February is officially the first ever Morgellons Disease Awareness Month!It comes at a great time because Charles’s birthday is February 12 (what a way to celebrate him!) and the documentary film, Skin Deep: The Battle Over Morgellons launches their Kickstarter campaign today. The foundation, president Cindy Casey, and many other members have an active role in this film and we hope you will support it. Director Pi Ware and his team are committed to raising awareness and creating empathy by sharing our stories.
Check out the new trailer and support the Kickstarter campaign for Skin Deep here: bit.ly/SkinDeepMovie
2018 CONFERENCE INVITATION
Our annual conference brings patients, physicians and scientists together from all over the world to discuss the very latest in Morgellons research and treatment. This conference is open to the public so invite your family members and friends so they can begin to understand what you’re going through. We have an exciting agenda planned this year and we hope to see you in Austin!
Early Bird Conference registration opens February 1st.
Participation in this patient registry will enable us to have an accurate collection of patient data, symptoms, and the impact that Morgellons has had on their lives, both socially and economically. This data is vital in getting Morgellons recognized as a real and devastating condition.
This survey was developed through Alta Voice, a company that specializes in Patient Insight Networks, which are known as PIN’s. A PIN is ideal for collecting, analyzing and sharing reported health data. Alta Voice has developed over 400 unique disease registries. The company works with the NIH, advocacy organizations, academic researchers, pharmaceutical developers, and biotech companies. Those individuals can view and analyze the de-identified data provided by patients to develop research, clinical trials, and new drugs.
Visit Alta Voice if you would like to view their other patient insight networks. Many of these PIN’s have had amazing success with their registry.
A big concern is always patient privacy. You will be given the opportunity to share or not share your own data. If you decide to share your data, please know that it is all de-identified. Anyone that accesses the registry (researchers, drug companies, etc.) will never be able to see your name or personal information. They will only see your answers to the questions. Of course, it is best for all Morgellons patients to share your data because that is the purpose of the registry.
After you register with a username and a password, you will be directed to three different surveys. The first is the actual Morgellons survey. Then there is a General Health and a Family Health survey. They are all short and easy to understand.
Please, for the sake of all Morgellons patients, complete these surveys! Share the link and any information with every patient you know. We are all in this together and this is an important step that WILL help us all.
THE 2017 CONFERENCE DVD’s
In celebration of February as Morgellons Awareness Month our 10th Annual (2017) Conference DVD is on sale for $40 for a limited time only. The regular price of $65 will resume on March 1, 2018. The 10th Annual Conference was the very best to date so order soon whiles supplies last.
SUPPORT US ON FACEBOOK
Please join us in adding our Morgellons is Real frame to your profile picture on Facebook. We purposefully chose this messaging rather than, “I have Morgellons” in case you want to say you KNOW someone with it, rather than “outing” yourself.