NAME OF ORGANIZATION: CONQUISTANDO ESCALONES
WEBSITE: www.conquistandoescalones.org
FACEBOOK: www.facebook.com/conquistandoescalones
TWITTER: @AceDistrofia
WHAT LGMD SUB-TYPE DOES YOUR ORGANIZATION FOCUSES ON:
We focus on Limb Girdle Muscular Dystrophy type 1F (LGMD1F)
IF YOU FOCUS ON A SUB-TYPE, IS THERE A REGISTRY AND HOW CAN PATIENTS JOIN?
Yes, we have created a patient registry and patients can contact
IS YOUR ORGANIZATION A NON-PROFIT? IF SO, WHAT TYPE:
Yes, we are registered in Span and in Italy.
WHAT INSPIRED THE CREATION OF YOUR ORGANIZATION:
The Association was created because of the necessity to spread the word about our disease and to find the funds required to carry out research. It was founded by individuals affected by limb-girdle muscular dystrophy 1F (LGMD-1F) in 2015 because in this year it has been discovered that the mutation in the gene that causes LGMD1F, makes the affected immune to AIDS and makes them be the entrance gate to a possible cure for this global pandemic.
WHAT IS YOUR ORGANIZATION’S MISSION:
Our mission is to raise awareness of rare diseases and the importance of studying rare diseases. Also, we build a database of LGMD1F patients for scientific research we are financing. We put in contact the research laboratories that are studying LGMD1F. We are constantly looking to raise money to fund the research. Help us to walk, help us to live! Together we can do it.
WHAT SERVICES DOES YOUR ORGANIZATION PROVIDE:
We provide support to patients with LGMD1F and other subtypes of LGMD and maintain the LGMD1F Patient Registry. Plus, we are constantly in contact with research laboratories.
We are primarily focused on research and development of treatments, rather than patient services.
WHAT IS YOUR ORGANIZATION MOST PROUD OF:
In 3 years we have been able to finance new research studies on LGMD1F, that were previously stopped.
WHAT DO YOU WANT THE WORLD TO KNOW ABOUT YOUR ORGANIZATION:
We are financing many different approaches including CRISPR and repurposing drugs already on the market for other diseases.
HOW CAN PEOPLE BECOME INVOLVED IN SUPPORTING YOUR ORGANIZATION:
People can help us to raise money for the research organizing events, making a donation or in other ways (look at this link to our website http://www.conquistandoescalones.org/web/en/how-to-help-us/)
WHAT IS THE BEST WAY TO CONTACT YOUR ORGANIZATION:
People can contact us at conquistandoescalones@gmail.com or you can also send us a message via Facebook.
IS THERE ANYTHING ELSE YOU’D LIKE TO ADD?
If you have a diagnosis of LGMD1F please contact us!!!
