You will have received an email by now, celebrating a victory for Abi It is important we clarify that it is a final draft policy which confirms NHS England will commission the treatment for qualifying patients however we are not in the position to celebrate until we have the final policy in our hands which is expected in March. Of most concern with this final draft policy is that it only illustrates a maximum of 8 months of treatment even when a patient’s condition is proven to stabilise or improve when receiving Eculizumab!! The ethics of such a decision is being challenged, not just by us but by clinicians. We await NHS England’s response to this concern along with answers to a number of other questions and proposals we have put forward. We sincerely want to thank you personally for everything you have done so far to help our daughter. Not only has everyone’s campaigning given Abi hope but it has given hope to other patients suffering with this disease. So much has been achieved so quickly. In July 15, George Freeman launched an accelerated access review, also known as the Innovative Medicines and Medical Technology review. The aim is to ensure the UK is the fastest place in the world for the design, development and widespread adoption of medical innovation. To simplify this commits to patients, speed of access to medication and safety. At a conference in Uppsala, Sweden which was attended by 82 scientists and 22 research presenters from around the globe, a English scientist presented a picture of Abi and David Cameron, going on to showcase Abi’s campaign and illustrate the plight of DDD patients in England. So moved were the attendees they committed to plans for an international collection of data from DDD and C3GN patients. Since then patients have been called upon to provide to authorise the release of their data. But right now our fight continues for Abi, and every additional signature we can gather, every person who contacts us with information makes such an incredible difference. Please keep sharing and encouraging signatures because undoubtedly, without the support gathered to date we would have never made such progress and played such an influential part in making history. Jo & Andy Longfellow