In pursuit of its mission, the National Scleroderma Foundation operates on multiple levels to provide emotional support and disease education to people affected by the disease, at the same time that it funds innovative research to discover the cause, understand the mechanism, and overcome scleroderma forever.
Individuals affected by scleroderma, which includes caregivers and family members, find great value in connecting with others who are also traveling on the scleroderma journey. While no two cases are the same, paths often pass through similar stages. Those who have lived with the disease for a long time have great experience to share with others whose scleroderma is recently diagnosed. Support groups are essential in this effort. Led by volunteers who tend to also have scleroderma, support groups provide a safe space to share and learn. To ensure a quality experience for all, the Foundation provides training to all support group leaders. The training is a model program developed in partnership with our colleagues at SPIN (Scleroderma Patient-centered Intervention Network). Called SSLED (Scleroderma Support group Leader Education), the training is comprehensive and prepares group leaders for the roles.
Connecting with others affected by scleroderma, even in an informal or recreational settings can often be just as therapeutic as counseling. The reason for this is frequently expressed by those with the disease by saying, “it’s a relief to spend time with someone and not have to explain my disease; I can just have fun. In one sense, every activity offered by the Foundation actually doubles as a setting for social connections, and those connections are invaluable.
It’s often been said that knowledge is power. When confronted with a diagnosis of a chronic and sometimes life-threatening disease, the best way to prepare yourself for coping emotionally and physically is to gain as much information about the disease as possible. And, that’s where the National Scleroderma Foundation comes in.
Our education programs occur on several levels. Firstly, this website is a wealth of information both about the disease and symptom management, but also about the scleroderma community and related activities. Secondly, we offer educational programming with leading experts in the scleroderma field, where people affected by the disease can have indepth discussions to gain greater understanding about what’s happening in their bodies. Our education programs happen at the national level and at the local level. The National Scleroderma Conference is our signature education program and is highly regarded by both individuals with the disease and by those in healthcare and the pharmaceutical and biotech industry.
Scleroderma education also happens online through live webinars and recorded presentations. A library of videos, many recorded during the national conference, cover the breadth of issues a person with scleroderma needs to know.
The investment in research is absolutely vital because it is our hope for a future without scleroderma. It is our hope for effective treatments to stop progression of the disease and therapies to repair damage caused by scleroderma. The Foundation’s peer review research program is well-respected and follows the same merit based evaluation model used by the Natioal Institutes of Health (NIH).
Our funding of scleroderma research happens in two main categories: new investigator and established investigator. Both avenues provide sufficient funding for the scientists to demonstrate the viability of their theories and to build data to then apply for significant funding for sources such as NIH. Many of the world’s leading scleroderma research scientists started their careers with funding from the National Scleroderma Foundation.
The most critical factor in scleroderma research funding is the volume. Scientific research in any disease category requires a high volume of activitiy in order rapidly advance the body of knowledge. Individual investigations slowly lay one course of bricks at a time. But a robust funding program lays multiple courses simultaneously. This is objective the Foundation is aiming for. The dramatically increase research funding so that an army of scientists are pursuing every possible line of investigation.
The community of scleroderma scientists and clinicians is small, but well connected. They have begun a remarkable new program to share scientific knowledge from the cutting edge of scleroderma research in real time, without the delays caused by traditional publishing. The Foundation is proud to the facilitator of that ground-breaking effort.