Fundraising & Awareness
ReNU Syndrome United's ability to live out its mission is powered by our community of families, friends and supporters. We empower families by providing resources, support, and hope for the future through pursuing the discovery of therapeutic treatment options.
You can help us achieve our mission faster by spreading the word about RNU4-2 / ReNU Syndrome, and fundraising for ReNU Syndrome United. Below are some ways ReNU Syndrome United receives donations. From tagging your ReNU Warrior's story on social media to hosting a golf tournament, there are plenty of opportunities for you to get involved!
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Register for the Move4ReNU fundraiser:
https://www.zeffy.com/en-US/fundraising/move-4-renu
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Click here for a PDF of the checklist document.
Phase 1: Pre-Event Planning(3 Months Before)☐ Connect with potential collaborators and partners Set event details (date, location, permits, insurance)
☐ Define fundraising target and participant estimates Build fundraising plan (sponsorship tiers, donation opportunities, request letters)
☐ Encourage donors to utilize employee match programs
☐ Develop marketing strategy (social media, flyers, press releases, branded merchandise, registration page)
☐ Request approval from Committee Chair
Phase 2: Midway Preparation (1–2 Months Before)
☐ Recruit and train volunteers (registration desk, route guides, refreshment stations, cleanup crew)
☐ Secure event supplies (tents, signage, sound system, refreshments, prizes)
☐ Order participant materials (bibs, t-shirts, giveaways)
☐ Build community excitement (teasers, spotlights, email reminders)
☐ Confirm sponsorships and donations (logos, banners, promotional content)
Phase 3: Final Prep & Event Day(Last Month & Day Of)
☐ Finalize event logistics (venue layout, permits, insurance, backup plans)
☐ Prepare event kits (first aid, check-in lists, volunteer badges)
☐ Distribute instructions to volunteers and sponsors
☐ Share reminders on social media/email ☐ Facilitate sponsor/donor recognition
☐ Event Day Execution:
• Volunteers arrive 2–3 hours early
• Setup registration desk and stations
• Welcome participants, thank sponsors
• Monitor event and post live updates
• Host closing ceremony & cleanup
Phase 4: Post-Event Activities (0–4 Weeks After)
☐ Send thank-you emails within 48 hours
☐ Report total funds raised
☐ Send handwritten letters to major donors
☐ Highlight sponsors/donors on social media
☐ Share event photos and updates in newsletters
☐ Collect participant feedback surveys
☐ Finalize outstanding pledges/donations
☐ Provide feedback and indicate future interest
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Contact Rachel with a high-resolution photo and specify the language for your frame
For best results, ensure the subjects are centered and leave space around them so the frame doesn't cover them
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ReNU Syndrome United has a nonprofit account with the PayPal Giving Fund, allowing anyone to create a Facebook Fundraiser in support of ReNU.
ReNU Syndrome United is available on Benevity for corporate contributions.
ReNU Syndrome United is a registered 501(c)(3) charity.
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Shop for ReNU Swag at our Bonfire Store, where a portion of every sale goes towards ReNU Syndrome United.
If you have local friends interested in ordering, consider placing a bulk order to save on shipping costs.
If you know of other swag companies you recommend, reach out to united@renusydrome.org.
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Facebook Fundraiser
Facebook makes it easy to create an online fundraiser to benefit ReNU Syndrome United. Consider creating a fundraiser for your birthday in leu of gifts, during a special event, or anytime of year!Set a goal—whether it’s $100 or $5,000, every dollar advances our mission—and share with your family and friends. It’s quick and easy to set up! Use the preloaded information, or fill out the details with your specific fundraising information.
5K or Marathon
Raising money for ReNU Syndrome United while competing in a race or marathon is a powerful way to combine personal fitness goals with meaningful philanthropy.Whether you’re an experienced runner or a first-time participant, you can make a significant impact by dedicating your race to a worthy cause such as ReNU Syndrome United, which is committed to finding a cure for ReNU syndrome.
Start by selecting a race or marathon that inspires you and aligns with your fitness level.
Register for the event and create a fundraising page on a reputable platform, such as Zeffy (email rachel.johnson@renusyndrome.org), GoFundMe, or Facebook, making it easy for friends, family, and colleagues to support your efforts.
Personalize your fundraising page with your story, explaining why you are passionate about ReNU Syndrome United and the importance of funding research for ReNU. Use compelling images and videos to make your page more engaging and informative.
Set a realistic fundraising goal and break it down into smaller milestones to keep yourself motivated and your supporters engaged.
Promote your campaign through social media, email, and word-of-mouth, regularly updating your progress and sharing your training journey.
Engage with local businesses and community groups to seek sponsorships or matching donations. Offer to wear branded gear during the race in exchange for their support, providing them with publicity in return.
Create incentives for donors, such as personalized thank-you notes, shout-outs on social media, or small tokens of appreciation.
