In Memory Of Judy Windle

It is with great sadness that we share the news of the death yesterday (August 24, 2014) of our dear friend and colleague, Judy Windle.

Judy was originally involved primarily in the development of Muscular Dystrophy Ireland (MDI), through her son Mark who was affected, and who sadly passed away in 1980. Her role in MDI was inspirational to many other parents and family members who were facing similar challenges to hers. Taking this painful experience and channeling it to help others was a hallmark of Judy’s remarkably generous life story. In 1997 we were thrilled to see her work and dedication recognised as she was honoured with a Person of the Year award for courage and service to the community.

In 1988 she was involved in the foundation of the Genetics and Rare Disorders Organisation (GRDO) and she remained active as a board member with GRDO until her death. One of the legacies of her leadership within GRDO was the establishment of the National Centre for Medical Genetics based at Crumlin Hospital, a service which has impacted the lives of countless families who are living with rare diseases in Ireland. She was also instrumental in the production and planning of the Europlan Ireland initiative, a project designed by the European Organisation for Rare Diseases (EURORDIS) to assist European countries with the tools to develop and implement National Plans for Rare Diseases in each member state. This was a huge undertaking which Judy thoroughly believed in and it is wonderful that the National Plan for Ireland was accepted by the Irish government and published in July 2014, during Judy’s lifetime.

Her trojan work in the area of rare diseases and her personal attention and compassion for people who were facing diagnosis and the reality of living with challenging conditions, had an enormous impact on the many families with whom she came into contact. Anne Lawlor remembers the personal care and compassion that Judy showed to her when her daughter was diagnosed: “Judy was an inspiration to me and helped me to have faith in my own capacity as a mother caring for my own daughter with a rare condition. Her advice and support were invaluable to me and she was a true role model as I went on to establish a support group of my own for families dealing with the same condition as my daughter.”

To all who worked alongside her, Judy was a kind, supportive but strong and resourceful woman, who always put the needs and concerns of others at the root of what she did. Her dedication and determination to improve the lives of people affected by rare and genetic conditions will leave a lasting impact on many many people. We extend our heartfelt sympathies to her children Siobhan, Nicholas and Henry and to her wider family. Rest in Peace, Judy.