07/21/2024
It has been an incredible couple of months in our community, full of milestone announcements, all for the benefit of our children. So many talented mothers and fathers who work tirelessly around the globe for one reason: our children.
We are at a critical point in multiple research efforts at different locations. It’s time to come
together, to use our voices and our skills to make an impact larger and quicker than we can alone.
Recently NKH Crusaders held a conference in Boston and Joseph’s Goal held a virtual
conference in the UK with Nick Greene. After these conferences, Nick Greene, Joseph’s Goal, and other US Organizations held a meeting to align ways to better support the Global work being done on NKH.
Funding at this time for Nick’s work is being provided by Joseph’s Goal, grants and by other donators, but it was shared with us by Nick that his needs are beyond just funding. He has requested access to the Patient Registry and information already gathered by the US Organizations. We may be adding some additional questions for Nick to the existing patient registry questionnaire and will update more on that in the coming weeks.
So in that spirit, we are announcing today that the NKH Crusaders, along with their partners in the United States including
Brodyn’s Friends Foundation, The Nora Jane Foundation, The Lucas John Foundation, and The John Thomas Foundation, will begin a more collaborative working relationship with Joseph’s Goal in the UK. We’ve made this decision to help create an environment of transparency and trust.
It’s important to recognize, that we have always worked together and supported each other, and we are formalizing that now so that there is no confusion. We are all working together towards a common mission of curing NKH and finding better treatment options as soon as possible for our
children.
Our individual organizations will still be supporting the researchers that each organization chooses to support. However, we will be working together to make sure that the needs of our community around the globe, regarding any future clinical trials are met.
Our first two projects together in 2024 will be based on the feedback we received from the FDA and suggestions from Nick Greene. The FDA asked very specific questions regarding the barriers that we see as a community - getting to the clinical trials, financial and travel barriers etc. Please be looking for more information on that soon.
We also plan to collaborate with the researchers and each other to continue to build on an already robust patient registry. We are asking families who have not completed the registry to do so and we will be working with Joseph’s Goal and other US organizations to reach families that exist but have not yet been identified due to social differences. The information in this registry is
needed not only by US researchers but also Nick Greene.
We are excited about what the remainder of 2024 will bring for all of us.
During our recent meeting, Nick's budget needs and funding were discussed. To keep in the spirit of transparency, Joseph's Goal is to share how they have been financially supporting Nick’s work.
Below is a statement from Joseph’s Goal:
Dr Nick Greene and his research team at UCL are making huge strides in trying to solve the puzzle of NKH.
The majority of Nick’s research grants are specifically tied to fixed targets, but funding from Joseph’s Goal has no such restrictions - and therefore allows Nick to explore other areas of NKH. This has accelerated the rate at which Nick has progressed his research by years.
Joseph’s Goal has been funding Nick for eight years. We have already committed £955,000 ($1,212,000) to UCL.
Before funding Nick Greene and his research, Joseph’s Goal also committed £205,598 ($312,753) to Dr. Johan van Hove and his own NKH research studies.
Our funding, combined with all of the work that the US organizations have done can aid Nick Greene in moving research forward stronger and faster.
It is abundantly clear that we need each other. The researchers need us. Let’s truly come together and make the dream of a cure a reality.
Alone, We are Rare, Together we are Strong.
