndrome, lymphomatoid papulosis and other cutaneous lymphomas). It is time to update the name to give people an indication as to what we do. We will be looking into a name change in the next couple of months and would like your input. Send us your comments and ideas.

We always like to hear about what you like (and don’t like) about what we are doing. How have we helped you? What else would you like to see us do? This is your organization. Help us to make it better!