What is a Frizzle Ambassador?

A Frizzle Ambassador is a person who commits to fundraising a set amount of their choosing by reaching out to their contacts and networks and campaigning on behalf of Finding Hope for FRRS1L. All donations received will be processed through the Finding Hope for FRRS1L nonprofit online giving platform, and tracked through an individualized ambassador donation link.  

 Why should I become a Frizzle Ambassador?

Children with Frizzle Disorder struggle every day and their lives are constantly at risk. They are trapped in bodies they can’t control, and experience severe health issues. Many people have been moved by these children and their story of hope for a cure, and they want to help make that hope a reality by helping the nonprofit raise funds to pay for the development of this life saving treatment.

 If that’s you, then this is an easy way that you can help! It is a way that you can help families reach new contacts and networks that they themselves don’t know or can’t reach. It is a way to ease the burden of the families who have been tasked with funding the research themselves, all while taking care of their severely disabled children. By signing up, you can change their world, and you can change THE WORLD, helping to eradicate this disease forever. How often do we get a chance to have that level of impact?

 How does it work?

• Sign up by filling out this form (link: https://www.frrs1l.org/ambassadorform) with your information and your fundraising goal (and a short bio if you would like to be included in our website). 

• You will receive a confirmation email with a link to your individual giving page (e.g. frrs1l.org/yourname). This will be your personal donation link that you can share with your contacts.  

• In this link, you will also be able to track your donations with your own personal progress bar and see all the donations that have been made in your name.

• That’s it! Just share, watch the donations come in, and help change the lives of Frizzle children in the process!

 Note: You can also form a team and work together on your fundraising goal! If you want to work as a team, just note it in the questions or comments box.

 How do I choose a fundraising goal?

You can choose any amount you would like to raise starting at $1,000. It is good to be ambitious when setting your goal: think about how much you think you can raise, and then double it. People will surprise you with their kindness and generosity. And, there is no downside to aiming high! If you don’t meet your goal right away, then it’s okay! We will only be tracking and considering the donations received as we fund treatment. The goal is to help give you the Ambassador a target to work toward, as part of our bigger nonprofit treatment development goal.

 What tools do you give me?

• We find that videos are the most impactful tool when sharing the story of Frizzle. You can share the link to our latest video with the story and details on our website (frrs1l.org) or directly on youtube (https://www.youtube.com/watch?v=xtBpLmNpC0U)

• We have put together a FRRS1L FAQ page with more information about Frizzle, the research, and the fundraising campaign.

• On social media, Finding Hope for FRRS1L (@hope4frrs1l on Instagram and facebook.com/frizzlefighters on Facebook) has created content (and will continue to do so) that you can share with your networks, especially if you have contacts that might not already be aware of Frizzle.

• We have created an Ambassador logo to reflect your official designation as a Frizzle Ambassador. You can use this in your communications with your contacts, in your signature, or however you want! (We will send this as an attachment.)

• We have some marketing material (flyers, pamphlets, pitch letters, etc.) for different types of outreach. If you would like to include some of these in your communications, please reach out and we can send you marketing material based on your targets.

• Tip: We find that personalized emails are the most powerful way of reaching people –by email, text messages, or calls.

 What is your fundraising goal?

We have an immediate goal of raising $1.1 million by December 2024. This will allow us to complete the current pre-clinical research work and package the information for the US FDA, but even more importantly to pay for the US FDA required toxicology study, where they further test the safety of the gene replacement treatment on a second primate. This is required by the US FDA before we can treat Frizzle kids. The moment we receive the funds is the moment we can pay for the toxicology testing. Please refer to the FRRS1L FAQ sheet for more detailed and specific information about the research and total fundraising objectives (and a handy graphic!).