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- Chair Person’s Introduction
- School Resource
- Agenesis of the Corpus Callosum: Information for families affected by Disorders of the Corpus Callosum
- Aicardi Syndrome
- Fundraising
- Merchandise
- Sunbow Kids
- The Bridge
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| Chair Person’s Introduction |
| As I am writing this, we are going through yet another lockdown. Social media has taken over our lives more than any other time before. Behind the scenes, Corpal’s team of trustees have had several on-line meetings so that we continue our work, always aiming to get more involved with our community, pursue new projects and progress with our existing ones. |
| We have achieved a great first link with Foetal Medicine Units around the country. You can refer to the list within this Newsletter, and while it is an ever-expanding record, this is the first time Corpal is infiltrating the health industry at this level, to increase awareness and open channels of communication. But we have not stopped there! We are contacting Neuro-disability centres and consultants and, although we cannot meet anyone face to face, we have mailed, posted, and had telephone chats with relevant clinical professionals. I would like to say a big thank you to a close member from within our community, Helen Christodoulou, who has stepped forward and will now help us to take this project even further. |
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| Needless to say, Corpal’s information booklet on ACC/DCC has proven an excellent resource to all the professionals and units. We have had excellent reviews and a great deal of interest from within the UK, Ireland, the U.S (the charity NoDCC), and Australia (the charity AusDOCC). |
| Moving onwards, the next highlight will be our School Project. Our team is creating an On-Line resource tool for all educators. This is meant to be the first of its kind, giving ideas and guidance to teachers as well as confidence and creative suggestions when dealing with and teaching our children. We very much appreciate this will be a work-in-progress for some time but having the backbone of it out there and available soon into the New Year will be a huge step forward. We would love your input! Get involved and tell us about your children’s experiences thus far at school, whatever the school, whatever the age. What has worked very well, what could have been done better, ask us questions and share your suggestions! |
| The Corpal team have missed seeing all our members and attendees at our family gatherings. We missed getting to know your children and chatting to you face-to-face. We hope the COVID-19 pandemic will soon be over and our lives will begin to return to normal. I would like to take this opportunity to wish you all a happy and healthy holiday season. Despite how unusual it will be this year, let’s all still enjoy it, enjoy our time with our children, our loved ones near or far, and praise yourselves for how greatly you pulled through, what a rock you have been for your children during such a difficult, challenging and unusual year! |
| May the New Year bring us all the hope we are longing for. Let us stand together and aim for 2021 to be the year that will turn things around, for the better and for the healthier. |
| Happy Holidays and a blessed Happy New Year 2021! |
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| Disclaimer: Corpal is run by volunteers affected by Agenesis of the Corpus Callosum or Aicardi Syndrome. They are not medically trained and therefore advise you to seek medical advice from your GP or medical professional if you need medical advice. |
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| School Resource – Chair person’s note |
| This is an extremely exciting new project on which Corpal is embarking. I have spoken to a number of parents and very soon it became clear how stressful it is trying to explain to teachers, teacher assistants and support workers, not only the condition itself but also possible ideas on how to approach education and fun when it comes to ACC/DCC. In addition, core members of Corpal’s team have shared these similar thoughts repeatedly. All of that put together has inspired me to want to achieve this project. My own son, now 3 years old, will be going to school next year and he is my other huge motivation to get this platform up and running. |
| We would like to get as many of you as possible on board for this unique initiative. This project will mean a lot to many of you and us. The entire team of Corpal wants to make the best effort possible. |
| We would like and hope you will reach out to us via our official email (corpal@hotmail.co.uk) and tell us more of your experiences, what worked well or not so well, what you thought was creative or a good idea, what difficulties you and your little one (or big one) faced and what suggestions you may have. |
| This on-line platform will be an immensely useful tool for all educators, through which they will be better guided and gain ideas and confidence as well as information on how to engage with our children. |
| On behalf of all of us at Corpal, I want to take this opportunity to thank you in advance for your time in participating in this. I know how busy we all are, and we greatly appreciate every bit of information, message, email you send us. |
| Please reach out and ask questions or tell us your thoughts. |
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| Agenesis of the Corpus Callosum: Information for families affected by Disorders of the Corpus Callosum |
| Rhonda Booth, PhD. February 2020. |
| “This information booklet aims to answer some of the many questions families naturally ask when a disorder of the corpus callosum is detected. Written in consultation with medical professionals and research scientists, it brings together what is currently known about the condition, how it might be caused, what the possible range of outcomes will be, and what support is available. Although primarily written for parents, the booklet will be of interest to anyone who learns that they have a disorder of the corpus callosum. Clinicians and educators will also find it a valuable resource to gain a better understanding of this rare brain condition.” |
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| We received the finished booklet at the end of June. Thank you so much to Dr Rhonda Booth for her precious time and hard work to write and complete this book. This is a unique booklet, information on ACC all in one place and a useful resource to have, especially when your child or yourself have been newly diagnosed. If you are a registered member of Corpal you should have received your complimentary copy by now, as we have informed you all by email. If for some reason you have not, please contact us so we check the situation. The booklet is also available to purchase through our website for £6.50 via Paypal, which includes postage and packing. Many Fetal Medicine Units, Paediatric Neurologists have now received this booklet at their requests, plus recently a large shipment has been sent to Ausdocc, the group equivalent to Corpal in Australia. We are still working hard to raise awareness around the UK and continuously contacting further departments relevant to needing to know more about this condition. If you would like your medical professional to receive one (if not already) please email their details,/contact, position and address so we can forward a copy on to them. |
