HOTEL RAPHAEL: fundraiser & book launch
Rachael Boast is raising money for Ichthyosis Support Group
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What am I doing?
I am marking the publication of my new book of poems, Hotel Raphael, by creating a fundraiser for the Ichthyosis Support Group (ISG) which lasts the month of May. You can make a donation at any time during the month. May also happens to be I AM (Ichthyosis Awareness Month).
The virtual launch event for Hotel Raphael will take place on THURSDAY 27TH MAY, starting at 7.30pm. The event is in association with Picador and the ISG, and Mandy Aldwin-Easton, a trustee from the ISG, will be present to say a few words about the important work they do. To register, for the event, visit:
https://www.crowdcast.io/e/hotel-raphael-by-rachael/register
I was born with Congenital Ichthyosiform Erythroderma, a rare and chronic form of Ichthyosis, and the ISG have been an indispensable source of advice and support. The work they do is heroic and has made an enormous difference to people living with the condition.
From their website (https://www.ichthyosis.org.uk) :
What is Ichthyosis?
"Ichthyosis is a lifelong genetic scaling skin condition for which there is currently no cure. There are many types, varying in severity, but in the worst cases it can be fatal. Ichthyosis can be described as a condition predominantly affecting the skin, but its effect on individuals is not only physical but also psychological. The impact on daily living can be tremendous. The rigid, but so important routines are carried out to prevent infection, and are sometimes excruciatingly painful. Living in a world where society perceives you as being ‘different’ has a huge impact on personal development and self-esteem."
What is the ISG?
"The Ichthyosis Support Group (ISG) was set up by people affected in some way by ichthyosis either as a sufferer themselves or carer of someone who suffers with the condition itself. Currently the group exists through fundraising and voluntary work to enable the group to continue. The ISG helps all those affected in some way by the condition providing support to individuals and families as well as less knowledgeable professionals. The ISG is supported by a Medical Advisory Board consisting of relevant experts in the field of Ichthyosis."
Your Donation
"As a registered charity any donation you wish to pledge will be gratefully received and will benefit the support group and its ability to help all the people who are affected by this family of conditions. The ISG is run almost entirely by volunteers and receives no Government funding but relies totally on the generosity of individuals, companies and grants for its income. Your donation will contribute to the support offered by the ISG and help to fund research into these extremely rare conditions."
Please read more at: www.ichthyosis.org.uk
Hotel Raphael is published by Picador on May 13th. To order your copy, visit:
https://www.panmacmillan.com/authors/rachael-boast/hotel-raphael/9781529037548
Thank you for your support!
Rachael