On race day, wear a T-shirt that highlights your cause and fundraising efforts to raise awareness among fellow participants and spectators.
After the race, celebrate your achievement and the funds raised by sharing photos and a heartfelt message of gratitude with your supporters. Highlight the impact their contributions will have on advancing the mission of ReNU Syndrome United and improving the lives of those affected by ReNU.
By combining your athletic pursuit with a fundraising campaign, you can turn every step of your race into a stride towards a better future for individuals and families impacted by ReNU syndrome.
T-Shirt Sales
Fundraise on Bonfire
Launch an online t-shirt fundraiser to benefit ReNU Syndrome United on Bonfire! Bonfire makes it easy to create your own t-shirt designs using custom artwork or Bonfire’s design tools. Bonfire takes care of all the orders, printing and shipping.For more details check the links below:
Start a t-shirt campaign to benefit ReNU Syndrome United [https://help.bonfire.com/en/articles/1614150-send-payouts-to-a-beneficiary]
Information on how to run a t-shirt campaign [https://www.bonfire.com/fundraising/]
Shipping rates (international and domestic) [https://help.bonfire.com/en/articles/1614145-shipping-rates-fees]
Host your own T-shirt Fundraiser
Start by designing a unique and appealing T-shirt that resonates with your cause and supporters. Incorporate the ReNU Syndrome United logo, a catchy slogan, and meaningful graphics that highlight the mission and impact of the organization. Partner with a reliable T-shirt printing company that offers quality products and competitive pricing.Decide on the types of T-shirts to offer, such as various sizes, colors, and styles, to appeal to a wide audience. Set a reasonable price point that covers costs while maximizing fundraising potential. Promote the T-shirt fundraiser through word of mouth, your social media platforms, email and phone calls to family and friends, and on your personal website if you have one, providing clear information on how to purchase the shirts.
Encourage supporters to share the fundraiser with their networks, expanding your reach. Consider offering incentives, such as a small discount for bulk orders or a limited-edition design for early buyers. Highlight stories of individuals affected by ReNU, including your warrior, to create a personal connection and motivate purchases. Throughout the campaign, provide updates on progress and share photos of supporters wearing their T-shirts to build excitement and community.
Ice Cream / Cocoa for a cause
Hosting an ice cream or cocoa for a cause fundraiser is a delightful way to bring people together while raising funds for ReNU Syndrome United.Start by selecting a date and location, such as a community center, park, or school, ensuring there is ample space for attendees.
Reach out to local businesses for sponsorships or donations of cocoa, ice cream and toppings.
Advertise the event through social media, local newspapers, and community bulletin boards to attract a wide audience.
Set up stations with various ice cream flavors, toppings, and cones, and consider adding fun activities like games, music, and contests to create a festive atmosphere.
Charge an entry fee or suggest a donation amount, and provide clear information on how the funds will support your cause.
Volunteers can help with serving, organizing activities, and ensuring the event runs smoothly.
Restaurant Fundraiser
Hosting a restaurant fundraiser is an effective way to raise money for ReNU Syndrome United while supporting local businesses.Begin by partnering with a local restaurant that agrees to donate a percentage of their sales on a specific day to ReNU Syndrome United.
Coordinate the date and details with the restaurant, ensuring it doesn’t conflict with other events.
Promote the fundraiser through social media, community boards, email newsletters, and word-of-mouth to maximize attendance.
Create and distribute flyers and encourage supporters to dine at the restaurant on the designated day.
Some restaurants may allow you to set up a table to provide information about your cause and collect additional donations.
Ensure that restaurant staff are well-informed about the event so they can remind patrons of the cause their dining supports.
After the event, publicly thank the restaurant and patrons for their support to build goodwill and set the stage for future collaborations.
Trivia Night
Hosting a trivia night fundraiser is a fun and engaging way to benefit ReNU Syndrome United and support our mission.Start by selecting a suitable venue, such as a local community center, restaurant, or virtual platform, and choose a date that allows ample time for promotion.
Partner with local businesses to sponsor the event or donate prizes for the winning teams.
Promote the trivia night through social media, email newsletters, community boards, and word-of-mouth to attract participants.
Prepare a variety of trivia questions across different categories to appeal to a wide audience, and consider incorporating a few questions about ReNU Syndrome United and ReNU to raise awareness.
Charge an entry fee for teams to participate, and offer additional fundraising opportunities such as raffles, silent auctions, or donation stations.
Provide refreshments or partner with a local food vendor to keep participants energized.
Throughout the event, share information about ReNU Syndrome United’s mission and the impact of their contributions.
By combining knowledge, competition, and community spirit, your trivia night fundraiser can generate a large amount of funds for ReNU Syndrome United!
Golf Tournament
Hosting a golf tournament is an excellent way to benefit ReNU Syndrome United and support our mission to find a cure for ReNU, regardless of if you golf or not!Begin by selecting a reputable golf course and setting a date that allows ample time for planning and promotion (6-12 months).
