Peer-to-Peer Fundraising Toolkit

Thank You

Thank you for joining the FOXG1 Race to a Cure ! 

Through the collective efforts of our fundraising teams, we are on the road to creating an easier life for everyone on this FOXG1 syndrome journey.

The more FOXG1 families and friends that come together to help fundraise, the faster we will reach our goals! We are focused on raising the funds necessary to move our gene therapy program through clinical trials. 

This toolkit will help you join the race and maximize your efforts towards the goal. Every dollar helps get us closer to giving every person with FOXG1 syndrome the healthy life they deserve.

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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 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 include the following hashtags and links in your posts- and remember to ask everyone to re-post and share!

Hashtags
#FOXG1racetoacure
#foxg1
#raredisease
#rarediseaseawareness
#CureFOXG1
#foxg1syndrome
#foxg1awareness

Tags
@foxg1research (instagram)
@foxg1researchfoundation (Facebook)

Link your fundraising team URL

Post Samples

(Please 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 to find successful therapeutics for FOXG1 syndrome and related neurological disorders while raising awareness and advocating for patients and families. This cause is 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? https://foxg1research.org/donate

No amount is too small, and every contribution matters. (Even if you can't donate now, would you 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 amazing videos provided on 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 (General Video)

THIS IS FOXG1 SYNDROME. Meet the beautiful FOXG1 children all around 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 identified a very promising gene therapy candidate that we are now laser focused on bringing through clinical trials.  For this program to get to clinical trials, our next steps are Toxicology and GLP Manufacturing, in order to test for safety. These two phases cost a minimum of five million dollars each. This will take a large fundraising effort, however, we’re seeing groundbreaking, curative results in preclinical data! This work could also contribute to research for a variety of neurological disorders such as Autism.  

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  
One Luckenbach Lane  Sands Point, New York 11050 

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 in the last year: 

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. Here are some of the highlights from the past year: 

  • Successful preclinical results showing gene therapy programs can upregulate the FOXG1 gene, rescue symptoms, and do so safely.

  • Hiring of Chief Drug Development Officer to lead us successfully through clinical trials and IND filing with the FDA and other regulatory agencies. 

  • Naming Dr. Soo-Kyung Lee our Chief Scientific Officer, who runs the FOXG1 Research Center of Excellence at the University at Buffalo with a team of >20 members focused solely on FOXG1 syndrome 

  • Published paper on FOXG1 syndrome from our FOXG1 patient registry; 3 more publications underway 

  • Building of FOXG1 bioinformatics platform for all raw data and AI capabilities 

  • Implemented monthly parent support group zooms and webinars  

  • Connecting newly diagnosed families to resources, medical professionals, and other families  

  • Relocating FOXG1 Ukraine family to safety from war torn area

  • Becoming sought-after thought leaders/ speaker on podcasts and conferences

Facebook Frame

Change your Facebook Frame for FOXG1 Awareness!

Links to Website

Add these links in your communications with your team to highlight the amazing work the Foundation is doing!

Update your Fundraiser

Upload a new video or picture, check on your progress, and send out an update: https://foxg1research.org/

Follow up with your team

Remember to follow up if you don’t hear from someone you expected to!

Ask for a business sponsorship or match.

[Your Name]
[Your Title/Role]
FOXG1 Research Foundation
[Your Contact Information]
[Date]

[Business Name]
[Contact Person's Name, if available]
[Business Address]
[City, State, ZIP Code]

Subject: Proposal for Business Sponsorship or Donation Matching Partnership for FOXG1 Research Foundation

Dear [Business Name] Team,

I trust this letter finds you well. My name is [Your Name], and I am writing on behalf of the FOXG1 Research Foundation.

We live here in [Name of town/city/community where the business is also], and we are profoundly grateful for the unwavering support our family has received from this community.. [Add a personal account of the challenges you face related to FOXG1and of your experience in the community ]. The kindness and generosity people have shown has been a beacon of hope, reminding us that we are not alone on this journey. The community has come together to truly support [name of child] wanting to see [her/him], and all of the children like [her/him] live an easier, healthier life without suffering.

