By Ruth Lehrer for our first Newsletter found on our home page.
The Fat Disorders Research Society (FDRS) was founded in 2009 by Sue Grimshaw, Susan Smith and Carole Reed to promote research, increase public awareness, and provide information and resources for individuals with fat disorders.
In our first year, the organization set up a website and held an informal gathering which is now referred to as the First Annual FDRS Midwest Conference. The Second Conference was held in 2010 where Dr. Karen Herbst, one of the only fat disorder specialists in the United States, addressed a larger gathering of Dercum’s disease and lipedema patients. The organization was very active with networking, fundraising, and blogging and had a very active web presence. By the 2011 conference, the organization had made great advances in networking and dissemination of information.
The following year presented several setbacks due in part to quick growth, including website problems and an increase in volunteer workload. At the end of 2013, Felicitie Daftuar became President and the board reorganized to set us on a path to accomplishing our goals. Present board members are:
Cheyenne Brinson, President
Felicitie Daftuar, Board
Yvonne Russell, RN, CLT, Vice President and Conference Coordinator
Laura Baker, Secretary
Nancy Lazarus, Treasurer
Shannon Seeberg, Assistant
Since there is such a dearth of information in the medical community about fat disorders, our goals are numerous. One priority for everyone has been holding conferences where individuals can meet each other, lessen their isolation, and learn about treatments. Another focus is to establish an international collaboration among physicians toward research and focused treatments for fat disorders. Felicitie Daftuar says, “The key takeaway for the 2014 conference is that there are things we can do for ourselves. Exercise, nutritious eating, education... we want people to have tools to help themselves.”
After the conference, we need to focus on fundraising so that we will be able to accomplish our many objectives. One of our goals is to establish a protocol for treatment which will be available on our website. We’d like to provide more guidance regarding liposuction such as: What are the risks and benefits? What long term information is available to the patient? What should one ask when interviewing a prospective surgeon? We also hope to facilitate conversations between physicians providing surgery, so that all lipedema patients will receive the best possible treatment.
There’s a lot of work to do! FDRS is a non-profit organization and people like you are our greatest resource. A variety of opportunities are available to fit your interests and talents. How would you like to get involved?