We are pleased to announce that Shona Cobb will be working with us as our official ‘HMSA Marfan Syndrome Ambassador’.
Many of you already know that Shona is volunteering with the HMSA and works very hard to raise awareness of Marfan syndome within the charity.
Shona will continue to do this vital work and be available to offer more support to our members who have Marfan syndrome. She will also be the driving force to ensuring that Marfan syndrome is addressed with equal importance in our work; something that we are aware can be an issue and she will represent Marfan syndrome at every level within the charity. Shonawill also help identify information and education gaps that we may need to provide or to improve on.
Most of you know that a few years back the HMSA agreed to provide support, information and membership access to people with Marfan syndrome. This was in direct response to people pointing out to the charity, that they too had ‘hypermobility related’ conditions and that they too needed the type of support that the HMSA traditionally offered people with Joint Hypermobility syndrome or Ehlers-Danlos syndrome- hypermobility type.
At the same time we opened our doors to all Ehlers-Danlos syndrome types, Osteogenesis Imperfecta, Stickler syndrome and PXE. The combined conditions are known as ‘hypermobility syndromes’ or heritable disorders of connective tissue.
The HMSA will be identifying new Ambassadors for all of the conditions we support; Joint Hypermobility syndrome, Ehlers-Danlos syndromes, Osteogenesis Imperfecta, Stickler syndrome and PXE,
The HMSA is looking forward to working more closely with Shona and I am sure she would welcome any feedback from other people with Marfan syndrome, whether a current member of the charity or not.
Donna Wicks (CEO)