Make a Real Difference

Whether you are taking on a personal challenge, making a donation, or offering your time, your support helps us ensure no family faces PDH alone. Together, we can push for better care, fund vital research, and bring hope to those who need it most.

We are a small foundation built on lived experience and genuine care. When you get involved, you are not just funding a charity – you are actively changing lives.

Every pound raised and every hour volunteered goes directly toward providing immediate emotional support for newly diagnosed families, driving crucial PDH research forward, and hosting the events that keep our community connected.

Ways to Support

You might join our private Facebook group with other parents of children with PDH, meet families in person at a weekend gathering, ask questions in an online forum, find a mentor who has walked this road longer, or simply scroll and listen if you're not ready to speak yet. There is no one way to be part of this.

Fundraise for us

Run a 10k, host a coffee morning, or get creative with your own unique event. Whatever challenge you choose to take on, we will be right behind you cheering you on and supporting your efforts every step of the way.

Make a donation

A one-off contribution or a regular monthly gift provides a direct lifeline to our families. Your donations allow us to keep our safe spaces open, produce helpful resources, and plan for a future with better treatments.

Volunteer and advocate

Your voice and your time are incredibly valuable. Help us raise awareness of PDH in your local area, lend a hand at our community gatherings, or share your own lived experience to help support others.

Help fundraise with us

Kelly’s 10-Marathon Challenge

Celebrating ten years of the Freya Foundation, this challenge paid tribute to the efforts that stands for everything we are today.

Starting on

21/9/24

£5000 goal

Fundraise For Us

Have an idea? Whether it’s a bake sale or a bungee jump, we’ll support you every step of the way with a Puffin Pack and t-shirt.

Zoe’s London Marathon 2026

Zoe is lacing up her running shoes to take on 26.2 miles through the capital, raising vital awarenes

Starting on

26/4/26

£2000 goal

Got questions for us?

We are a small, family-led foundation, which means your donation goes directly toward making a tangible difference, not into heavy administrative costs. Your funds help us provide immediate personal support for newly diagnosed families, host our community events, produce vital educational resources, and fund active PDH research.

Absolutely! We love hearing your creative ideas and are here to support you every step of the way. Simply get in touch with us through our contact page, and we can provide you with advice, a sponsorship form, and help spreading the word to our community.

The easiest way is to set up a fundraising page through a platform like JustGiving, which sends the money directly and securely to us. If you have collected cash or prefer to do a direct bank transfer, please send us a quick email and we will gladly provide you with our charity bank details.

Not at all. While our foundation was built by families living with PDH, our community is open to absolutely anyone who wants to stand with us. Whether you are a friend, a colleague, or simply someone touched by our mission, we welcome your energy and support with open arms.

Yes, we welcome partnerships with businesses that share our values and want to make a meaningful impact. Whether you are looking to name us as your "Charity of the Year" or want to organise a team-building fundraising challenge, please reach out so we can discuss how to work together.

Keep in touch

Not ready to take on a challenge just yet? You can still be an important part of our journey. Follow us on Facebook to receive the latest research updates, inspiring family stories, and news about upcoming community events.