Fundraising Ideas and Tips

People love helping their friends, families, and co-workers. You will be amazed at how much money can be raised by simply asking! You can help SDSF and its community of patients and families live better lives and hopefully, the funds can one day help find a cure.


It is SUPER EASY to fundraise on facebook! Click on the picture or link to learn step-by-step instructions on how YOU can fundraise for the Shwachman Diamond Syndrome Foundation to FIND A CURE!

This is a simple fundraising idea for your place of employment, local businesses or even your child’s school. Most people have heard of or participated in something like this before. Participants would get to dress down in exchange for a donation. 100% of donations go to the Shwachman Diamond Syndrome Foundation to support research and help find a CURE!
Click to Download and Customize a “Casual for a Cure Flyer”.


  • 5K Run/Walk
    • Plan a 5K Run/Walk race or a fun run in your area. You can have t-shirts for participants and medals for winners in certain age groups.
  • Raffle/Silent Auction
    • Ask local businesses to donate items, packages, or gift cards to your event. Plan a dinner, make tickets, and do a raffle to raise more money.
  • Bounce House Fundraiser
    • Ask a bounce house business or rent your own bounce house and plan a kid-friendly event. You could also have a silent auction or attendance prizes donated by businesses.
  • Tournament (Golf, Softball, Bowling, Chess, etc.)
    • Gather friends and family and make some teams to compete in a tournament. You can have t-shirts made and trophies for the winning team.
  • Car Wash
    • Plan a car wash at a local business that will provide the location and water hookup. Ask friends and family to help wash cars and don’t forget to make flyers and signs to advertise.
  • Garage sale/Bake Sale
    • Plan a garage sale and/or bake sale. Ask friends and family to go through their closets for unwanted stuff that they can donate to your garage sale.
  • T-shirts
    • Design a custom t-shirt for the patient and proceeds of the shirt sales are donated to SDSF
  • “Direct Sales Company” Fundraiser
    • Find an independent consultant for a company such as Thirty-One Gifts, Scentsy, Mary Kay, Tupperware, Avon, Premier Jewelry, Pampered Chef, etc. Ask the consultant to donate proceeds to SDSF.
  • Birthday Party
    • Instead of gifts for your child, you can ask guests to make a contribution to SDSF in lieu of gifts.
  • Dance Party
    • One family was able to secure a band, get a location donated for their use. They sent out invitations to all their friends telling them that the dance will be a fundraiser for SDSF
  • Carnival
    • One family was given the use of a park, got donations of carnival games, prizes, food, etc. and had a carnival.
  • Jeans /Free Dress Day
    • Ask your boss/principal to sponsor a dress-down day at work or school. Each employee or student who participates can pay a fee to be used as a donation.


  • Fundraiser Guidelines
    • Before planning any type of fundraiser for the Shwachman Diamond Syndrome Foundation, please review our SDSF Fundraiser Guidelines.
  • Six Week Event Planner Guide:
    • 6 weeks out: Determine what event you think will work best for you and Ask for Help! Ask your family, friends and colleagues to volunteer to help. You’ll want 2-3 people minimum as your organizing committee. Do you want to host a Dance? Party with raffle prizes? Golf or Tennis or Chess Tournament?
    • 5 weeks out: Get Organized! Set a location, date & time. Determine a fundraising goal, set up a Facebook page or event and invitation, make flyers or invitations. Ask local businesses to sponsor/donate to your event. If you can’t get dollars, get in-kind donations such as food, prizes, hall rental. Order SDS rubber bracelets or create and order t-shirts from your local supplier.
    • 4 weeks out: Spread the Word! Email/mail/share your invitation or flyer. Ask friends and family to volunteer to help at the event. Reach out to civic & religious organizations you are involved with. Contact news media.
    • 3 weeks out: Check Final Details! Print signs and other materials for event location. Gather donations of refreshments. Stay in touch with your volunteers.
    • 2 weeks out: The Home Stretch! Send reminders to registrants and volunteers. Double check supplies and materials.
    • 1 week out: Countdown to Success! Check weather reports. Verify contingency plans. Confirm volunteer assignments.
  • Spreading the Word/Publicity
    • Create your own online fundraising page with pictures and information about your fundraiser. Send your fundraiser page to family, friends, and colleagues – anyone you think will help you reach your goal.
    • To get the word out about your event and to help with registration, create a facebook page or event. Have friends/family share the event on their facebook page.
    • Contact your local paper to alert them of the event. This way, you gain more donors and awareness of SDS. Contact the editors of the newspapers or contact a radio/TV station. Make sure they print the full name of the disease and give them a brochure or the web site address for them to get their information from. Also, make sure they print the web site name:
  • Other Tips/Information
    • Consider printing a program for your event that acknowledges all donors and pass it out at the event
    • Make sure that you send thank-you letters to all donors for their contributions, whether financial or in-kind items. Please send a list to the Board of any donor who has given over $250.00 so that they may receive a legal tax deduction letter. You may notify the Board if you want those names to appear in the newsletter on the donor page or if you would like to keep those names privately held. If you ask for privacy, the Board will certainly honor your request. SDSF will send all donors thank you letters.
    • Federal tax disclosure requirements: All charities are required by federal law to let their participants know what part of their entry fee/ticket price is tax deductible and must be printed on the invitation. For example, if you serve dinner with your event valued at $25.00, and you charge $75.00 to come to the event, then the deduction is anything over $50.00. Your disclosure would read: Tax deductible in excess over $50.00.
    • Do you need SDSF brochures, bracelets, t-shirts, banners, etc. to use at the event? Email Us


Shwachman-Diamond Syndrome Registry
Global Genese Rare Foundation Alliance
Genetic Alliance
NORD 2021 Platinum Member
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