Upcoming Events
We will be running many varied events during the year and will take every opportunity to raise awareness and funds for SYW.
We are planning on doing our first launch event in the coming months and it will be in Central London, watch this space….
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What’s New?
Breaking news, events and the latest findings on Angelman Syndrome from our Instagram account
Breaking news, events and the latest findings on Angelman Syndrome from our Instagram account.
What is Angelman Syndrome?
What is Angelman Syndrome?
Angelman Syndrome (AS) is a rare neurogenetic condition affecting around 1 in 15,000 people, about 500,000 in the world.
It affects the nervous system causing severe physical and learning disabilities, little or no speech and issues with movement and balance.
A person with Angelman will have near normal life expectancy, but they will require support throughout their life.
AS is caused by one of several different types of disruptions of a region of Chromosome 15, all involving a single gene, UBE3A.
AS or Angelman Syndrome, was given its name by a British paediatrician, Harry Angelman. He first identified it in 1965. Initially, little was known of the disorder and few other cases were identified.
Most children with Angelman will be able to communicate using gestures, signs or other systems and may have a few words. They have difficulty walking because of poor balance and co-ordination. Seizures, feeding difficulties and poor sleep patterns are all a common feature of Angelman. The most endearing feature though, is their frequent smiling and laughing.
Life with Angelman Syndrome
Life with Angelman Syndrome
Our Story
December 9th 2021 is a day we will never forget.
It’s the day we got the phone call from the doctor explaining the genetic test results had come back. The diagnosis… Angelman Syndrome!
The phone call lasted 2 minutes. We froze. We cried. We Googled and then cried a whole lot more.
Then we told our family and friends. Their support was overwhelming but everyone’s response was the same: “What is Angelman Syndrome?”
December 9th 2021 is a day we will never forget.
It’s the day we got the phone call from the doctor explaining the genetic test results had come back. The diagnosis… Angelman Syndrome!
The phone call lasted 2 minutes. We froze. We cried. We Googled and then cried a whole lot more.
Then we told our family and friends. Their support was overwhelming but everyone’s response was the same: “What is Angelman Syndrome?”
A big thank you to Zuzanna Jakubczak for your wonderful work in creating this video for Spread Your Wings. www.zuzannaj.com
Why Spread Your Wings Exists
Why Spread Your Wings Exists
In the months following the diagnosis, we started meeting more and more medical professionals: doctors, nurses, physios… to which very few had heard of it, or if they had they didn’t know the full extent of it.
How could this be? We began to feel like a broken record, constantly repeating ourselves and reciting what Google had told us. It’s for that reason we knew we had to do something… Spread Your Wings was initially created to share Leo’s journey, detailing his and our Life with Angelman Syndrome.
How We Help
How We Help
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Financial SupportAwarding family grants, supporting a wide range of needs. |
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Funding researchWe help fund some the most important research initiatives. |
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Community EventsOrganising events, helping connect other Angelman families. |
Video by Zuzanna Jakubczak for Spread Your Wings. www.zuzannaj.com
We are here to help. Over the years, we have awarded hundreds of family grants, supporting a wide range of individual needs.
If you would like to apply for a family grant, please become a member by clicking the link below. We will be in touch when the next application round opens.
To date, we have funded several key projects, including a £60,000 donation in 2023 via FAST UK to the Oxford Natural History Study, one of the most important research initiatives in the UK.
We funded £50,000 to the Data Federation in Angelman syndrome, an innovative model to accelerate clinical development led by Professor Laurent Servais at the Department of Paediatrics, University of Oxford.
We remain committed to supporting these projects and directing funds to research that makes a real difference. If you would like to discuss funding opportunities, please get in touch with us.
We are committed to creating inclusive events where individuals with Angelman syndrome and their whole families, including siblings can meet
others, share experiences, and form lasting friendships.
Our current calendar of events includes Winter Wonderland, Alton Towers International Angelman Day party and the Summer party hosted by our partner Spread a Smile.
To hear about upcoming events, please make sure you are registered as a member. If you have an idea for a future event or would like to get involved, we would love to hear from you.
Support for newly diagnosed Angelman families
If you are a newly diagnosed parent, please know that there is lots of help out there, some of which you will be ready to access now and some of which, you will come to in time. Give yourself that time.
As Angelman parents, the best support we have received has been from the Angelman community of parents.
When you are ready, we will be in touch.
The early days after diagnosis can feel like a very lonely place, but together we can change that.
Just get in touch.
Why Support Us?
Why Support Us?
We are a small charity run exclusively by volunteers. We don’t pay any salaries and we keep our running costs to an absolute minimum.
This means that your donations go to help the people they were intended for. Being small means that every donation and grant awarded is very personal. We will award money quickly after it comes to us and by reacting so quickly to situations, we are making a tangible difference in the Angelman world.
