To all our supporters,
I am sure by now you are preparing for Christmas, and if you are like me still have so much to do, so I am sorry to add one more thing to your list, but this is very important.
Today a very important support group that I co-founded have launched their first Crowdfunder.
https://www.crowdfunder.co.uk/p/medcansupport
MedCan Support is a not-for-profit organisation run for parents by parents who understand everything that it is to have a child with drug resistant epilepsy. Parents just like me.
It has been four years since the NHS was given permission by the Government to allow the prescription of medical cannabis products to children with refractory epilepsy. These children can suffer sometimes hundreds of seizures a day and it is rare that they have a quality of life which any of us would accept. Sadly, the NHS is not supporting the prescription of these products and the only access that is available is private. I have many conversations with parents who are desperate to use medical cannabis products with their children, but cost prevents them, they can't face fundraising, how cruel is this to leave these families like this.
Worse still we have more and more families reporting that they are going to the illegal market to buy cannabis as they cannot get clinical support, this is something we must not stand by and let happen. Vulnerable families being made more so by lack of access to safe, prescribed medicines.
MedCan Support is run by a small group of wonderful volunteers, but for us to grow and offer more support to our families we need to raise funds to pay for grants for families to access mental health support, short breaks and equipment, often things that should be provided for them but sadly are not consistently or at all. We also wish to employ a person to help set up data collection trials and education for our group and to help grow the organisation to the next level.
We have an independent financial board who will take charge of allocating grants to families.
So, between wrapping the presents and decorating your tree, I am asking you to please visit MedCan Support's crowdfund page, link above, and give whatever you can. I know times are tough for all right now, but many families who have very poorly children really need your help.
I am lucky, so lucky, my son Alfie is well, 2 and a half years seizure free, because he has an NHS funded prescription for whole plant cannabis oil. I will continue to use my voice to help others like me, families like mine, who aren't so lucky. You too can also help them. We need your help to help them.
Merry Christmas and Happy New Year.
With love Hannah, Drew, Alfie and Annie xx