We are reaching out to you with a significant opportunity to make a meaningful impact on the lives of those affected by FOXG1 syndrome, autism-related conditions, as well as other children's neurological diseases, and to advance critical research in our mission to find a cure.

About the FOXG1 Research Foundation:

The FOXG1 Research Foundation is committed to accelerating research to find successful therapeutics for FOXG1 syndrome and related neurological disorders while raising awareness, and supporting and advocating for patients and families worldwide. We believe that with the support of compassionate partners like [Business Name], we can accelerate our progress towards improving the lives of individuals and families affected by FOXG1 syndrome. Together, we can help FOXG1 children live a life without suffering.

Proposal: Business Sponsorship or Donation Matching:

We are seeking a partnership with [Business Name] through either direct sponsorship or a donation matching program. Your support will not only align your company with a cause that truly makes a difference but will also provide you with the opportunity to be recognized as a leader in corporate social responsibility.

Option 1: Business Sponsorship Proposal

We invite [Business Name] to become a valued sponsor of the FOXG1 Research Foundation. In return for your generous sponsorship, we offer a range of benefits, including logo placement on our website, recognition at our events, and social media mentions. Your association with our cause will be communicated to our engaged community.

Option 2: Donation Matching Proposal:

Alternatively, we propose a donation matching program, where [Business Name] agrees to match all donations made to the FOXG1 Research Foundation during a specified period. This initiative not only encourages increased support from our existing donors but also attracts new contributors who may be motivated by the impact of their donation being doubled.

We understand the significance of corporate social responsibility, and we believe that a partnership with [Business Name] will not only benefit our organization but will also enhance your company's reputation and community engagement.

I would be delighted to discuss this proposal further at your convenience. Please feel free to contact me at [Your Phone Number] or [Your Email Address] to schedule a meeting or address any questions you may have.

Thank you for considering this partnership opportunity. We look forward to the possibility of working together to bring hope and progress to those affected by FOXG1 syndrome.


Sincerely,

[Your Name]
[Your Title/Role]
FOXG1 Research Foundation
[Your Contact Information]

Share more about our progress, efforts, and goal with this message from our CEO, Nasha Fitter.

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 lean 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 drive FOXG1 research into clinical trials, and that means we are getting closer to a cure.  If you want to learn more, here is FOXG1 Research Foundation’s Path to a Cure: https://foxg1research.org/curefoxg1

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!

FAQs about Peer-to-Peer Fundrasing

  • Just like Facebook birthday fundraisers, we launch new campaigns to reach specific goals. The 2023 Race to $200K is our end-of-year campaign to help us meet our goals along the way to clinical trials and then a cure!Each campaign is an incremental step along the road to a cure.We will keep the ONGOING (historic) TEAMS active so that you can continue to fundraise any time. You can continue to update your historic teams here.We will also keep the previous campaigns visible on this page so you can see your supporters along the way!

  • No, with the platform we use, there is no way to move or merge Fundraising Teams.

  • Yes, go to your last fundraising team page. Inside each team member's contact profile, there is a list of Causes. These are all of the Peer to Peer fundraisers that you have run in the past. Identify the one that you would like to have a list of donors and contact information. Then scroll down to the Downloads section, and click on "(name of cause/P2P fundraiser name) Team Giving." This will allow you to download your list of donors as a PDF or CSV (spreadsheet) Watch the video in the "Thank your donors" section above for visual details.

  • The URL of a team page will be automatically generated based on the name the team leader applies when creating it. This cannot currently be customized after it has been created.If you have a team page URL that will not work, you would need to delete that team and recreate it to reset the URL.

  • Yes! If you have donors who would like to mail a check or give you cash for your campaign, please contact: info@foxg1research.org

  • Yes, when donors give via a crowdfunding page, post-donation, they have an option to A) leave a note in support that will display in the recent donations ticker and B) make their gift anonymously. Making the gift anonymously means that the name is hidden on the ticker on the team page, but your FOXG1 will get the proper information for things like providing a tax receipt. If your donor decides to donate anonymously after the donation has been made, please contact: @foxg1research.org

  • The URL of a team page will be automatically generated based on the name the team leader applies when creating it. This cannot currently be customized after it has been created.If you have a team page URL that will not work, you would need to delete that team and recreate it to reset the URL.