Meet the Board of Trustees of CUREUsher
A few years ago, Joanne White and Carol Brill had a passionate weekend-long discussion in Carol’s kitchen in Dublin for the need of a charity specifically and exclusively dedicated to Usher syndrome research in the UK and Ireland. In late Summer 2018, Joanne seized the opportunity to set up this much needed charity and called on Carol and Deborah Heffernan to establish CUREUsher, because she knew that these two ladies shared the same passion and goals as she did. Very quickly, with all hands on deck, these ambitious ladies set about bringing the charity to life. CUREUsher was formally founded and registered with the Charity Commission on 20th December 2018 with Joanne, Deborah and Carol as trustees.
In March 2019, a new trustee, Ian Rankin, joined the Board of Trustees, specifically as Treasurer. CUREUsher aims to expand the Board of Trustees over the coming year in order to expedite its efforts to fund scientific research and to make Usher syndrome a disease of the past. To do this, CUREUsher wishes to encourage voices internationally; from patients, friends and families, to healthcare professionals and organisations – calling for more funding into a cure and treatment for those living with Usher syndrome.
Founder and Chairperson
Joanne White lives in the North East of England and since her diagnosis has always had a personal dedication into finding a cure for Usher syndrome.
Joanne came to global prominence when a YouTube video capturing an emotional Jo as her cochlear implants were switched on became one of the world’s most watched internet videos in 2014. This catapulted Jo into the public eye and she has since used her global platform to raise awareness through media appearances and inspirational talks. Jo has worked as a columnist and is a published author of Breaking the Silence in the UK and Japan. She also presents The Gift of Hearing, a Royal Television Award winning BBC documentary which captures Jo providing hearing aids to deaf and deafblind children in remote villages throughout Bangladesh.
With over 25 years’ experience of working in the non-profit sector, Jo has worked for various charities and possesses an in-depth knowledge involving Disability and Human Rights often working on leading campaigns in central government. She is known by many for her dedication, kindness and compassion, and has brought so much awareness to Usher syndrome.
Jo is a married Mum to 18-month old Teddy with another child on the way.
Director of Strategy, and Head of Social Media
When Deborah received her unexpected diagnosis of Usher syndrome in 2013, she immediately became involved in the Usher community. Originally known as UsherEire on social media, Deborah is friends to many people affected by Usher all over the world, thanks to her blog, social media and networking skills. Her passion for science gives her a great understanding and insight to all the developments in scientific research for treatments and cures for Usher syndrome.
The defining characteristics of Deborah are her loyalty and dedication. These qualities are a driving force for CUREUsher in its quest to make Usher syndrome a disease of the past. As Strategy Director, Deborah will, with skills from her engineering background, ensure the mission and goals of CUREUsher will be met with diligence and efficiency.
When she is not offering kindness, support and encouragement to fellow Ushers internationally or fundraising for charity, she is a busy mum of three at her home in Cork, Ireland.
Director of Scientific Research
Carol Brill lives in Dublin, Ireland with her daughter. Since her diagnosis of Usher syndrome, she threw herself into the search for a treatment or cure for this disease. She has since accumulated a wealth of experience of working with many national and international charities and patient-led organisations for nearly 30 years. These organisations include Fighting Blindness, Ann Sullivan Foundation, EUSN, DeafBlind International and Retina International. Recently, Carol has become a member of Retina International’s Usher Syndrome Special Interest Group. A passionate advocate for raising awareness of Usher syndrome, Carol’s experience and knowledge will complement her role as Director of Scientific Research of CUREUsher.
In her spare time, Carol loves to play with Irish Blind Golf, and she is currently the Irish Blind Open Ladies Champion and the British Blind Open Ladies Champion. She is also Secretary of Irish Blind Golf.
Up until about a decade ago Ian had never heard of Usher syndrome despite having moved next door to Jo’s parents a few days before she was born and, therefore, known her all her life. Ian has watched Jo grow into a very confident young lady adjusting to life with Usher Syndrome.
Naturally, Ian wanted to become involved in fundraising for Usher syndrome scientific research. His ideas have been very timely as CUREUsher was being set up and will be instrumental in building the charity’s international profile. Ian’s role as Treasurer is complemented by 32 years’ experience in banking, and his roles as treasurer and/or auditor with other associations and clubs.
Ian is married with two sons and three grandchildren living in Newcastle, UK. His spare time is devoted to listening to music and playing the guitar.