The average extra costs of raising a disabled child in a family is estimated to be £581 a month ( Scope’s Disability Price Tag report in 2019). Extra costs include heating, insurance, equipment and therapies.
The current cost of living crisis has exacerbated this and as many as 9 in 10 families raising a child with disabilities are struggling. Where society and the government isn’t set up to protect everyone who needs it, these families are overlooked and charities like ours must fill that gap, which is why we need your support.
We are registered with the FUNDRAISING REGULATOR, which means that you can have confidence that we will fundraise in a way that is legal, honest, open and respectful.
You can set up a regular donation monthly or annually or simply give a one-off donation. We are so grateful for every gift whether large or small, we promise to put all of them to good use. Click below to make a difference.
We know that not everyone can afford to make a donation, but everyone can follow us and share our posts on social media. Everyone can talk about AS to their family and friends and if you have access to a larger audience, and you would like to support us, click below.
There are all kinds of skills needed, not least the willingness to get on with what needs to be done, as well as a simple attitude to help out. If you would like to volunteer with us, please click the button below.
Supporting a charity like ours makes good business sense as both employees and customers care about your support of causes like ours. If you would like to talk to Spread Your Wings about a partnership, please click below.
You can set up a regular donation monthly or annually or simply give a one-off donation. We are so grateful for every gift whether large or small, we promise to put all of them to good use. Click below to make a difference.
We know that not everyone can afford to make a donation, but everyone can follow us and share our posts on social media. Everyone can talk about AS to their family and friends and if you have access to a larger audience, and you would like to support us, click below.
There are all kinds of skills needed, not least the willingness to get on with what needs to be done, as well as a simple attitude to help out. If you would like to volunteer with us, please click the button below.
Supporting a charity like ours makes good business sense as both employees and customers care about your support of causes like ours. If you would like to talk to Spread Your Wings about a partnership, please click below.
Who’s Who?
Who’s Who?
Jenny Vainella
Trustee
She started the Instagram account for Spread your Wings soon after Leo’s diagnosis to share with family, friends and anyone who was interested in what life was like living with Angelman syndrome. This has evolved into the charity in which she is involved in every aspect.
Alex Vainella
Trustee
Clare Hegarty
Trustee
Clare is married to Mick, who has already been drafted in for support and mother to 3 grown-up sons, so knows the challenge of combining parenting and business. Clare leads on governance of the charity.
Natasha Sotiri
Trustee
Tasha is a chartered surveyor in her daily life and has put this experience to great use within the charity taking on the role of managing business partnerships and sponsorships. Tasha was appointed as a trustee in December 2023.
Roberto Barzanti
Treasurer
Adrian Sandu
Grants Administrator
Mick Hegarty
Innovation & Technology Lead
Loretta Orsi-Barzanti
Legal & Compliance Officer
Nicole Fernandes
Merchandise Coordinator
Aimee Crowther
Administration Officer
Angela Soave
Gala & Events Manager
Business Partnerships and Sponsorships
Business Partnerships and Sponsorships
We welcome companies of all sizes, from small start-ups to large corporates, to work with us to help transform the lives of children living with Angelman syndrome and similar conditions.
Our dynamic and friendly team will work with you to create a successful partnership at the level of commitment that works for you.
Spread Your Wings is continuously thankful to our business partners, business associates and event sponsors, who support our charity with much needed funds, expertise and volunteers. We have benefited from companies kindly sponsoring our Launch Gala Event in December 2023, organising corporate fundraising events and from companies’ commitments to donating a percentage of their annual sales proceeds to our charity.
- Choosing us as your charity of the year
- Increasing awareness and promoting our charity
- Organising your own events and fundraising
- Sponsoring our main events
- Making regular or a one-off donation
- Encouraging staff to volunteer with us
- We are a dynamic, proactive and forward-thinking charity that is highly motivated to make an important and much needed change – quickly
- We are a small charity and are hugely grateful for all donations no matter how big or small
- We ensure that all money raised is spent directly on achieving our objectives
- We have no salaried staff and exist solely due to the time and efforts of unpaid volunteers
- Promote a positive workplace culture and enhance staff wellbeing
- Deliver on your CSR objectives
- Reputational benefits of positive PR
- Drive business and profitability
- Share your skills and make a difference
Become a Business Partner or Associate
If your company is interested in becoming one of our business partners, business associates or would like more information on how to get involved, then please do get in touch.
Corporate Match funding schemes
Many companies offer match funding either through their own schemes or through third parties like Benevity. We are already benefitting from these, but please contact us if we can support you in accessing these funding schemes.
Raise Awareness
Raise Awareness
Help us raise awareness of Life with Angelman syndrome by wearing our unique clothing or using our unique products. We have hoodies, hats, T-shirts, tote bags, water bottles and are adding more items all the time.
Contact Us
Contact Us
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