A life-changing health diagnosis for her husband and daughter prompted Barb Roydhouse to include a gift in her will to the Neurological Foundation, in the hope of finding a cure.
Around 30 years ago, Barb’s husband Ray was diagnosed in his 50s with Charcot-Marie-Tooth, a rare genetic disease affecting just one in 6,500 New Zealanders. Shortly after that, their daughter Sophia was also diagnosed.
The progressive disease causes loss of movement and sensation in the hands, feet, arms and legs and balance problems. A person might have problems walking and some need wheelchairs and can’t use their hands properly.
After Ray’s diagnosis, Barb started donating to the Neurological Foundation in the hope that one day there would be a cure. She’s now been donating for several decades.
The idea of including a gift in her will came about after a professor told Ray there would be no cure in his lifetime, but there might be in Sophia’s through gene therapy.
“That is something I have always hoped will come to pass,” Barb says.
Donating regularly means there will be money to be used through her life, which is a “feel-good gift”, she says. She hopes the bequest, gifted to the Neurological Foundation when she passes away, will be used for research.
“Our gifting is not at all large but over the years hopefully will make a difference,” Barb says.
“I see leaving a bequest as being a structured way of helping a charity that is very close to my heart and is perhaps not as well-known as some other charities.”
Ray says he felt very sad while he came to terms with his diagnosis. He missed the things he was no longer able to do, but hopes to remain mobile for as long as possible.
Sophia is proactive in managing her condition and stays very active. Fortunately, she has only recently started developing symptoms in her hands and is now using a carbon fibre brace for her leg and foot.
Barb says: “It is a nice feeling to think that a donation may help many people as the research allows, over time. I'm just happy to know the money will be spent on research that may help our daughter Sophia and others when the time comes.”
Barbara and Bob Dawn’s generous bequest
Research into Charcot-Marie-Tooth disease is also being funded by the Dawn Fellowship, established by siblings Barbara and Bob Dawn.
Born in Auckland, they left a remarkable legacy to medicine when the siblings bequeathed a large sum of money to the Neurological Foundation to establish a fellowship in their name.
In 2022, the Dawn Fellowship started funding research into Charcot-Marie-Tooth disease, among others. Emerging neuroscientist Dr Whitney Whitford received the Dawn Fellowship for a three-year genetic study – the largest grant ever given to an individual by the Foundation.
Patricia Wilson’s gift in will
Patricia Wilson was diagnosed with Charcot-Marie-Tooth disease in her late 70s, but in hindsight her family believes she had the disease for many more years than that. She was a nurse and was always trying to find information. Even the neurologists seemed puzzled by her symptoms.
Patricia wanted to contribute to further research into Charcot-Marie-Tooth disease to help it become better understood, and she generously left a bequest to the Neurological Foundation. This led to landmark research aiming to study 50 people with the disease to test nerve conduction, strength and balance.
This is just one example of amazing research funded by the Neurological Foundation – and so much more is needed. By including a gift in your will, your values will live on, ensuring that the causes and communities closest to your heart thrive beyond your lifetime.