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….

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….

Solihull 10K

August 11

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.

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
A big thank you to Zuzanna Jakubczak for your wonderful work in creating this video for Spread Your Wings. https://www.zuzannaj.com/

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.

Leo - Life with Angelman Syndrome

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.

During the 1980s advances in genetic medicine made it possible to diagnose increasing numbers of cases and also to start identifying the cause. The name Angelman Syndrome was adopted in 1982.

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.

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.

In establishing the charity, we aim to give hope to other Angelman families, both now through grant awards and increasing opportunities for sport and other physical activities and in the future by funding research into the therapies, treatments and one day a cure for Angelman Syndrome.

Our first year after diagnosis has been difficult. Leo has kept us busy, pushing us to what we thought were our limits. But he has guided us through it, taught us the value of simplicity and made us embrace the small things.

How We Help

How We Help

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.

Ruby
Why Support Us? (Ruby)
Your gift will contribute to our vital work supporting and giving hope to Angelman families.

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.

Help us create a community that is aware, knowledgeable of life with Angelman and other disabilities and accepting.

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.

Raise money by setting yourself a challenge: run, walk, cycle swim, bake for your friends, host an event, do whatever you choose to help raise much needed funds. Get Inspired….
Let us know what you have decided to do and we will help you to promote your challenge and make it successful.
We have no salaried staff and we never thought that we could do this without your help.

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.

We would like to work long-term with a small number of businesses, engaging their employees in our charity work as well as seeking funding.

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.

Your gift will contribute to our vital work supporting and giving hope to Angelman families.

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.

Help us create a community that is aware, knowledgeable of life with Angelman and other disabilities and accepting.

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.

Raise money by setting yourself a challenge: run, walk, cycle swim, bake for your friends, host an event, do whatever you choose to help raise much needed funds. Get Inspired….
Let us know what you have decided to do and we will help you to promote your challenge and make it successful.
We have no salaried staff and we never thought that we could do this without your help.

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.

We would like to work long-term with a small number of businesses, engaging their employees in our charity work as well as seeking funding.

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.

Our Targets for 2024

Our Targets for 2024

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Social media followers

£0

Raised in total

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Angelman families supported

0

further research grant

0

Angelman family events

Who’s Who?

Who’s Who?

Jenny Vainella

Jenny Vainella,

Trustee

Jenny is mother to Leo (born 2021 AS Del+) & his big sister Isabella who is 18 months older. As much as she can, she combines full-time parenting with her passion of teaching dance to children.

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

Alex Vainella,

Trustee

Alex is husband to Jenny and father to Isabella & Leo. With a background in building a business in providing school PE & Sports, he saw the potential for building a charity which could make a difference to other Angelman families in the UK, providing funds for practical support, giving hope by funding research and championing efforts to extend sporting opportunities to children with Angelman and similar disabilities.
clare-hegarty

Clare Hegarty,

Trustee

Clare is friend & colleague to Jenny & Alex for over a decade. When Jenny & Alex made the decision to found Spread Your Wings, they knew they couldn’t be the parents they wanted to be and run the charity they wanted without help.

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 Sitori

Natasha Sotiri,

Trustee

Tasha is a friend of Jenny & Alex’s. She is married to George who has been friends with Alex since childhood. Tasha is a mother of two girls and she has committed to bring them up with an awareness of Angelman syndrome and being accepting and understanding of life with disability.

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.

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.

Corporate social responsibility (CSR) is when businesses get involved with the local community. CSR can take many forms such as:

  • 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

Business Partners

REIM-Logo
carnevale
Nonstop-action-logo

Business Associates

Kyvano logo

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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Contact Us (Everett)

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