The Alex Jowitt Award is to recognise member contributions to raising awareness of Smith-Magenis Syndrome and the Smith-Magenis Syndrome (SMS) Foundation UK. Our nominations and winners for 2022 are:
WINNER – Lifetime Commitment Award
Clare and Evan Barker
Clare and Evan Baker, year in and year out, have been a constant champion for the Smith-Magenis Syndrome (SMS) Foundation UK, and doing it all whilst caring for their boy Toby. The amount of fundraising and awareness they’ve done has been amazing! The walks they’ve organised, the original Genny Bear relay which they were a significant part of the organisation team, local activities around Wrexham, and all with the absolute best intentions of supporting others.
WINNER – Recent Achievements Award
Lucinda and Julian Cobby
Since Theo’s diagnosis with Smith-Magenis Syndrome in 2019, Lucinda and Julian have gone above and beyond to make every single person they know, and also people they don’t know, aware of SMS and what it is. They discovered that he was the only SMSer on Ibiza, (with only one other in the Balearics), so they set about making people more aware of the syndrome.
In May 2021, they organised a challenging walk for Theo – Theo’s Uphill Challenge – where he walked up Sa Talaia, Ibiza’s highest point. This is a challenging walk for anyone, but for someone with SMS, it is especially difficult. They did a lot to publicise the walk and used the opportunity to talk about SMS on local radio, newspapers, and social media, gaining so much attention and awareness of SMS and raising £10,000 for the Foundation.
Just prior to our conference, Theo was strutting along the catwalk as part of the Ibiza Inclusion Fashion Day which was the culmination of Ibiza Inclusion week.
Susan Over and Alan Davidson
Susan is a lifelong fundraiser, supporter, and advocate for the Smith-Magenis Syndrome Foundation, and with her partner, Alan, they have really stepped up to the mark in the past year. Susan is sister to Matthew (24) who has SMS.
Susan regularly dons the SMS Genny Bear Mascot costume to promote the activities of the Foundation. Most recently she featured prominently at the starting line of the London Landmarks Half Marathon, as the only charity mascot there.
Alan, through his 1711 minute (27 hours) Game-a-thon, brought Smith-Magenis Syndrome and the Foundation to the attention of a totally different audience, that of the online gaming community. Whilst we know that our children with SMS enjoy technology and video games, this reached out to the software developers and gamers, raising £2,000 for the Foundation.
Susan and Alan never hesitate to talk about SMS and the Foundation. Even to strangers on the train. When on one journey Susan shared her sibling experiences, what SMS is, and the work of the Foundation to the couple opposite, to everyone’s surprise and delight, it resulted in a £10,000 donation to the Foundation coming from them.
Jacqui has been on a diagnosis odyssey with her son Otis who seems to fit into the “SMS-like” group.
For the past year, after matching Otis’s presentation to the symptoms of SMS, Jacqui has been relentless in raising Smith-Magenis Syndrome at every opportunity that comes her way and to every professional she meets.
There can be no denying that if they hadn’t heard of SMS before meeting Jacqui, they certainly will now know a lot about the syndrome. The list is extensive and includes medical professsionals, umbrella organisations, politicians, local disability charities, and journalists. On every occasion she has praised the Foundation’s work and the support we give to families.
Jacqui has also represented the Foundation at a DHSC / NHS England focus group on the UK Rare Disease Framework specifically to talk about her diagnosis odyssey for priority 1 of the action plan.
Whilst on her personal mission, Jacqui has opened up doors to the Foundation and strengthened our links within networks, helping us to be a partner of choice for genetic disorders and rare diseases.
Lulu is an active campaigner on the increasing of care charges for vulnerable residents including her son Matthew who has SMS.
Matthew has featured prominently in the campaign with the challenges of SMS being brought to the attention of the wider Sussex community and beyond.
Lulu was interviewed by Grayson Perry and featured in Grayson’s Art Club in December 2021 on Channel 4. “Warrior Carer” is currently on display at the Bristol Museum and Art Gallery.
Lulu has through her campaigning brought attention to Smith-Magenis Syndrome and the need for an understanding and supportive community for Matthew. Through her art, she has raised awareness of SMS within a different audience unconnected to genetic syndromes.