Meryl is Chair and Coordinator of Soft Bones UK Hypophosphatasia Foundation. Meryl is married to Lewis and has two children, Maddox 4 and Ruby 2. Meryl studied Audiology (Hearing) at the University of Southampton and qualified in 2009. Since then, she has been working as an Audiologist across many NHS sites along the south coast and has most recently started work in the private sector.
Meryl became involved in the Hypophosphatasia community shortly after her son was diagnosed with the condition in 2014 when her son Maddox was just over a week old. Meryl sat on the panel as a patient representative for the NICE Highly Specialised Technologies Programme meeting for the drug Strensiq for use with Hypophosphatasia, which has now been recommended and approved by NHS England for use as part of a Managed Access Agreement for paediatric-onset Hypophosphatasia. It was shortly after this Meryl became involved with setting up Soft Bones UK, recognising the need for greater support for HPP families through sharing experiences, resources and contacts.
Away from work and the Soft Bones UK Foundation, Meryl enjoys running and spending time with her family and friends.
Meryl’s role includes; ensuring that the Board is achieving the legal requirements of a CIO, to be the first point of contact for the Hypophosphatasia community in the UK and to communicate with external agencies.
Susan is Treasurer of Soft Bones UK Hypophosphatasia Foundation. Susan is married to Alex and they have two sons, Lee and Adam and two grand-daughters, Charlotte and Ezra. Susan has been a hairdresser since the age of sixteen, originally qualifying and working as part of a team and later setting up her own business.
Susan is Meryl’s godmother and provided help and support to the family after Maddox was born. She became involved in the Soft Bones UK Foundation to help with fundraising and to raise of awareness throughout the community. Susan is a founder member and attended the first Soft Bones UK Foundation Family Day in Birmingham to raise awareness.
Away from work, Susan enjoys travelling and spending time with friends and family.
Susan’s role as Treasurer includes making sure the charity keeps proper accounts, reporting on financial matters and planning budgets for how the charity can make the best use of any money it raises.
As well as being a founder Trustee of Soft Bones UK Hypophosphatasia Foundation, Sandra provides administrative and technical support. Sandra is married to Peter and has three children, Kate, Meryl and Chrissie and five grandchildren; Ashton, India, Ruby, Paloma and Maddox, who has HPP. Sandra worked in education for 10 years and for the past 14 years has been an Engineering Compliance Manager at a major acute hospital in Portsmouth.
Following Maddox’s diagnosis and the uncertainty about his future, Sandra became involved in fundraising, with the main aim to bring HPP families together. This was achieved last year at the first Soft Bones UK Family Day in Birmingham.
Away from work, Sandra enjoys spending time with family and friends, especially her grandchildren, who keep her on her toes. In her free time, she swims and enjoys her garden or travelling abroad.
Sandra’s main role is to provide support and encouragement to her daughter Meryl in setting up the HPP Foundation, to ensure the charity meets its legal obligations, help with technical administration and raise funds.
Lee is Finance and Fundraising Coordinator for Soft Bones UK Hypophosphatasia Foundation. Lee is married to Simon and has four children; Shaun and Connor, her two older sons and twin daughters, Isabella and Sophia. Lee’s background is in the financial industry and she currently works for a main high street bank, dealing with savings and investments.
Lee became involved with the Soft Bones UK Foundation through meeting Meryl and Sandra. She is a founder member and attended the first Soft Bones UK Foundation Family Day in Birmingham. Lee is a driving force, providing much needed financial guidance and raising community support for fundraising events.
Away from work and the Soft Bones UK Foundation, Lee enjoys spending quality time with friends and family. Her weekends are kept busy with her twin daughters, who have very different personalities; Isabella who loves football and plays for a local team and Sophia who loves to dance.
Lee’s role includes promoting and facilitating fund-raising events, building public awareness and understanding of Hypophosphatasia and the Soft Bones UK Foundation in the UK and to provide support and advice for anyone who wishes to fund raise.
Rina is Communications Coordinator of Soft Bones UK Hypophosphatasia Foundation, looking after equipment and general liaison. Rina lives in Ely, Cambridgeshire with her partner and is self-employed, providing virtual support to companies primarily based in London. Rina is a flexible, efficient professional, accustomed to working at all levels and able to gain support and trust from colleagues and clients alike. She likes the idea of ‘doing something completely different’ and is embracing the challenges provided by Soft Bones UK Foundation.
Rina is aunt to Meryl and great aunt to Maddox, who has Hypophosphatasia. Her family connection and understanding of the lack of information and support for HPP families encouraged her to become a member of the Foundation.
Away from work, Rina enjoys spending time with her friends and family. She especially enjoys meeting up with friends in London and summer weekends at her caravan with her partner.
As a highly skilled office manager with hands-on experience, coupled with proven organisation and people management skills, Rina hopes she can help the Foundation become an established and well known national charity.