Increasing the Bone Marrow Registry for Maori and Pacific

In late 2015 Paul heard of a young 13 year old Samoan boy, Jake Cooper, who had been diagnosed three years previous with the rare form of Leukemia, CML (Chronic Myeloid Leukaemia). No-one wants to see a child die so young and with children of his own, naturally he wanted to find a way to help!

Knowing his accountants were Samoan and Maori, who shared his passion for helping communities and had the connections to help, he met with them to present Jake’s case.

Wyndi, Maori from Ati-Hau-Nui-A-Paparangi and Eli, Samoan born from Satapuala are community and business minded and do a lot of work in the Maori and Pacific communities. With six children themselves they instantly decided they too wanted to help.

From here they formed Be the Connection, with their first project being to increase the number of Maori and Pacific People on the Bone Marrow Donor Registry. This would increase the chances of Jake finding a match, along with the other 14 Maori and Pacific people also on the waiting list.

Bone Marrow Registry Numbers

When Be the Connection started helping investigate possibilities for Jake to get a bone marrow transplant as his only hope for a long-term cure for Chronic Myeloid Leukaemia, we realised that his part Samoan heritage made his chances slimmer than others.

As of July 2016, there were approximately 27 million bone marrow donors worldwide and of these, there were only 7,500 Maori donors and only 2,000 who identify as being of a Pacific Island heritage (of these 1,199 identify as being Samoan).

In New Zealand, there are 14 non-European patients needing a Bone Marrow Donor. Since 2014, there have been 21 bone marrow donors. The need far exceeds the availability of donors on the registry.

Be the Connection decided they wanted to help increase those numbers, not just for Jake, but for any Maori or Pacific Islander needing a transplant.

What are we doing?

Pasifika Festival

In March 2016, Be the Connection funded a site at the Pasifika Festival, to help raise the awareness of the Bone Marrow Registry among our Maori and Pacific people.

We invited NZ Blood Service along and flew Jake and his Mum, Renee, into NZ so they could be part of it.

Over the two days we registered 200 people on the Blood Donor Registry, who were then contacted to discuss joining the Bone Marrow Registry by NZ Blood Service.

BTC – Pasifika Festival

Blood Type Checking

BTC – Pasifika Festival

Creating Awareness of the Bone Marrow Registry

BTC – Pasifika Festival

Pasifika Festival outside our tent

BTC – Pasifika Festival

Working with the NZ Blood Service

BTC – Pasifika Festival

With Hon Alfred Ngaro, Minister for Pacific Peoples

BTC – Pasifika Festival

With Andrew Little and Members of the Labour Party

Sole Mio

While Jake was in NZ for the Pasifika Festival,we were able to partner up with the Dream Chaser Foundation and meet with Sol3 Mio and do a piece on TV3 News and Marae, again to raise awareness and increase the Maori and Pacific numbers on the Bone Marrow Registry.

The boys from Sole Mio also joined the Bone Marrow registry!

BTC – Sole Mio

Be the Connection and Dream Chaser

Partnering with Dream Chaser and Sole Mio

Fletcher Steel

In September we approached Paul and Hamish from Fletcher Steel about our drive to increase the Maori and Pacific numbers on the NZ bone marrow registry.

We started with their Pacific Coil Coaters (PCC) site where we met with and presented to their male staff members to raise awareness and talk about joining the bone marrow register. Our focus was mainly on Maori and Pacifica ethnicity but all were welcome!

In November we had the first PCC team give blood and join the bone marrow registry.

Since then the PCC team have put a challenge out to the Fletcher Steel’s other sites called “Be Bold”, encouraging the others to follow their lead!