Plan An Event | Fundraising Toolkit | Volunteer

Roadmap to the FOXG1 Gene Therapy Fundraising Toolkit

Through collective fundraising efforts from FOXG1 families and friends, we are accelerating progress toward making life easier for everyone affected by FOXG1 syndrome.

One way to Fundraise, is by creating your own Fundraising team. Think of your fundraising team page as a GoFundMe, but it is done through the platform called Kindful.

This awesome toolkit, created by FOXG1 parent volunteers, offers set-by-steps tips to help you reach your goals!

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Join the race to a cure.

Ready...

Develop your Story

We all love stories, and we all have a story to tell.  People who support your fundraising efforts want to know your story. 

  • Who has been, or hopes to be impacted by the FOXG1 Research Foundation’s efforts?

  • Your funders want to know how your “Main Character” has personally experienced the struggles of FOXG1.

  • How is the FOXG1 Research Foundation making a difference in your life?

    • Connecting a supportive community</li>
    • Receiving cutting edge, reliable information about FOXG1 syndrome
    • Having a way to get involved-working toward a cure
    • The hope you have experienced from the amazing advances that have been made toward a cure.

  • Now using your “story” you created above, write a brief narrative to be displayed on your fundraising page. You may also want to film a quick video, or make a collage of pictures. However you choose to tell your story, make sure to save this resource for future use on social media and emails.

Set...

This is the information you should have ready to start your FOXG1 Fundraising Team.

  • How much have you raised in the past? What goal can you set for yourself that will motivate you toward weekly action?

  • Try to think of a creative and catchy name that will energize your team!

  • Try to state what impact you hope these funds will have on your child’s life, your family, or your community.

    Examples:
    “To raise $x toward getting FOXG1 into clinical trials to find a cure for (child’s name)”

    “To raise $x for the FOXG1 Research Foundation whose mission is to accelerate research to find successful therapeutics for FOXG1 syndrome and related neurological disorders while raising awareness and advocating for (Child’s name) and our family”

  • Now using your personal “story” you wrote previously, copy and paste it into the detailed description field.

  • Get your pictures and videos ready to upload!

GO!

Watch this video, by Eliza’s mom, for  step-by-step instructions on how to set up your team

Written step -by- step instructions on how to set up your Fundraising Team

Keep up the pace.

Once you have started your campaign, share your progress on social media. 

Ask your followers to support you in donating to your fundraiser to help you meet your goal. 

Continue to make your team page personal by including photos, videos and stories that show why these funds matter to you and your family.

Please tag the following accounts in your posts- and remember to ask everyone to re-post and share!

Tags
@foxg1research (instagram)
@foxg1researchfoundation (Facebook)

Always ink your fundraising team URL!

Post Samples

Personalize these for your network…

Example 1:

We/I are so excited to share that we have started a FOXG1 Fundraising Team with the FOXG1 Research Foundation.  They/We are making amazing strides towards a cure for FOXG1 syndrome while raising awareness and advocating for patients and families.

This cause is so close to my heart (personal story) - Please Donate!

Example 2:

Hey Everyone, We're raising funds for the FOXG1 Research Foundation. We have started a FOXG1 Fundraising Team! Will you take a minute to help my team (name of team) reach our goal and donate now? (enter your team url)

No amount is too small, and every contribution matters.

Please help us spread the word by reposting this to your network

Campaign Images

These social media images are ready for you! Customize with your FOXG1 Kiddos! Download and use these as much as you want!

Link your Fundrasing Team URL with your social posts. You can also share more ways to donate by clicking here.

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Instructions

  1. Click the Download link

  2. Click “Use template for New Design”

  3. Create a FREE Canva account (you do not need a PRO account!)

  4. Click “UPLOADS” in the far left hand column

  5. Upload the photo you would like to use from your local computer or Gdrive

  6. Drag your photo from the left hand column to the design- adjust as needed.

  7. Download your design.

  8. Upload this picture into Facebook as needed. 

  9. If you have any questions or need help, please contact: Brianna@foxg1research.org

Videos

Send out links to the videos from the FOXG1 Research Foundation YouTube channel.

