Meet the man helping Aussies find the perfect (bone marrow) match

As the co-founder of the TLR Foundation, Neil Pennock is fighting to ensure every Australian in need of a stem-cell or bone marrow transplant, finds their perfect match. He’s this week’s Changemaker.

When Neil Pennock’s partner, Trace Richey, was diagnosed with Myelodysplastic Syndrome (a disease which stops bone marrow making healthy blood cells) in 2013, Pennock’s life turned upside down. 

After several rounds of chemotherapy, it was determined Richey’s only option was to have a bone marrow transplant. But just three weeks after the operation, he contracted severe graft-versus-host disease, a condition where the donor’s cells view the patient’s cells as foreign, and attack them. He passed away shortly after.

Through this experience, Pennock saw a need to help patients, encourage nurses to specialise in the care they give to blood cancer patients, and ultimately to find the next generation of stem cell donors. Named in memory of Trace, the Trace Lee Richey (TLR)  Foundation was born. 

The foundation’s main mission is to encourage more people to become bone marrow/stem cell donors, by educating Australians about the vital role of bone marrow, and correcting myths about how painful or complicated donating bone marrow or stem cells is.

As well as co-founding the TLR Foundation, Pennock has worked as a financial specialist for AMP for over 20 years.

For his work with the TLR Foundation, Pennock was also named as one this year’s AMP Foundation Tomorrow Makers, giving him access to funding to grow the organisation and further its impact.  

In this week’s Changemaker, Pennock discusses his path to starting the TLR Foundation, the things that inspire his leadership and why he loves his job.

How did you end up in the job you’re in now?

I’d read that over 18,000 people each year are diagnosed with a blood cancer like Leukaemia, lymphoma or MDS, but when that diagnosis is given to someone you love, in my case that was my former partner, Trace Richey, the world turns upside down for them, for you, and for the people around them. Thankfully many people are successfully treated with rounds of chemo and radiotherapy, but for others a stem cell or bone marrow transplant is their only treatment option. Some of those people have to rely on the kindness of a complete stranger to donate their stem cells. Trace was one of those people who needed to find a stem cell donor, but sadly he wasn’t able to find that perfect match.

I got to witness up close and incredibly personally what is involved with a stem cell transplant, the huge team of people involved at every step of the way, and the kindness and dedication of an entire team of people ranging from the doctors, nurses, caterers and cleaners, each of whom play a pivotal part in trying to save the lives of people with blood cancers and disorders.

That changes you, it brings out gratitude and humility on a level I have never experienced before and makes you want to help other people going through the same treatment, or the people they rely on. We saw a need to help patients, encourage nurses to specialise in the care they give to blood cancer patients, and ultimately to find the next generation of stem cell donors, so the TLR Foundation, named in memory of Trace, was born. Trace spent his entire professional career working in the not-for-profit sector so I know he would appreciate all we are doing to help others in his name.

What kind of difference are you trying to make in the world? 

Our first, and at the time our most ambitious, goal was to fund a room in the new, state-of-the-art blood and marrow transplant ward at Sydney’s St. Vincent’s Hospital, specifically designed to give stem cell transplant recipients the best chance of making a full recovery. 

After enlisting many dear friends and work colleagues and talking them into shaving their heads, jumping out of planes and running, walking or crawling 14km in the City2Surf, we raised $300,000 and the Trace Richey Patient Room has been operational since September of 2018. Having a state-of-the-art transplant facility is great but we need to complement that with specialist nurses, so our next goal was to establish a perpetual nursing scholarship for those wanting to graduate with a Master of Cancer and Haematology Nursing from the University of Sydney. COVID delayed that plan, but we are very proud to announce we have just met this goal and the first of many scholarships will be awarded in April 2022.

Our ultimate goal focuses on the fact that if there had been a better match out there, Trace could still be here with us. We are currently developing a university recruitment program called Oz Marrow to educate students and let them know just how easy it is to join the Australian Bone Marrow Donor Registry (ABMDR). TLR was proud to be one of the original partners of the Strength to Give recruitment program which introduced cheek swabs as a modern, simple and convenient way to join the ABMDR, but sadly government funding for this program has currently ceased, something we are focusing our efforts on changing.

What are some of the things that inspire your leadership?

My leadership is entirely inspired by the people around me. From the nurses who work day after day to care for those in need, to the doctors who have to make life changing decisions at a moment’s notice, to the entire allied health team who ensure hospitals run smoothly, and the people who have given up their time and money to help us achieve our goals. People can be amazing, and that is what inspires me.

What does an average day look like for you? 

My days have recently changed now the TLR Nursing Scholarship has become perpetual. The focus had been on working with groups of students to establish Oz Marrow as a sustainable student society to help recruit new stem cell donors. However, with the current Strength to Give cheek swab program now unfunded, my day is filled with ways to lobby the government and explain why we need to increase the number of younger, more diverse people on the ABMDR now, so we are no longer reliant on finding donors on overseas registries, making it easier and more cost effective to find domestic donors who better represent the Australian population.

What do you love most about your job? 

Knowing we are helping patients and nurses way into the future warms my heart. Leaving Trace with a legacy which will live on for decades to come, and doing something to make sure that every patient in his shoes has a better chance of living is all it’s about. He would be as honoured as I am grateful for all the support.