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| Aicardi syndrome awareness day |
| The 8th of November was Aicardi syndrome awareness day. This was only the second time it has been marked, having become an official awareness day in 2019. |
| Aicardi syndrome was named after the renowned childhood neurologist, Jean Aicardi who first identified the syndrome back in 1965. Aicardi was passionate about understanding and treating epilepsy in children. |
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| The classic traits used to diagnose Aicardi syndrome are chorioretinal lacunae (lesions on the retina), infantile spasms (a type of seizure) and, of course, agenesis of the corpus callosum. |
| Aicardi syndrome is an incredibly rare condition, thought to affect roughly 4000 people worldwide, and is predominantly found in girls. A very small number of boys have the condition. |
| Though it was identified back in the 1960s, to this day there is no definitive answer for what is the cause. It is thought that it is most likely a first-time mutation on one of the X chromosomes (thus why it is so rare in boys) and that it is not inherited from the mother or father. This also means that it does not run in families. |
| Those who have Aicardi syndrome have a wide spectrum of abilities and disabilities. There are those who are only mildly affected; however, the majority of individuals require significant support throughout their lives. |
| Aicardi syndrome awareness day is important to Aicardi families as it is an opportunity to expand people’s knowledge of this very rare condition and also a chance to celebrate the wonderful, unique and resilient individuals who have this diagnosis. |
| At Corpal our Aicardi syndrome contact is looking for stories and experiences from other Aicardi families that may help those who are early on their diagnosis journey. |
| As it is such a rare condition, often Doctors encourage families to turn to internet search engines to find out more about the diagnosis. We feel this is unfair advice as families are often faced with cold, hard and heartbreaking facts rather than compassionate and often positive real-life stories. |
| We are currently compiling a leaflet that will be sent out to childhood neurologists which they can pass on to families after diagnosis to give them hope and comfort at a very difficult time. |
| If you would like to help, it would be wonderful to hear from you. |
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| Christmas Day Race – Santa’s Village, Lapland – Virtual Balloon Race. |
| As the fundraising opportunities have lessened due to COVID 19 this year we are looking at alternative ways of fundraising. We thought you may like to purchase a balloon to help a small charity like ours. As you are aware, Corpal is a not for profit support group and charity run by parents, families and carers of children and adults who have ACC or Aicardi syndrome. Any funds raised will go towards developing resources and future events! |
| Our fundraising target is: £1000 |
| All you need to do is follow this link https://ecoracing.co/user/page/989 and purchase a balloon for £3.00 you can customise & personalise this and then track how it goes!! |
| Why not get one for each child or family member and have some fun competing with each other? |
| The race starts on Christmas Day and will end after 7 days. Other charities and causes will be racing but you could be in with a chance of winning a prize – |
- £500 Cash
- Apple iPad
- 10 lucky winners of £10 Book Tokens
| Please do spread the word if you can. Thankyou. Here are the details of the race: |
| We would to like offer our sincere gratitude for the generous donations that Corpal has received over the past few months from the following contributors: |
- Stock C of E Primary School. – £1120
- Anonymous donation of – £510.00
- Yogesh Nakarja – £100.00
- Easy Fundraising – £15.08
- Amazon Smile – £28.43
- Via JustGiving: Since our last newsletter we have various donations from members and various sources, mounting up to over £ 3,000
| A great big thank you to everyone! |
| Would anyone like to take part in the following event which was cancelled this year, but our entry places carried over for next year. |
| You can find more details at Home – Vitality London 10,000 | Vitality London 10,000 entries are limited and will be allocated on a first come first served basis. We only ask that your commitment to Corpal will be to raise a minimum of £100 through fundraising. Raising awareness of the condition is also important, T shirts and Flags available for each entry who runs for Corpal. |
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| Disclaimer: Corpal is run by volunteers affected by Agenesis of the Corpus Callosum or Aicardi Syndrome. They are not medically trained and therefore advise you to seek medical advice from your GP or medical professional if you need medical advice. |
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| Sunflower lanyards
We are now an official Sunflower Lanyard distributor and for small donation to Corpalwe can offer the lanyard with badge explaining that you are exempt from wearing a face mask. (This is not only for Covid 19 but this can be worn for travelling through airports etc) |
| Corpal are offering the following items in exchange for a small donation: |
- Lanyards with ID Cards
- Ribbon Pins
- Adult Silicon wrist bands
- Fabric wristbands
- ‘Can I help you badges’
- Car stickers
- Window Sticker
| We only have limited supplies so if you would like one of the above, please email info@corpal.org.uk to make sure we have what you need in stock before making payment. |
| The payment will need to be through PayPal corpal@hotmail.co.uk. However, if you do not have a PayPal account, please let us know as we can discuss a further option. |
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| Please remember that we have several books available for purchase via our website that can help children understand ACC. |
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| Neens and Ru – £6.50 |
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| ACC Kids Like Me – £7 |
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| ACC and Me – £10 |
| All purchases are plus postage and packaging. If you are from overseas or want bulk copies, please contact us for postage costs at info@corpal.org.uk |
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Christmas family Zoom meet-up
This year we will be holding a virtual family meet-up! We hope that you can join us: |
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| Sunbow Kids reached out to tell us about adapted their children’s clothing: “Do you know here at Sunbow kids I can bespoke design and handmake adapted clothing for additional needs? Shown are 2 garments I made for a tube fed little one, please feel free to inbox any requirements and I’ll do my best to design garments to your requirements” |
| Check them out on Facebook and use code CHESTER10 for a discount. |
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| Disclaimer: Corpal is run by volunteers affected by Agenesis of the Corpus Callosum or Aicardi Syndrome. They are not medically trained and therefore advise you to seek medical advice from your GP or medical professional if you need medical advice. |
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