The Bloom Syndrome Association

On Saturday 1st April 2023, I will be attempting to walk 80 kilometers in 24 hours, along the beautiful Shropshire Way. A personal challenge yes, but I also think such an endeavour warrants some sponsorship for a good cause, and so I would like to raise money for a very special but lesser-known charity – The Bloom Syndrome Association.

Bloom Syndrome is so rare (I suspect many of you haven’t heard of it, I hadn’t either) that there are currently fewer than 300 people worldwide with a diagnosis. However, one of those people is the youngest daughter of one of my very best friends.

Josie is 7, she is a mini whirlwind, quick witted, can’t say no to a crisp, loves everything in miniature (which is just perfect) and takes life and its challenges in her stride. Living with Bloom Syndrome involves health problems including severe sun sensitivity and immune system deficiencies which require regular treatment, but more crucially, people with Bloom are at a greatly increased risk of developing cancer at an early age. This is often much harder to treat effectively. The Bloom Syndrome Association is one of very few to initiate research into the condition, which will hopefully one day provide scientific understanding and options for treatment to enable those with Bloom Syndrome to live a longer, healthier life.

The Bloom Syndrome Association also provides a community of support and shared experience which has clearly been massively important to our friends since Josie’s diagnosis. The family have met and continue to be in touch with other families living with Bloom Syndrome. As I have seen first-hand how much this means to people so close to me, I’d like nothing more than to help out in any small way I can.

So please, if you feel you can sponsor me, today, or tomorrow, or on payday, or next month...I shall be forever grateful, and I know many others will be too.

Hannah x