TreatSMA has grown tremendously over the last year. In a short space of time, with no funds we have established ourselves as serious stakeholders in the decision process. We have/are having a huge input into the outcome of Spinraza. This is ongoing with a member of TreatSMA being elected by NICE as a patient expert to represent the Community voice next month.
We have had newly diagnosed families contacting us now for quite a while. We feel we have played a big part in patients receiving treatment early or putting them forward for participants in trials.
As we grow so does the time needed and costs gathered. We are now looking into turning TreatSMA into a charity.
We have four Trustees who are also four co-founders: Lucy Frost, Kacper Rucinski, Gennadiy Ilyashenko and Kelly Jones.
We are looking for a willing person from the Community to be the 5th Founding Trustee.
We would like this person to demonstrate a commitment to SMA. Someone with ideas and the initiative to turn those ideas into actions. Also preferably someone with a history of fundraising and able to start soon. This is an unpaid position. We will reimburse expenses, including in-country travel costs to trustee meetings.
This position will last a year and may then be offered to another person.
If you are interested in this role and have the passion to help change lives please email us at treatsma@treatsma.uk telling us why you see yourself as a TreatSMA trustee. You must to be able to work legally here in the UK.
The Community at www.facebook.com/groups/treatsma.uk will then be given a poll to which they can vote. The other trustees will then speak to the three candidates with the highest community support to select the person to join the team. We are an advocacy group for the Community so it is very important the Community has a say.
This is an exciting time. We believe TreatSMA has a great future and if you would like to be a part of our journey and accomplishments then put your name forward.
Thanks,
– TreatSMA
