Blog by Florence Boulton, National Director
Welcome to this month’s blog, the most part written during our steaming hot heat-wave, and most recently in what feels more like Autumn than August!
Summer certainly arrived in style, with the children breaking up for the holidays amidst record temperatures, after a challenging year. Many of you have been able to finally enjoy the first break away for nearly two years and we hope that, whatever you are doing this Summer, you are keeping healthy and staying safe.
Myself and my team have lots planned over the next few months and are focussed on our projects to make sure we serve you, our Duchenne community, to the very best of our abilities.
A heartfelt thank you and fond farewell
It was with some sadness that we announce our trustee, Zac Fargher, has resigned from his position on the Board, and will be leaving the UK in August, to return to New Zealand.
On behalf of the staff and trustees, I would like to take this opportunity to thank Zac for the enormous contribution he has made over the last 19 months.
Helping us grow
Over this time, we have achieved so many wonderful things – Zac has been generous in investing his time and helping us to grow as an organisation. His diligence and wisdom will leave a legacy through the work Zac has done with the board to help strengthen Action Duchenne’s positive culture and build our determination to do the best for our community. As well as sharing his skills and expertise, he has directly contributed to our service development and increasing the impact of our community fundraising.
It has been a challenging period over Zac’s time with us when we needed help and support to sustain the charity through the challenges of the pandemic and its pervasive effects on our community. I am so grateful for his excellent skills and expertise that have been truly invaluable through this challenging period, and for the guidance he has provided to me personally over his time with the charity.
Making an impact
At the heart of it we truly appreciate the amazing support and professional advice that Zac has provided. Some examples of the work Zac has supported us to deliver during his time on the board are: ensuring our Duchenne young people, adults and their families are at the centre of our decision making; expanding high-quality services; widening our portfolio of income streams; better collaborating and networking to develop support and care more widely for young people, adults and their families living with Duchenne.
What a pleasure having you ‘on board’. Really sad to see you go as you have been such a great addition to our charity. Good luck settling back in COVID-free New Zealand – having just watched a Netflix docu-series about New Zealand, I am more than a little envious!
Mark Silverman, Trustee of the Board
Zac will leave Action Duchenne in excellent shape with his legacy in the strategic direction we have set to best meet the future needs of our Duchenne young people, adults and their families.
I would like to take the opportunity to thank Zac for everything he has done and wish him and his family the best for the future.
Music & Me
Last month we shared the second of our ‘Music & Me’ podcasts, hosted by our wonderful Ambassador and master of broadcasting, Jonny Gould. Hip-hop artist, producer, journalist and activist, Sanjeev Mann talked about his music, and outlook on life as an adult living with Duchenne,
I’ve never just stopped and thought what I can’t do, only what I can do.
Sanjeev Mann
Look out for the next instalment from Jonny over the next few weeks.
Sharing lived experiences
You may have noticed over the past months we have proudly shared a number of blog posts and articles written by a range of people from the Duchenne community. A big thank you to each of our contributors for sharing their stories.
This month, we experienced the true impact of these posts, following a Duchenne sibling getting in touch with us after Lyndsey Kaye’s blog about her eldest son.
We have also helped raise the profile of the vitally important Changing Places Day, through a piece by Lizzie Deeble.
We are privileged to amplify the voice of our Duchenne families and in doing so, they are making a real difference to others’ lives. If you have a story to share and would like to join our team of contributors, please get in touch with Lynnette via lynnette@actionduchenne.org.
Fundraising heroes
Demonstrating absolute focus last month, despite the scorching heat, was John O’Brien, of Derry, Northern Ireland. John cycled the gruelling 610 km across Ireland from Mizen Head to Malin Head, raising money for Ireland’s ‘Join our Boys’ and Action Duchenne. So far, John and his team have raised an astonishing £4,743, over double their original target! Thank you John for choosing to support our wonderful charity, and a big thank you to the O’Doherty family for your dedication and unswerving support.
I also want to extend an enormous thank you and congratulations to two other incredible fundraisers; Deborah Holland and Lex Ellison, who both smashed their challenges last month.
The money you have raised will be used wisely, with 87p in every £1 being spent on charitable activities (ground-breaking research, cutting edge education and world-class support).
Thank you, for your hard work and the hours of training and ultimately for helping us raise the profile of Duchenne in your communities.
Taking action Drew’s Way
It is common for Duchenne families to feel out of control after the initial diagnosis. Certainly, the grieving process is unique for everyone, but that feeling of powerlessness is a common factor.
One family who have grasped life by the horns, taking action and control following their little boy’s diagnosis are Molly Pitts and Zak Denny. Buoyed by their close family and friends, the couple have set up a family page ‘Living with DMD Drew’s Way’ for their son, Drew.
‘Drew’s Way Walk’ took place this month along the beach in their home town of Lowestoft. The family certainly raised the profile of Duchenne, with a sea of blue AD t-shirts along the promenade!
A huge thank you to Molly and Zak, we are all proud of the positivity you have shown so soon after Drew’s diagnosis, and a huge thank you to your friends and family for their incredible support.
And finally
Last but by no means least, this month I am absolutely thrilled to tell you that we have opened registrations for our virtual Action Duchenne International Conference 2021!
Tickets are free for Duchenne families and there will be something for everyone, from updates in research, how to live the best life with Duchenne, standards of care and some very special themed sessions. I hope you will invite your friends, family and professionals so they can join too, and get as much out of the event as possible.
Places are unlimited for Duchenne families so please feel free to share this link far and wide.
If you represent a company and wish to discuss exhibition or sponsorship opportunities please contact info@actionduchenne.org.
As always, if you have any questions please do not hesitate to contact me or my team, and if we can support you in any way, please reach out.
Have a happy and healthy summer!
Best wishes to you all,
Florence
Farewell and thank you to Zac Fargher
