Dr. Herbst will be going to Sweden to give a talk on Dercum's Disease and work with other investigators and clinicians sometime in May/June. (Dates to be announced later.) Watch our site for more details. What an exciting opportunity for her to share her knowledge with others!
Please help her continue to learn more through research by donating to our fundraiser for the Dercum's Research Survey Project. Details are below along with the link to donate.
I'm excited to tell you about a new way we can help Dr. Herbst and ourselves!
Dr. Herbst has a project in mind that could begin soon. How many of you have read her article "Adiposis Dolorosa Is More Than Painful Fat"? That article helped us learn what symptoms are common with Dercum's Disease. Great information! But it was based on a survey done more than 5 years ago. Wouldn't it be great to not only get an update but to actually be a survey participant?
Dr. Herbst estimates that it will take $1500 to pay assistants to do mailings, enter and validate the data and do some preliminary analysis.
We can help by donating toward that effort! Cure Dercum's is organizing this and will keep track of all donations and donors. The money raised (minus paypal fees) will go directly to Dr. Herbst's research fund at the University of San Diego and will be earmarked for this project. Any extra money received will be saved for the next project. Periodic updates will be posted on the Cure Dercum's site. Once the money has been raised, an invitation to partcipate in the survey will be posted on our site and on facebook. If you were in the original survey, Dr. Herbst will attempt to contact you directly. If you were in the original survey and your contact information has changed, please contact her directly at kaherbst@gmail.com.
Donations can be made through the link on our site. If you are not able to use paypal but would still like to donate, contact me at damuffett@aol.com and I will give you some options or go to www.lipomadoc.org. (If you donate that way, please let me know so we can keep track of the donors for this project.)
Let's make this happen!
Diane
So you are saying that this is a small non profit group just starting out...do you have legal non profit status at this time? Is there a governing board as is required by US law for non profits? I want so bad to share this with others but before I suggest it, I need to know the actual legal status of the organization. Thanks.
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