Action Duchenne does not routinely reply directly to comments on social media. However, given the understandable interest of the community following a number of recent posts, on this occasion the board would like to provide this clarification.
Social media postings
The trustees, staff and supporters of Action Duchenne have been disappointed at some of the postings from a number of sources throughout 2019. It is the nature of social media and discussion groups that rumours and questions will be levelled. Action Duchenne has a policy of not engaging in these discussions publicly but always welcomes direct communication with its supporters and the whole Duchenne community. It is the charity’s hope that online communities can self-moderate and where concerns are raised these can be raised directly with the charity’s staff and trustees. We are mainly parents of children living with Duchenne and are part of the same community and will always engage with any concerns raised.
Accounts
Action Duchenne, in common with other charities, is required to submit annual accounts to Companies House and the Charity Commission. The accounts were submitted on time to Companies House and met the end of July deadline and have been available there to view publicly since the beginning of August. The Charity Commission has a different deadline. There was a short delay in submitting the accounts due to a technical issue with the website. The accounts were submitted a few days late as a result but are now online and available to view.
Action Duchenne would like to assure the community that its accounts have been properly filed and are publicly available here: https://beta.charitycommission.gov.uk/charity-details/?regid=1101971&subid=0
Accident and Emergency App
In 2015 the A&E emergency application was conceived and funded by a collaboration of 8 UK charities and PPMD. As Action Duchenne hosted the current UK registry it was agreed that they would manage hosting the new website. This website is also used by the mobile application allowing the same information to be quickly retrieved on a mobile phone.
Whilst Action Duchenne managed hosting the website code, the information it contained and the site’s and application functionality, remained the joint responsibility of the original collaboration.
There has been a number of times the site has been made unavailable and there has been on-going discussions about moving hosting provider to ensure these outages were prevented. It was brought to the attention of Action Duchenne that the site was again unavailable and it was assumed it was yet another issue with the hosting provider. Last week the resources were procured to move the A&E code and content to a new provider but upon migrating the code it was discovered that it had been corrupted.
Action Duchenne asked for professional advice as to whether the application and website could be cleaned-up and re-hosted or was still vulnerable to data corruption. Unfortunately assurances could not be given that this type of vulnerability could not happen again and more importantly, due to the sensitivity of the information being stored, that a sophisticated attack could not be prevented that may cause data loss.
It must be stressed that no data loss has occurred in the current website corruption
Last week Action Duchenne took the steps to re-host the A&E information at https://www.actionduchenne.org/emergency/. This would mean the information was still available but the application and personalisation aspect would cease to function.
Action Duchenne are in the process of copying the information across to these new pages but had not yet directed the traffic from the original website to this new location. Despite the information not yet being fully copied, this redirection has now been enacted.
Action Duchenne regrets that until a new solution is created, that the mobile app and personalisation will not be available.
Action Duchenne and the other UK charities are currently collaborating on what will replace our current UK registry and the replacement and updating of the A&E application will form part of these discussions.
Action Duchenne is in discussions with the UK charities on a plan to replace the current UK registry with a modern and fit for purpose alternative. Whilst the discussions are ongoing, the charity commissioned an independent security review to ensure that the types of vulnerabilities seen in the A&E app cannot occur in the registry (that Action Duchenne is solely responsible for), the charity is happy to say that there were no serious findings and work is under way to address the minor findings that were highlighted.
Charity leadership
As is normal for any organisation, Action Duchenne has had a number of staff and trustees leave and join in the past year. It is expected this will continue to happen throughout the life of this and any other charity or business. For good practice in our Accounts, we list trustee cessations as ‘resignations’, however, we wish to clarify that, whilst one trustee was removed from post, all other trustees and staff left voluntarily for personal reasons or for career opportunities. We are delighted that the charity continues to attract new committed trustees and staff.
Action Duchenne is sad to inform the community that Shelley Simmonds, who has been working as our part-time CEO since June 2018, communicated her decision back in July to stand down from this role for personal reasons; she will be re-joining the board to continue her excellent advocacy for all those affected by Duchenne. On receipt of this news, the charity has undertaken steps to recruit a new National Director to take on the day-to-day management of the charity and this post will be filled shortly.
We would like to give our sincere thanks to Shelley who notably has undertaken this role completely unremunerated and wished for her contribution to be given entirely voluntary during the duration of her contract. This was a significant gesture and we are incredibly grateful for Shelley’s time and dedication. We remain indebted to what she has given to our charity over the last 15 months, and to the Duchenne community as a whole over the last five years. We continue to offer Shelley our support as a Duchenne Mum to her 6 year old son Fraser, and as our friend.
Unite gene therapy project
We wish to address the untrue communications which have been circulating amongst the community that Action Duchenne are no longer funding this vital research project. This information is completely FALSE – we continue to co-fund this project alongside Muscular Dystrophy UK and AFM Telethon. We have fulfilled our financial commitments to date and continue to do so.
Annual conference
Action Duchenne is excited to welcome the community at this year’s annual conference details, agenda and registration can be found here https://www.actionduchenne.org/annual-international-conference/
Again, the charity would like the community to know we are happy to discuss and address any concerns and we hope you can continue to support Action Duchenne with our vision:
We are working to deliver the vision through our three core objectives:
- Developing effective treatments for all by funding research, educating clinicians and researchers, supporting clinical trials and campaigning for access.
- Building a community by uniting families, educating about Duchenne and raising the profile of the condition to a wider audience.
- Striving for a more inclusive society by promoting the importance of human equality, day-to-day acceptance of disability and accessibility for those with Duchenne.
Summary
We wish to provide absolute certainty to all that support us, our board of trustees and excellent staff team remain dedicated to the vision of a world where lives are no longer limited by Duchenne muscular dystrophy. As a charity we have so much to offer this community and are committed to giving all that we can to the families that need us.
