Dear Pack,
For those of you who are new to the charity or the New York trip, I hope this letter helps in the understanding of what is the purpose of the Pack.
What’s the Pack for? What is it about?
For those of you who have been there and done it, I wanted to offer a résumé of your achievements.
For those participating for the first time, I hope to show the outcome of collective effort.
The ‘about’ is easily demonstrated via the Pack’s achievements.
So, let’s go back to 2015, and I’ll lead you through some of the organisations we’ve supported and the people we’ve helped. I would like to emphasis the ‘we’. None of this could have happened without your efforts, enthusiasm and generosity of time and money; none of this could have happened without a spirit of partnership.
2015 – We engaged with University College London Hospital, specifically Dr Mark Gaze and his team in the molecular radiotherapy team. You had helped them before and they wanted to further
develop his very specialised aspect of radiotherapy that is an important weapon against Neuroblastoma. Many cancer treatments involve the hope of cure and the risk of secondary effect.
The importance of tailoring the dose to the patient cannot be overstated, too little and its impact lacks power over the illness, too much and the child risks secondary damage. We provided £203,000 over the course of 2015 – 17 to support the trial.
2017 – 19 – We joined with other charities to fund a clinical trial being led by Dr. Juliet Gray based at University College Hospital Southampton. The trial, known as MiNivAn spread internationally too, with other researchers in Germany and the USA aiming to join the program and ensure that the potential pool of eligible children grew. MiNivAn was designed to incorporate new therapies that can be added in combination to standard anti-GD2 immunotherapy. It’s purposes were to test the combination of I-131 mIBG, an antibody called Nivolumab which promotes cell death, and standard anti-GD2 therapy. This will hopefully create an immunity to neuroblastoma, which is promising for relapsed patients as it works differently to specific chemotherapy drugs. The ultimate aim is to reduce the number of spots of disease a child has so that they can continue on the standard treatment path to hopefully achieve remission. We provided £100,000 to support the trial.
2020 – 21- We joined with Solving Kids Cancer UK to create a fund for the purposes of grant making to families ‘living with neuroblastoma.’ This fund aimed to provide a basic level of support to all families with a child in treatment or with a child recently off treatment. The Children’s Cancer and Leukaemia Group had directed additional restrictions to families in or within six months of treatment to safeguard patients. The principle behind the creation of the fund being ‘was a child additionally vulnerable to the effects of contracting the virus and, therefore, what additional
isolations, burdens would impact the family’. The design of the grant making process was designed to quickly confirm eligibility and consisted of a simple application. The availability and purposes of the grant was advertised on- line and through professional agencies already aligned to the treatment and assistance of families. J-A-C-K provided £50,000 during this reporting period to support the fund. Solving Kids Cancer matched the amount(s). Funds were distributed to families over two grant making rounds. The funds have supported over 50 families during the 2020/21 reign of the pandemic.
2019 – to date – We, the charity, participated in a call for to research community for innovative clinical trials that might offer hope to sections of neuroblastoma community, that still suffer poor
outcomes due to the characteristics of their cancer. The response of the research community was carefully considered by JACK and the co-sponsors. The outcome of the evaluation was for our charity to award grants to three clinical trials. [ JACK would not be able to independently resource a trial of the magnitude of those chosen because of the total costs and complexities involved]. The three chosen trials were selected:
- Optimizing Combination Immunotherapy for refractory Neuroblastoma – involving the Stanford University School of Medicine and University College London
- ‘Titan’: Targeting the ALK mutation in Neuroblastoma by involving Lorlatinib – this is novel not only in its use of agent but in being a trial that involves the agencies of SIOPEN and COG
to progress the purposes of the trial. [SIOPEN and COG, respectively are the European and ‘American’ clinical groups that lead the collective medical efforts against Neuroblastoma and
other paediatric cancers]. - Solving Indolent Neuroblastoma: a trial seeking to understand the flags, the markers that might identify the children effected by this resistant form of the cancer – Dr John Marris and
other leading hospitals.
Our charity has committed over £250,000.00 to support these trials and we have provided over £150,000.00 of that sum to date.
We have provided over half a million pounds during the last few years to help children.
I ask you to read the above again but to change the wording slightly.
Wherever you see the word WE change it to YOU.
All of the above was only possible because of YOU.