“I love making change and making people feel included”

Tiffany Hesson has won the Peter and Nancy Andrews Community Achievement President’s Award, for being prepared to put in the time and effort to make change happen to improve diverse representation in the muscle-wasting community.


In her first year as Muscular Dystrophy UK’s (MDUK's) Equality, Diversity, and Inclusion (EDI) Ambassador, Tiffany has been an influential spokesperson, representing MDUK, and championing equality, diversity and inclusion at a national level.

She tells us about what has motivated her to build a more inclusive future for her son, Roman, age four, who has LMNA-related congenital muscular dystrophy (LMNA-CMD).

“After Roman’s diagnosis, I read up on information, but I quickly realised when I went on the website and social media, I didn’t see people who looked like me and Roman.

“So, I worked with MDUK to see how we could make it more diverse. I’m very much in touch with my community so I said, “I’m here to help”. MDUK listened and welcomed the help I was offering.

I want to make Roman, and others who come after him, feel included and ensure this system works for them as well.

Tiffany and Roman looking at each other, smiling. They are stood with 2 characters from Paw Patrol.
A community champion

Tiffany is proactive and positive about making changes. She has embraced her role, which involves attending meetings with stakeholders such as Sajid Javid, the former Secretary of State for Health and Social Care, to give her perspective as a parent of a child living with a rare condition, as well as championing diversity, and encouraging the development of MDUK’s EDI document. She has shown her commitment to increasing the representation of people who have muscle-wasting conditions from every community.  

Beyond her work as an ambassador, she has also written a children’s book, Roman's Adventures On The Farm, to help children understand what it’s like to have a muscle-wasting condition, like Roman’s.

She explains “I love making change and making people feel included. I think that's just always been embedded in me – to not let people feel left out.”

“I’m humbled to receive this award”

Tiffany was stunned when Michelle Anthony, MDUK Trustee, announced that she had won the award, saying “I’m honoured. It’s not often I’m lost for words but I am on this occasion. It’s the passion for Roman, it’s all to make changes for him, that’s what keeps me going. The fact that other people have recognised that, I just find it amazing. Thank you so much for even thinking of me.”

Tiffany Hesson and son Roman
Michelle Anthony said it was an “absolute honour” to meet Tiffany

The President’s Awards judges were impressed by Tiffany’s community spirit, explaining that “everything she has done to really change the face of the EDI profile at MDUK is very special indeed”, adding that “she has been passionate about wanting to see her community better represented and has been prepared to put in the time and effort to make this change happen”.

The award was set up in honour of community champions

The Peter and Nancy Andrews Community Achievement Award was established in honour of the late Peter and Nancy Andrews, two exceptional supporters of MDUK. Peter and Nancy were involved with MDUK since it was established in 1959, watching it grow from a local Birmingham fundraising into the national charity that it is today.

Without any familial connection to the cause, they spent over 50 years fundraising for MDUK and were involved in setting up the first regional fundraising branch. With this award in their name, we want to recognise other true community champions. 

Our annual President’s Awards celebrate the fantastic contributions of our community members. Find out more about the awards and the winners here.