Collaborate with the golf course management to arrange the logistics, including tournament format, registration process, and any special accommodations needed.
Seek sponsorships from local businesses and organizations to cover costs and provide prizes for participants.
Promote the event through social media, community bulletins, email newsletters, and local media to attract golfers and supporters.
Design various fundraising activities throughout the day, such as a silent auction, raffle, or hole sponsorships.
Charge an entry fee for participants, and consider offering different packages that include meals, drinks, and branded merchandise.
Provide opportunities for non-golfers to participate by hosting lunch, a post-tournament dinner, or awards ceremony where you can share the mission and impact of ReNU Syndrome United.
Throughout the event, ensure there are informative displays and announcements to educate attendees about ReNU and how their contributions are making a difference.
A golf tournament offers a blend of sport, networking, and philanthropy, creating a memorable and impactful way to advance the cause of ReNU Syndrome United.
Silent Auction
Hosting a silent auction is a fantastic way to benefit ReNU Syndrome United and support our mission.Start by selecting a venue, such as a community center, banquet hall, or even a virtual platform if you want to reach a broader audience.
Choose a date and time that allows sufficient lead-up for planning and promoting the event.
Begin by soliciting donations of auction items from local businesses, artisans, and supporters. Popular items include gift baskets, event tickets, unique experiences, artwork, and gift certificates.
Promote the silent auction through social media, email campaigns, community bulletins, and local media outlets to attract attendees and donors.
On the day of the event, create an inviting atmosphere with clear displays for each item, including descriptions, starting bids, and bid increments.
Provide bidding sheets or use a mobile bidding platform to streamline the process. If you need a platform to hostsilent auctions, we are registered with Zeffy.
Enhance the event with refreshments, entertainment, and informational booths about ReNU Syndrome United and ReNU to educate attendees on the cause they are supporting.
Encourage competitive bidding by highlighting unique and high-value items and periodically updating guests on the current highest bids.
Engage attendees by sharing success stories and the impact of their contributions during the event.
Conclude the auction with an announcement of winners and a heartfelt thank you to all participants and donors.
Scavenger Hunt
Hosting a scavenger hunt fundraiser is a dynamic and engaging way to support ReNU Syndrome United and our mission.Begin by selecting a date and a suitable location such as a local park, downtown area, or even a school campus.
Ensure the venue is large enough to offer a variety of hiding spots and challenges.
Develop a creative theme that ties into ReNU Syndrome United’s mission or a fun, community-oriented concept to make the event more appealing.
Next, design a series of clues and challenges that participants will need to solve or complete. Make sure these vary in difficulty to cater to different age groups and skill levels.
Create maps or lists to guide participants through the hunt.
To maximize participation, charge an entry fee for individuals or teams, and offer early bird discounts or special group rates.
Secure sponsorships from local businesses to cover costs and provide prizes for the winners. Sponsors can also offer in-kind donations such as refreshments, promotional materials, or venue space.
Promote the scavenger hunt through social media, community boards, email newsletters, and local media outlets.
Set up an online registration platform to streamline the sign-up process and collect entry fees.
On the day of the event, establish a central check-in point where participants can receive their materials and instructions. Brief them on the rules, safety guidelines, and the importance of respecting public and private property.
Throughout the event, station volunteers at key points to assist participants, verify completed challenges, and ensure everything runs smoothly.
Consider incorporating additional fundraising activities like raffles, merchandise sales, or donation stations to boost contributions.
After the hunt, hold an awards ceremony to announce winners, distribute prizes, and thank everyone for their participation and support.
Finally, follow up with a thank-you email to all participants and sponsors, including highlights from the event and details on how their contributions are aiding ReNU Syndrome United’s mission. Hosting a scavenger hunt fundraiser not only raises crucial funds but also fosters community spirit and awareness for ReNU, making it a memorable and impactful event.
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Contact Rachel with a high-resolution photo and specify the language for your frame
For best results, ensure the subjects are centered and leave space around them so the frame doesn't cover them
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Every Wednesday, we will highlight one of our ReNU Warriors and share their story. Submit your story here to be featured and help us drive traffic to our website
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Spread the word about ReNU Syndrome by sharing your story with your network, both online and in person.
Images that have associated stories get promoted to the top of our Gallery.
Submit your story here to be featured!
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Share this page for links to guides in multiple languages for families, children, and country-specific ReNU websites
Share ReNU Syndrome Guide
Share the ReNU Clinical Companion
Share Testing Resources
Contact united@renusyndrome.org to let us know if anyone wants to meet with ReNU Syndrome United to ask questions or share resources
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Take photos, and post them on social media with: #ReNUwarrior #ReNUsyndrome #ReNUsyndromeunited #ReNUawareness #ReNUhope #Blue4ReNU
How to Start a Facebook Fundraiser