What a wonderful week it was at the NKH Crusaders research conference in Boston.
As ever, we loved meeting other NKH families. It was lovely to catch up with familiar faces and friends.
It was also special to meet new families for the first time.
With so much going on, those few days passed in a blur. Even so, we still wished we had more time with everyone.
Strengthening important connections
Between meetings and presentations, we also had long and fruitful discussions with Kristen and the NKH Crusaders.
In turn, those conversations strengthened a transatlantic partnership that began more than a decade ago.
It was also really nice to catch up with Dr Van Hove and hear where he is up to with his NKH research in Colorado.
Meanwhile, we spent time with Nick Greene both during and outside the conference.
Those discussions confirmed why we feel reassured about the direction of our funding and enthusiastic about the future of the research.
Why this matters so much
The conference strengthened our belief that funds raised through Joseph’s Goal are going to exactly the right place.
As a result, we feel more hopeful than ever about the chance of building a greater understanding of NKH, finding better treatments and, eventually, reaching a cure.
As Kristen so passionately urged during her fundraising rally, the time to get involved is now.
The power lies with us. It lies with everyone reading this.
We came away from the conference with renewed hope.
However, hope needs action.
It will not happen by itself.
How you can help NKH research
Joseph’s Goal will continue to push forward and do everything we can.
At the same time, along with NKH Crusaders, we need as many people as possible to step up and get involved.
Whether it is a walk, a run, a bike ride, a cake sale or a car boot event, we can help you raise vital funds for NKH research.
So, please get in touch with whatever idea you may have.
Even if you do not yet have an idea, still get in touch and we will help you come up with one.
We have fundraising packs full of ideas, with step-by-step guides to help you run your own event.
Every new community we reach is a big step forward. In turn, that support helps Dr Greene push his work forward.
Support Joseph’s Goal through the lottery
Joining the Joseph’s Goal lottery is also an easy way to support the cause.
It costs just £5 a month, and there is almost £1,500 up for grabs in prizes every single month.
If you are already in the lottery, why not challenge yourself to persuade two friends or colleagues to join too?
In effect, that would triple your contribution, and it could make a huge difference in the bigger picture.
Looking ahead
The Boston conference felt like a huge step forward for everyone pushing for NKH research.
Even so, as all the speakers acknowledged, there is still so much more to do.
If you can help us push that work forward, who knows how much progress could be made by the time the next Boston conference comes around?
