Below is another story of a family living with Kennedy's Disease and their efforts to help find a cure for this condition. The non-profit they formed is in Great Britain.
Starting up a non-profit is never easy. Susanne and Terry Waite started the Kennedy's Disease Association (KDA) fifteen years ago. They sacrificed a lot to make it happen and even more to grow the KDA into what it is today.
I applaud the efforts of Ms. Hopps and her team and wish them the best as they move forward with KD-UK. Their website is: http://kennedysdiseaseuk.com/
“Monday 8 June 2015
A NEW national charity aimed at tackling a rare neuromuscular disorder has been launched by a Dorset woman.
|Kate Hopps (right) with her sister, Louse|
When Kate Hopps, 43 of Martinstown, found out her husband of 21 years Frank had Kennedy’s Disease, her world was turned upside down.
Kennedy's Disease (KD) is described as an inherited motor neuron disease that affects men. There is no cure for the disease and no current treatment.
Kate said: “It's very scary when you're told that your husband has this disease because so few people know about it.”
Follow this link to read the entire article: http://www.dorsetecho.co.uk/news/13319570.Dorset_mum_launches_charity_to_battle_rare_disease/