FUNDRAISING EVENTS 2019

We are delighted that we have some very active members who would like to raise funds for Corpal in a way of taking part in events as follows.

January 2019

5K Run  in Crystal Palace Park on the 13 January

Lisa Minney (member) will be running this event to benefit Corpal. Lisa's daughter Minnie who has Acc will also be taking part.  https://www.justgiving.com/fundraising/lisa-sandison

Lisa's friend Lee with her daughter Autumn will also be taking part to raise funds for Corpal https://www.justgiving.com/fundraising/lee-harden4

Please support them by visiting their Just Giving page to find out more, how they have become involved with Corpal.

April 2019

Virgin London Marathon

Leah Ozdemli (member) will be running in the London Marathon this year on the 28th April, her just giving page is  

https://www.justgiving.com/fundraising/leah-ozdemli   Please read her page, why Leah has decided to take on this massive task.

May 2019

Vitality London 10,000 (10k run)

We have two places available for anyone who would like to take part in this event to help raise funds for Corpal.

Please contact us at This email address is being protected from spambots. You need JavaScript enabled to view it. for more information or interested in taking a place. The places will be paid for by Corpal, so all we would ask is for you to commit in raising a minimum of £500 per entry.

August 2019

Wales End to End Cycle Challenge -

Chris Cronin (member) will taking part in this event to benefit Corpal. The event is taking place 15th-18th August, this has been classed an a high challenge, so thank you Chris once again for your efforts to raise money. Just Giving page details to follow.

A big thank you to all those above in advance of the events for setting themselves targets to get fit for the events.

 

 

 

 

 

 

CORPAL PROPOSES New Agenda for Conference 2020

The Trustees of Corpal have been discussing for some time, how to make our annual event - which we traditionally hold alongside the formal AGM in May – bigger and better for families. For various reasons, only a relatively small number of families attend the AGM events (around 28 each year) and some who used to attend, have stopped attending. }

Some thoughts on why this is the case include:

-          Numbers are biased towards newly diagnosed families

-          The format and location of the event – between 9am and 4pm on a Saturday – can make it difficult for those who live a distance from the regular venue at Heathrow to attend

-          It can be a challenge to find a range of specialists in the field to present and stay on for more informal discussions.

-          There is limited time for families to network and find others experiencing similar issues

-          We are not appealing to ‘high functioning’ children and adults

-          Families and individuals are getting what they need from social media connections and may see less value in meeting face-to-face. In seeking to address all or most of these, the issues we face are:

  • Finding a suitable alternative venue(s) to cater for more than our usual 60 or so group size
  • Arranging a varied cohort of speakers
  • Providing more time for social interaction between families
  • Moving the event around the UK subject to numbers in any given area
  • Funding the event
  • Establishing a regular [or reliable] group of volunteers ?
  • Making this event every two years?

In order to action these points, we need to YOUR HELP/SUPPORT to secure the following to make this happen:

A two-day event venue with accommodation - (We have a few in mind, but suggestions welome)

  • A varied group of experts and speakers
  • Commitment from enough families to have a group size of around 200
  • Commitment from families to pay a reasonable amount towards the venue, catering and children’s entertainment costs
  • Volunteers

The Trustees believe we can attract world-leading researchers on a range of topics – including the pivotal area of genetics research – to present and be available for questions. 

It is the commitment and support from families that we now need. We would love to hear your thoughts on this. Please share your views with us by:

  • Email to This email address is being protected from spambots. You need JavaScript enabled to view it.
  • Corpal’s Facebook group page

Just to remind you, what we want to know is:

Do you like the idea of a two-day conference as proposed? 

Are you and your family likely to attend?

  • How much are you prepared to pay as a family for the event itself, excluding travel and accommodation costs? (Some meals will be provided).

Please also remember that international speakers may require their travel costs paid for unless they are already attending a UK or European event at that time.  Corpal is a not-for-profit support group and charity and we are not NHS funded. We are unable to reclaim VAT on purchases.

Please send us your opinion. We want to make this work for our members and all those affected by Acc and Aicardi Syndrome.

To be able to run a conference in  2020, we are counting on replies etc by the 28th February 2019 to make a decision if we can go forward. We would love to hear from you whether for or against.

Any suggestions welcome.

This email address is being protected from spambots. You need JavaScript enabled to view it.

 

NEWSLETTER October 2018

Dear all,

It’s that time once again and there is a lot to tell you about! We have our usual family stories, which are always lovely to read about how our little ACCer’s are getting on.

We also have a report by our treasurer, Tom Deevy, who back in the summer attended the NODCC conference, our sister charity in America, to see how they organise and produce a twoyearly

conference for their members. In the future we are hoping to change our AGM’s event – you can read more about this over the next few pages! Exciting times!!!

Read More

 

CARDIFF EPIC 10K TRAIL -Thank you Chris and Andrew

A BIG THANK YOU to Chris Cronin and Andrew Homer for taking part in the Epic 10k run around Cardiff on 8th July this year.

Corpal is forever grateful for their hard work and donations from their friends and family. I understand that they had a great day and completed the course.

They have raised £331.00 between them so far, if anyone else would like to support Chris and Andrew,  its never too late, just follow the link below.

https://www.justgiving.com/fundraising/epic10kforcorpalepic10kforcorpal

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PLEASE HELP US RAISE AWARENESS OF DISORDERS OF THE CORPUS CALLSOUM

Even though 2nd July was the official Awareness day for Disorders of the Corpus Callosum. We need to keep raising awareness throughout the year. If you would like to help in some way by holding an event or handing out leaflets, please contact This email address is being protected from spambots. You need JavaScript enabled to view it. for more information on how we can help you to raise and keep the awareness going.

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