Here are two of our favorites.

Link your Fundraising Team URL with the social posts. You can also share more ways to donate here: https://foxg1research.org/donate

The FOXG1 Research Foundation—Driving a Cure for FOXG1 syndrome

This is FOXG1 syndrome. Meet beautiful FOXG1 children from all over the world!

Email Message

Sending actual letters to your network is a great way to fundraise! Especially for people who don’t like to donate online.

Here is our 2024 appeal letter.

Print this letter or create your own with this language to do a fundraising mail campaign!

Dear FOXG1 Research Champion,  

As you know, the FOXG1 Research Foundation’s (FRF) mission is to accelerate research to find successful therapeutics for FOXG1 syndrome and related neurological disorders while raising awareness and advocating for patients and families. 

We have a very promising gene therapy that we are on track to begin clinical trials in early 2026. This will take a large fundraising effort, however, we’re seeing groundbreaking, curative results in preclinical data.  

You are part of something that we believe will greatly improve children’s lives in the next few years. Together, we can help FOXG1 children live a life without suffering.

Here is how you can help towards a cure:  

FOXG1 Research Foundation  c/o Nicole Johnson  
1051 Port Washington Blvd #1496, Port Washington New York 11050-1496 

We would love to talk to you! Please email us at contact@foxg1research.org to learn more. 

With sincere gratitude,  

Nicole Johnson and Nasha Fitter
Co--founders of the FOXG1 Research Foundation

Impact of Your Support in 2024: 

Because of supporters like you, we are immensely proud of the organization we have built, and the resources we have made available to our community.

Please see our 2024 Impact Report and our goals for 2025 HERE.

Ask for a business sponsorship or match.

Subject: Partner with FOXG1 Research Foundation to Make an Impact

Dear [Business Name] Team,

I’m reaching out to share an opportunity to make a profound difference in the lives of children affected by FOXG1 syndrome, a rare neurological disorder that severely impacts brain development. This cause is deeply personal to me because [insert your personal connection/story, e.g., "my child/sibling/niece has FOXG1 syndrome, and I’ve witnessed firsthand the challenges and the hope our community holds for advancing life-changing therapies"].

The FOXG1 Research Foundation is leading groundbreaking efforts to improve the lives of children with FOXG1 syndrome and related disorders. By partnering with us, your business can play a pivotal role in supporting this vital work while demonstrating leadership in corporate social responsibility.

How You Can Help:

  1. Business Sponsorship: Sponsors receive recognition on our website, at events, and across social media, showcasing your commitment to meaningful change.

  2. Donation Matching: Inspire greater impact by matching contributions during a specified period, encouraging others to give while doubling the results.

Your support will help accelerate research, provide hope to families, and build a future with better outcomes for children like [name or “those in our community”].

Please let me know if you'd like to discuss this opportunity further. I’d be happy to share more about our work and how we can collaborate. You can reach me at [Your Phone Number] or [Your Email Address].

Thank you for considering this partnership. Together, we can create meaningful change.

Warm regards,
[Your Name]
[Your Title/Role]
FOXG1 Research Foundation

www.foxg1research.org

Take a few minutes each week to login to your Kindful fundraiser on the FOXG1 website -FOXG1 Fundraising Teams - and thank your donors, upload a new video or picture, check on your progress, and send out an update.

For donors over $500 we suggest you write a handwritten thank you to send in the mail.

Watch to learn how to download donor lists.

Thank your donors

Thank you Email Template:

Hi (name), 

Thank you for donating to (my, our) FOXG1 Fundraiser, it means a lot that you are supporting these efforts. As you know this cause is very close to my heart.  (short story, personal testimony).

Your donation will be used to advance the exciting FOXG1 gene therapy!  To learn more please visit www.foxg1research.org

Sincerely, 
(Your name)

Thank You Social Media Message:

Thanks for supporting my efforts to raise funds for the FOXG1 Research Foundation! Your donation provides the funding to move closer to a cure, and also provides FOXG1 families with support and hope.  The progress that we have made is because of donors like you!

* Don’t forget to always add the URL to you team!