Volunteers needed

Do you have time to volunteer?

We’re a charity that supports families recently diagnosed with Nonketotic Hyperglycinemia (NKH), which is a rare and terminal metabolic disorder in children. Unfortunately, 80% of children born with NKH don’t see their first birthday. Our main goal is to raise funds for NKH Research.

We are always looking for people to support us in our mission. If you’re able to volunteer, we’d love to have you on board.

Volunteer Positions Available

DESIGNER/INDESIGN SKILLS

We have plenty of translations for Charlie the Crow (so we can sell them in dual language format, a tactic which worked well for our first book, Eva the Adventurer). What we need is someone to take the existing In Design File, update with the translations, and deliver the PDF back.

It’s very simple and just requires In Design knowledge, an Adobe Creative Cloud account and time.

If you are a designer, familiar with In Design and have some spare time, we’d really love to chat!

APPLY FOR GRANTS

Some of our funding comes from grants. But to receive a grant, you have to apply. We have a list of potential grants available. We’d like someone who has an internet connection and a printer, to apply on our behalf. We’ll give you five potential charities, you do a quick check to see if we’re eligible, and if so, send a letter or application off. Very easy!

If this is something you’d like to help with, please get in touch.

SEO SPECIALIST

When a family receives a diagnosis, they are told hard to hear things. That their baby is likely to be severely disabled. That their newborn is likely to die imminently. They’re told by their consultants that they don’t know much about this disorder, and send them on their way. Parents immediately google NKH.

We run foundationnkh.org, a patient information website for families who have just received a heartbreaking diagnosis. We’ve done our best to fill the gap and share knowledge for families who are trying to accept their unacceptable.

But, if you google ‘Nonketotic Hyperglycinemia’ it only comes up on the third page – ouch. We are looking for someone to help us get the website where it needs to be, so families can find the information they’re looking for, to help them make sense of a very confusing, very heartbreaking time.

We’re looking for someone to help us improve our SEO ranking, and get our website in front of newly diagnosed families.

Can you help? We’d love to speak to you if you have any SEO experience.

WEBSITE CONTENT CREATOR/COPYWRITER/DESIGNER

When a family receives a diagnosis, they are told hard to hear things. That their baby is likely to be severely disabled. That their newborn is likely to die imminently. They’re told by their consultants that they don’t know much about this disorder, and send them on their way. Parents immediately google NKH.

We run foundationnkh.org, a patient information website for families who have just received a heartbreaking diagnosis. We’ve done our best to fill the gap and share knowledge for families who are trying to accept their unacceptable.

But, we’re a small, time poor team, and the website is not what it could be. Some pages only have half the content they should, some pages are unhelpful, some need updating.

We’re looking for someone to help review the content, pare back what doesn’t need to be there, and curate/write the content that does.

Are you a UX designer, familiar with arranging text-heavy content so it makes sense? You are a copywriter? Do you have an interest in biomedical information? Are you familiar with raising a severely disabled child with complex medical needs?

If you are any of the above, we’d love to chat!

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