Pictured (L-R): John Morris, Neil Pennock, Dr Debbie Watson, Chloe Sligar, Amal Elhage and Professor Ronald Sluyter
Community members vowing to make a difference
When John Morris survived cancer for the third time, he knew he had to do something to give back.
After Neil Pennock watched his partner Trace suffer and eventually die from graft-versus-host-disease (GVHD) he wanted to make a difference to help find a treatment.
The two have helped Dr Debbie Watson and Professor Ronald Sluyter bring personal voices to their GVHD research, assisting in grant applications and sharing their personal journeys with the disease, including helping Dr Watson secure a Cancer Council NSW Grant in 2019.
GVHD is a fatal side effect of bone marrow transplantation and occurs in up to 70% of recipients. Treatments are limited and there is currently no cure.
John first found Dr Watson and Professor Sluyter’s research through Cancer Voices Australia, following his own diagnosis with Burkitt lymphoma in 2010.
“I was sitting in a hospital bed at 2:45 on a Tuesday morning when they told me ‘you won’t reach the weekend.’ Over the next six months I was told three times that I wouldn’t reach a particular milestone,” John said.
“Having survived three times, counting my lucky stars and looking at the research that meant I was able to survive, when I came out of the hospital I knew I needed to do something to give back to the medical staff and the research staff who helped me through that.”
John said he thought his background in law, commerce and engineering didn’t lend itself to a medical research facility, but he could help within the grant writing process.
“My background in that space over the last 30 years has been around bid management and large-scale projects, so for me it’s about being able to translate those bids into lay terms. For me it was a chance to get involved in important research and try to improve the opportunity to secure grants,” said John.
Neil discovered Dr Watson through her successful AMP Foundation grant following the loss of his partner Trace, who passed away from GVHD following a bone marrow transplant.
“I have worked at AMP for the past 20 years, and their foundation offers grants on an annual basis. Debbie was the recipient of the AMP Foundation grant for her GVHD research, the year I lost Trace to GVHD,” Neil explained.
Neil is also the co-founder and chair of the TLR Foundation in memory of Trace, which encourages more people to become blood stem cell donors, and raises money for services and nursing scholarships. Last year Neil and Professor Sluyter with Ryan Park MP, Member of Keira, also successfully lobbied the NSW State Government to financially support check swab recruitment of 5,000 new stem cell donors to for the potential treatment of blood cancers.
“After Trace died, we raised $300,000 and now have a room in the bone marrow transplant ward in St Vincent’s hospital named after him. We’re currently raising $160,000 to fund a perpetual scholarship for a Master of Cancer and Haemotology Nursing at the University of Sydney,” said Neil.
Neil raised funds through skydives, head shaving and completing the City 2 Surf and now hopes to start fundraising for IHMRI.
“It is within our foundation’s constitution to fund and support research into the cure, prevention and treatment of GVHD. I’m more than happy to do whatever it is I can to help Debbie and Ron.”
Both Neil and John said they would recommend others to get involved with medical research groups in any way they can.
“It has been incredibly rewarding for me to help the people that are actually doing the research put a human face to what they’re actually studying. Trace was in hospital for 44 days after his transplant, and those days are inked in my mind. To come across people that are actively trying to find a prevention, treatment or a cure is incredibly personal,” said Neil.
John implored people to think creatively about how they can become involved with research.
“I did question what I could give, as I don’t have a scientific or medical background. I’m grateful for the opportunity to talk with scientists and medical researchers and let them see the human side of what their research can do for a person who’s suffering,” said John.
“To anyone who wants to help out, just ask the question, what is it that you can offer? You might be surprised. I didn’t think there was a position, I just wanted to know what I could do with my background in bid writing. You don’t know what you can do until you ask the question.”
If you would like to help us find ways to prevent and treat diseases like GVHD, please donate via our website.
If you are aged between 18 and 35 years and are of good health and wish to become a blood stem cell donor please visit the Strength to Give website.
Lizzie Jack, Media and Content Coordinator
t: 4221 5432