alport uk

Don’t Wait Fund

Dont wait Fund


 What is the Don’t Wait Fund?

Sam Clarke cycled 4,765 miles across Europe and with Gift Aid raised £23,500 for Alport UK.  Living with Alport Syndrome himself, Sam set up this special fund as part of his Fighting Failure Challenge to inspire others living with Alport Syndrome to set themselves their own challenge.

Sam wants to inspire others with Alport Syndrome to keep positive and experience the value of setting oneself a new challenge such as a new type of exercise, learning a new sport or trying a new activity.

Why bother with a new activity?

Sam Clarke’s experiences over the last 20 years have taught him that hobbies and sports increase his positivity, mental health and well-being. They are the key ingredients to accepting yourself and the condition we have to live with. Research shows that these are vital ingredients to maintain good mental health for anyone living with a life-long rare disease. The internationally renowned Transplant Games are living proof of this. If the activity is a sport, our medical Trustees recommend sports that build cardiovascular fitness such as cycling or running, but not bodybuilding which is thought to have a detrimental effect on Alport kidneys.

How Alport UK funded Sam and a couple of other young people

What we will fund

How to Apply.

Who can apply?

  • Anyone with Alport Syndrome or
  • A sibling of an Alport Syndrome patient who is impacted by it

Where do I start?

Email us with this information:

  • Information about your challenge or activity
    • What do you want to do?
    • How will you have fun?
    • What benefits will you gain?
    • How much will it cost in total? This might include the cost of a one-off piece of equipment plus some lessons – just tell us how the money will be spent
  • The name of your nephrologist and renal unit where you go for check-ups with a photograph/PDF of an appointment letter (within the last 12 months)
  • Your contact details – email and phone number

We will confirm we have received your email, will consider your request, and will let you know as quickly as possible whether you have been successful – usually within a week. Good luck!

Feeling a bit unsure?

We are happy to work with you before you submit a proposal, to help you shape and develop your ideas, and perhaps also help you get sponsorship from local companies – email us here.

What we ask of you

  • You provide receipts or invoices to show how the money has been spent
  • You share your story to inspire others to try a new activity. We will not ask you to do this until you are confident you enjoy the challenge and have achieved some of what you set you to do. You could make a short video, a series of photos, or write a social media post for us, and we are happy to help you with this.
  • After a year of funding, think about raising funds for Alport UK. This is an essential part of an application for a sibling of someone impacted by Alport Syndrome. We want to keep the fund going to allow others to benefit, and raising funds is how we will achieve that. If everyone manages to fundraise the amount they are granted, the fund will keep going indefinitely. Your fundraising could support the Don’t Wait Fund, or you might want to fund a piece of research, or support others with Alport Syndrome.

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