We are hosting our #ThinkHand awareness event tomorrow night. We were hoping to get Theresa May to attend and endorse the event. At least she responded. JK Rowling didn't even acknowledge our invitation. Very poor form?
What is the #ThinkHand Campaign?
#ThinkHand is simply an awareness campaign with the primary objective to get the wider MS community to focus their attention on hand function, particularly in people with more advanced MS. If you have MS and you lose the ability to walk, your hands and arms become your legs. Hand and arm function keeps you independent and allows you to maintain a reasonable quality of life. Recent clinical trials showing that disease modifying treatments, in people with more advanced MS, may delay worsening of their hand & arm function despite having very little, or no, impact on leg function.
The #ThinkHand campaign has achieved, or is trying to achieve, the following:
- To get the research community to study several hypotheses that underpin the science behind the preservation of hand function in MS and to design better trials for people with more advanced MS.
- Design, test and validate an environmentally friendly cardboard 9-HPT to allows pwMS to self-monitor their arm & hand function.
- To survey UK MSologist’s attitudes to the importance of hand function in MS.
- To perform a clinical trial to study the effect of subcutaneous cladribine in MS wheelchair users (Chariot-MS Study).
- To challenge the NHS England guidelines for stopping DMTs when people with MS develop secondary progressive MS and/or start using a wheelchair.
- To get the pharmaceutical industry to do trials in more advanced MS focusing on hand & arm function as the primary outcome.
- To validate the 9HPT as a primary outcome measure in clinical trials.
- To develop a new personalised, or humanised, outcome measure to assess hand function in MS.
Labels: #ThinkHand, JK Rowling, Theresa May