End of the line
Tue, 2016-08-23 09:16
Following our visit to Saratoga Springs and our meetings with Dan Bobear and Prof Cynthia Magro , Judith has been reviewing her position with regard to managing the website.
Firstly a few salient points:
Judith set up the website 18 years ago. During this period she herself has been very ill on a number of fronts.
In 2003 I prematurely retired to help care for Judith.
We have incurred significant costs in running the site. Fortunately I was given a commission based agency ,which is now terminated, which allowed us to maintain the costs of the site and the large amount of travelling that Judith has undertaken giving support to patients , and indeed doctors. That agency is now finished and I am totally retired.
The emotional stress for Judith over the years has been substantial.
We now feel the time has arrived to let go. On 15th October we return to South Africa for winter and we would like to pass on the website and the presence of Degos Disease on other social media sites. before we leave. As I understand it you had hoped that Dan Bobear’s company is prepared to take over the site and that Ernie DuPont and his family will set up a Degos Disease Foundation.
Since returning from our visit Judith has done an enormous amount of work but has finally had enough. It is difficult to make progress alone.
Below are some of the areas to be taken over.
degosdisease.com and the email address email@example.com
This will involve daily moderating and monitoring the forums, answering enquiries and individual messages, updating and adding journal papers (via Google Alerts), adding appropriate images and videos. Distribution/ collation of questionnaires for sociomedical data collection. Advice on how to donate to research/ biobank. Regular letters to registered patients.
@degosdisease on Twitter – 311 followers, mainly medical personnel – regular updates, posting images, etc
Pinterest – Judith Calder – Degos Disease – 85 images so far
Instagram – JMC – 29 followers
Facebook – Degos Disease Support Network – 62 members
LinkedIn – Judith Calder (Degos Disease) – 714 connections, mainly medical professionals, requesting details of any patients for registry. Also used for adding new experts to Doctors in Contacts.
Rare Disease UK
Dermatology PSG Network
Webmaster annual fee and extras as required
Website registration fee monthly
Printing and mailing cards, posters & leaflets for distribution at conferences
Travelling to represent Degos Disease Support Network and to support individuals.
Tue, 2016-08-23 09:20#1
PS Apparently Alan and I got
PS Apparently Alan and I got it wrong – The-PEP’s involvement is a short term technical one. They will produce some short videos to be used on the various social media platforms, to raise awareness of Degos disease. So please ignore that part.
Tue, 2016-08-23 15:18#2
I know we can all agree that Judith and Alan have been a treasure to the world of Degos disease, with all the people that they have helped and brought together through this website!! I wish only the best for them as they go forward in their journey.
I want to clarify something from Judith’s letter about my family and I starting a Degos disease Foundation. We have never verbalized that idea to anyone. We are currently working on the Steffens Scleroderma Foundation’s Board. Ernie is the Chair and I am on the Events Committee. Over the last 6 months we have been trying to establish a Degos Disease DBA under the Steffens Foundation. A DBA is a Doing Business As name. So if we wanted to have a fundraiser and appeal to our friends and family and the Degos community at large we would use the Degos DBA to publicize the event, but all funds raised would go to the Steffens Foundation to help Dr. Shapiro and his work. It is just a means to leverage the name and be able to do more fundraising. We have always had a difficult time associating ourselves with Steffens Scleroderma Foundation, because our friends, family and others who know us do not understand why we are involved with scleroderma. We know they are related diseases, but not everyone does. We have come up against a roadblock in this area. Some on the Board don’t want us to have a Degos DBA. I don’t understand, but some are entitled to their own opinions. Some day Ernie and I won’t be on the Steffens Board and we would like the ability to still raise funds for Dr. Shapiro, but do it under the Degos Disease DBA. That is what separates Steffens from every other Scleroderma Foundation is its work with Degos Disease. In fact we are the ONLY Foundation in the Western Hemisphere that focuses on Degos Disease.(along with related diseases). Hopefully this gets resolved soon and we are able to do this.
I hope everyone is well and continues to do well. I pray for the Degos community often! God bless you all!!!!
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