Family Fundraising Playbook
Pick one thing from this page. Download what it needs. Run it. You do not need fundraising experience, and every one of these has been run by an ordinary family with less time than they wanted.
What we are raising for
Treatments for OGT‑XLID. The science has reached the point where candidate treatments exist and can finally be tested. What is missing is money.
How the money is used
Everything goes into one research fund. We distribute it across several research groups according to our own roadmap, rather than committing it all to one laboratory.
Why a fund, not a project
This is standard practice among rare disease organisations. A pot lets us back the most promising work as it emerges, and it means no single group holds the whole future of this disease.
Find a fundraiser that fits your life
What we send you
This part is our job, not yours. You should never start from a blank sheet.
Every family gets
- QR poster, editable date and place
- QR table sign
- QR sticker sheet, for tins and jars
- What is OGT‑XLID, one page
- Where your money goes, one page
- Thank‑you cards
- Photo and consent form
- Safety checklist
- Social media kit, posts and photo frames
- Message templates: 6 texts, 4 emails, 8 posts
Letter templates
- To a school principal
- To an employer or HR team
- To a restaurant owner
- To a business, for sponsorship
- To a business, for an auction item
- To a venue, for free use of space
- To local press
- Thank‑you letter, suitable for framing
Per mechanic
- Quiz packs and scoresheets
- Bib numbers and route signage
- Tournament brackets
- Hole and lane sponsor signs
- Auction bid sheets and item cards
- Programme templates with ad slots
- Stream overlays and milestone graphics
- Jar labels and penny‑war scoreboards
And if you ask
- We join the call with your venue, school or employer
- We put you in touch with a family who ran the same thing
- A researcher records a short message for your event
- We issue every tax receipt
- We handle all the money, so you never touch a transfer
Download the kit
Open a file in Preview, Acrobat Reader or your phone, type into the blank lines, and print. Pick the paper your printer uses. The print shop versions carry bleed and crop marks for a professional printer. Everything else in the lists above is on its way.
Before you plan
Raffles, 50/50 draws and bingo are regulated gambling
In most US states these need a licence, are restricted to certain organisations, or are banned outright. This is the most common way a charity fundraiser breaks the law without realising it. Talk to us before you sell a single ticket.
Money, and why it never goes through your account
- All of it, including cash, goes through your fundraising page. This protects you from any suggestion of mishandling and means every donor gets a proper receipt.
- Counting cash: two adults, together, write the total down, both sign it, pay it in the same day.
- Only CureOGT can issue tax receipts. Buying a cupcake, a quiz ticket or an auction item is generally not fully deductible, because the donor received something in return. We handle the wording. Please do not promise donors a deduction.
Children, photographs and consent
- An adult is responsible at all times. Children may help but may not be left in charge of money or a stall.
- No child's photograph or name is used anywhere, including your own social media for the event, without a signed consent form. This applies to other people's children at your event too.
- We will send you the form. Ask us first, always.
Food, alcohol, permits and insurance
- Bake sales are usually fine. Selling prepared food at scale may fall under your state's cottage food or food handler rules. Check locally.
- Alcohol needs a licence, every time. Let the venue hold it.
- Public space usually needs a permit, including parks and sidewalks.
- Anything involving physical activity, a road, or a venue you do not control: ask us first. We may need to arrange cover, and we would much rather do that than find out afterwards.
Our name and how to describe what we do
- Use the logo files in your kit. Please do not redesign them.
- Do not describe CureOGT as funding a cure or a treatment. We fund research working toward one. It is a different and more honest sentence, and the scientific community notices the difference.
- The condition is written OGT‑XLID, hyphenated and capitalised.
When you have picked one
Download what you need and go. There is no form to fill in and nobody to wait for.
If you would like your own fundraising page, with a personal donation link and your own total to watch, get in touch with us directly. That one step is a conversation on purpose, because it is also where we find out what you actually need.
Email info@cureogt.org, or post in the CureOGT Facebook group. Say which fundraiser you have picked and roughly when. We reply within two working days.
Money figures on this page are rough planning guides, not prices, and they apply wherever you are. Shown in US dollars.