I Hope you are all well, Just a quick one really, just to touch base with you all. As you all know we have now got some amazing people that are sponsoring us at the moment. i.e Bookers wholesale. Well we are proud to announce another sponsor in the name of Crowns Stationary who are now also sponsoring us, so this foundation is now starting to gain momentum.
The Twitter (@ddrdfoundation) feeds and the Facebook pages (DDRDF and Dreaded Dee Dee) are all now gathering strength and more and more people are starting to become aware of who we are.
We have also started a profile with an app called Thunderclap which works by gathering support from users which you give by either Facebook or Twitter over a specific amount of time. For us it’s 2 weeks we need to generate at least 250 supporters once the target is reached the system sends out a super tweet or super post,which in theory can hit thousands of people, to give you an idea at the moment there are only three people supporting, but from those three people alone we would hit approximately 1200 users, so there is a massive scope for us to raise awareness of what we are doing.
Please check out the video and you will see how it works
The URL to log onto is here:
(just highlight the link and right click mouse and use option to go to the site)
Please log on and support your foundation we want to gain all the awareness we possibly can, Without support there is no foundation, So let’s all do this. Let’s “Stand up and Fight!!”
This is the story We have posted please check it out fully by using the above link.
We are a fledgling foundation that has been set up to help fund research into this disease and other diseases that largely go unnoticed or plain misdiagnosed.
My mother is a sufferer who was misdiagnosed for years and the doctors just didn’t understand the illness,at the moment there is no known cure for Dercums Disease and we know that a cure is a long way off, but we can start now to help build a future for the unlucky ones that could develop the illness, myself and my brother and sister also carry the gene and obviously we fret that our own children can also develop the disease,
If you have no idea about Dercums Syndrome (and lets face it most people don’t). The worrying thing about this illness it was first discovered and originally described in the medical literature in 1892 by the American doctor Francis Xavier Dercum.It was first thought that it only affected post menopausal over weight women in their fifties, but research has shown that is not the case it occurs in the age ranges between 35 and 50 yrs and affects both sexes even though it is more prevalent in women.
To give you more of an sight of what Dercums in please read below
Multiple lipomas and neuropathic pain are the cardinal symptoms of this disease. The associated symptoms in Dercum’s disease include obesity, fatty deposits, easy bruisability, sleep disturbances, impaired memory, depression, difficulty concentrating, anxiety, rapid heartbeat, shortness of breath, diabetes, bloating, constipation, fatigue, weakness and joint and muscle aches. Regarding the associated symptoms in Dercum’s disease, only case reports have been published. No study involving medical examinations has been performed in a large group of patients.
Treatment basically involves painkillers or cutting the lumps out which would be good if multiple lumps didn’t grow back in the majority of cases.
Please check out this YouTube clip
We are really trying to raise as much awareness as possible to get this Foundation to be the success it deserves to be and champion for people that are suffering unheeded from rare disorders not just Dercums and for that we need to raise £5000 to achieve charitable status and gain our all important charity number, after which the kind people of Barclay’s Bank have agreed to match the donations and then we truly have lift-off and can start properly funding the genetic research that we all so badly need.
Please help us to get the message out there.
Thank You Guys
Dercums Disease and Rare Disease Foundation
Viewed 22 times
Viewed 22 times