We need your help…

Ladies and Gentlemen, we need you.

Today we are launching a fundraising campaign, supported by Solving Kids Cancer.   SKC are the wonderful charity who provide support to families affected by Neuroblastoma.

The aim of this campaign is to secure the funds necessary to ensure that whatever lies ahead for Jake, we are able to access the best possible treatment options, wherever they may be found across the globe.   We are eternally thankful for the incredible work of the NHS, quite frankly without them Jake wouldn’t be here today.  But we know that Neuroblastoma is a particularly horrid disease.  Approximately 40 to 50% of patients who reach remission will relapse, and outcomes for relapsed Neuroblastoma are incredibly poor.

We are raising money with the hope of accessing maintenance therapies when Jake reaches remission which could reduce his chance of relapse.  In particular we are looking at the Bivalent vaccine trial at Memorial Sloan Kettering hospital in New York.  But we are acutely aware that plans can change, and it may be that the money could be needed for alternative options if he were to relapse before reaching the end of front line treatment with the NHS.  For this reason we are not putting a specific target on the campaign, as we cannot say for certain at this point what we will need to spend the money on, but we know that these options can run into six figures and beyond.

We have known since very early on in Jake’s treatment plan that this was something we would likely need to do at some point.  We have watched many other lovely families we know raise funds, and several of those families are currently accessing treatment abroad.   Fundraising has been on our minds for a very long time but it has taken us until now to feel ready. Whilst it is true that we are in a very different headspace almost 18 months post diagnosis, it still feels pretty terrifying to open ourselves up like this and to take our story into a wider public domain.  But as parents, we need to know that we have done everything possible for our child, and there is absolutely no way we could afford these treatment options without reaching out to the incredible communities which we are so fortunate to have around us.

So what are we asking you to do?

• Donate.  If you feel you are able, then anything you could contribute would be so gratefully received.   Donations can be made directly to SKC, who are a registered charity, or through our JustGiving page:

http://solvingkidscancer.org.uk/jake-cohen

https://www.justgiving.com/campaign/jakecohen

• Follow us.  We have set up dedicated Facebook and Twitter pages to manage the campaign and to keep people updated.  Please join them and invite others to do the same.
• Share our story.  Talk to people about us.  Please share this blog and/or the Facebook and Twitter pages, if possible with an explanation about how you know us, what Jake’s story means to you and a direct link to our donation pages.  We have amazing circles around us but in order to reach these targets we will need to widen them.
• Fundraise.  If you have any ideas for ways to support the campaign, please do let us know.  You can organise your own events and link them directly to our JustGiving page.  The wonderful fundraising team at SKC are on hand to help with this, and we have posters and other supporting materials ready to go.
• Contacts.  If you have any contacts that you feel may be beneficial to our campaign, we would love to hear from you.

SKC will hold all donations (including those made via JustGiving) in a designated fund which is set aside for Jake.  They will keep the money in his fund for five years once he reaches remission.  If for any reason we do not use the money, it will be transferred into SKC’s general funds to support research and clinical trials aiming to cure Neuroblastoma.  If it weren’t for the monumental campaigning efforts of SKC, we would have been asking for your assistance much sooner, as they are largely responsible for getting the immunotherapy which Jake is currently receiving approved on the NHS.  If and when the time comes for us to access treatment abroad, SKC will also provide us with dedicated family support, liaising with the hospitals on our behalf, arranging treatment, travel and accommodation as well as any scans which may be needed back in the UK which are outside of the NHS.

A quick thank you to Devon and Blake from Blake Ezra Photography for the wonderful pictures which we are using for the campaign.

And the most enormous thank you in advance to everyone reading this.  This is a situation that you never imagine you will find yourself in, but we are here, we need your help, and we will be forever grateful to you all.

Much love, Hannah and Adam xxxx