GSA GrassrootsFundraising Toolkit

Grassroots fundraising is a great way for YOU to increase awareness of Gorlin syndrome and support the mission of the GSA. Some of the most effective and fun fundraising happens on a small scale. You and your personal network can make an enormous impact on the lives of those living with this rare disorder.

Step 1: Tell Your Story

THE HEART OF GIVING BACK IS YOUR STORY!

It is YOUR personal connections and YOUR story that will move people to action! What to consider when developing “your story”.

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Be Concise – As anyone living with Gorlin syndrome knows, the journey is anything but short and simple! Try not to overwhelm readers or listeners with too much information.
Identify Your Defining Moments – Focus on the these points in your journey by asking yourself the following questions:
- How did you feel the moment you, or someone close to you, was diagnosed?
- What has been one of the most painful experiences (physically or emotionally) you have had?
- Think of a time you got much needed clarity…how did that feel?
- When is a time you have felt deeply supported?
Think of a time you got much needed clarity…how did that feel?
When is a time you have felt deeply supported?

“Close your eyes and think back to the moment you heard of your or a loved one’s diagnosis with Gorlin syndrome (GS). The initial shock, concern, uncertainty, and fear you felt in those early moments and days. Add to this getting the news mid-pandemic and that’s how our family began our GS journey.

My name is Taylor and my son, now five-years-old, was diagnosed in 2020. The sense of isolation, never ending questions and realization that this is such a rare disease was completely overwhelming. Like most people today, I hopped on the internet to see what I could learn about GS and hopefully find another family or two who were facing the same issues. That one internet search changed everything.

I didn’t find one or two families; I found my tribe.”

Step 2: Develop your “why”?

Why should people donate?

Ask yourself how has the GSA helped you?

Or why do you believe supporting the GSA is important?

Here are some ideas to help spark your “why”:

The GSA provides a community for people living with Gorlin syndrome.
The GSA is often the first place individuals and families turn to when receiving a diagnosis.
The GSA is a resource for medical professionals diagnosing and treating people with this rare disorder.
The GSA is driving research to identify better treatment options and ultimately a cure for Gorlin syndrome.

Step 3: Set Clear Goals

Define specific, achievable goals for your fundraiser. These goals could include raising a certain amount of money, increasing awareness about Gorlin syndrome, or engaging a specific number of participants in your event.

“The GSA was and is there when my family needs them the most.

Now I am asking YOU to be there for other families like ours!

Supporting patients and their families is critical! Will you stand with us?”

– B.S.

Your donation will provide support, education, and allow the GSA to fight for better treatments and a cure for Gorlin syndrome.

Step 4: Choose a Fundraising Idea

There are countless fundraising methods to choose from. Consider your interests, how much time you have, resources, and target audience when making a selection.

Some popular grassroots fundraising ideas include:

Social Media Campaigns (Birthday/occasion) : Launch social media campaigns encouraging followers to donate or participate.
Physical Events: Host events like bake sales, car washes, or community yard sales. Partnerships: Partner with local businesses to host fundraising events or donation drives.
Virtual Events: Organize virtual events such as online auctions, talent shows, or virtual races where participants can join from anywhere.
Social Media Challenge (e.g., #GorlinSyndromeAwarenessChallenge)

Step 5: Plan Your Fundraiser

Once you have selected a fundraising idea, create a detailed plan outlining logistics, budget, and timeline. Consider the following:

Date and Venue: Determine when and where the fundraiser will take place. For virtual events, choose a suitable online platform.
Budget: Estimate expenses such as supplies, marketing materials, and any location rental fees.
Promotion: Develop a strategy to promote your fundraiser. Utilize social media, email newsletters, and local media outlets to spread the word.
Volunteers: Recruit volunteers to help with planning, promotion, and day-of activities. Safety Measures: If hosting an in-person event, ensure compliance with local regulations and implement safety measures to protect participants. You may want to get special event insurance for the day.

Step 6: Create a Fundraising Page

Set up a dedicated fundraising page (contact the GSA for tools for creating fundraising pages) or use Facebook Fundraisers.

The GSA is happy to share information on fundraisers as appropriate.

Step 7: Engage Participants

Encourage participation by providing incentives, such as prizes for top fundraisers or exclusive merchandise for donors. Keep participants engaged leading up to and throughout the fundraiser with regular updates, behind-the- scenes content, and interactive challenges.

Step 8: Execute Your Fundraiser

On the day of the fundraiser, execute your plan and ensure everything runs smoothly.

Delegate tasks to volunteers, engage with attendees, and thank donors for their support.

Step 9: Follow Up and Thank Donors

After the fundraiser, follow up with donors and volunteers to express gratitude and provide updates on the impact of their contributions. Share photos, videos, or testimonials highlighting the success of the fundraiser and how it has benefited the GSA.

Step 10: Evaluate and Learn

Think about your fundraiser’s outcomes, including funds raised, engagement levels, and lessons learned. Use this feedback to improve future fundraising efforts and continued support of the GSA.

Step 11: Stay Connected

Maintain ongoing support for the GSA by staying informed of their initiatives, participating in events, and advocating for awareness of Gorlin syndrome within your community.