UKIST AGM April 21st 2018

UKUST merchandise

The second UKIST annual meeting was held on April 21st 2018. It was an opportunity for the seven trustees to meet up and reflect on our first year as a registered charity and to make plans for 2018-19. We are humbled by the number of people who have walked, run, clambered through mud, baked cakes and held events to support us, and by the amount of money they raised. We now have more than 650 families affected by IS in our support group and 1200 people following our public page. The video that started it all has now been viewed 173,000 times on YouTube! We were thrilled to welcome Dr Andrew Lux as our medical advisor and working with him has produced opportunities to contribute to a textbook on infantile spasms and to collaborate on literature for newly diagnosed families. Dr Lux and our trustee Amy have also been filmed to produce videos to continue our mission to educate the medical profession and the general public about IS. It was massively therapeutic for us to get together again, and we are creating opportunities for more of the UKIST family to meet each other at our fun days this summer. We are so excited to share our plans for the year ahead with you – Belen’s summary of our meeting follows, but more details about our new projects will be published in due course. We would like to sincerely thank each and every person who has contributed in any way to the success of our first year, and we are excited to see what the next year will bring. We remain committed to raising awareness, supporting families and offering hope.
Report from UKIST Annual General Meeting (AGM) Saturday 21st April 2018
Attendees – Amy Melillo, Jenny Rawling, Belen Robbins, Jade Bamber, Samia Sanders, Lisa Martin, Bex Gray-Burns

Annual Budget April 2018-2019
• Trustees agreed spending guidelines by area based on current charity funds
➢ Social media amplification
➢ Website design and project management
➢ Grants 2 x £1000
➢ Research funding
➢ Design – posters/booklet/cards
➢ Print costs
➢ Postage
➢ Accountant fee
➢ Merchandise production
➢ Fun Day Fund
➢ Gifts
➢ Parent Packs for newly diagnosed families(booklet, badge, leaflet, blanket, bear, ball)

• Discussed web designers to build new UKIST website
• Wordpress re-subscription agreed
• Search Engine Optimization discussed and to be part of new website brief
• “About Us” area needs updating
• JB and LM to ask news channels for their clips so they can be uploaded to the site and YouTube channel

Regional Parent Ambassadors
• Plan to appoint 12 Regional Parent Ambassadors to co-ordinate regional activity, manage distribution of literature and recommend local services

Fun Days 2018
• Chester 23rd June
• Reading – 14th August
• Fund agreed for current dates and fund ring-fenced for future events

Grant Scheme
• Announcement to follow with details of how to apply
• Families in need will be able to apply for funds for children impacted by Infantile Spasms
• Cases will be assessed by board of Trustees – a total fund of £1000 will be made available at two periods in 2018 – applications can be made for any amount but UKIST will grant a total of £2000 in 2018

Research Funding
• Funding agreed to support research into Infantile Spasms via CURE
• Possibility of sponsoring a PhD student discussed but limited due to cost of £60k a year for at least 3 years

Awareness within Medical Profession
• Outline proposal of a chapter for Infantile Spasms textbook submitted to and approved by Dr Lux
• Second draft of Quarriers re-write submitted to Dr Lux
• Inclusion in British Medical Journal
• Self-published E- book – by families for families
• Building of training Powerpoint to be delivered in medical environments
• Drive to share our videos amongst medical profession
• Charity networking – especially amongst conditions that may cause children to be prone to IS – Sarah Brown is taking charge of this for this year.

All other business
• Clare Garvey unanimously elected as a Trustee
• Bryn Bear challenge medal – official launch 2nd July
• Logistics of call line discussed – project for future discussion
• Accountant appointment to help AM with end of year accounts for the Charity Commission.
• Possibility of equipment lending library
• Translation of current literature
• Merchandise Production and development

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