What’s a BDSRA project, initiative, or cause you’re passionate about?
The Haley’s Heroes Foundation raised funds on Giving Tuesday to sponsor childcare at the 2025 BDSRA Annual Family Conference in Lincoln, Nebraska to help ensure it’ll come at no cost for Batten families. Whatever you’re passionate about, help raise funds for it until the end of 2024.
How to Get Your Community Involved
Fundraising Toolkit:
First, check your email and look for one from BDSRA with the full instructions. If you’re not on our email list, please sign up here and read the instructions below.
Thank you for taking time out of your already hectic schedule to support our annual fund. Our goal is aggressive because our work is critical. As Amy shared on social media, here is your toolkit!
1. Send a pre-written letter to your contacts.
Below you will find a message that you can copy and paste to email your contacts. OR you can send a PDF of the letter that you can download, print, and distribute to people you know. It has a QR code to make donating easy. You can access the PDF by clicking the image or copying this link: https://ow.ly/S5nS50Ub4na
You can also copy and paste the letter text below to send in an email:
Subject Line: My Support Network Needs Your Support
Body:
Dear colleagues, friends, neighbors, and family,
I am not a professional fundraiser. I know and love someone with Batten disease. Caring for a Batten patient is demanding in every possible way – physically, mentally, and emotionally. The BDSRA Foundation provides Batten families with critical support. The Foundation does what they cannot, and goes where they cannot.
There is currently no cure for Batten disease. To be clear, it is a terminal illness.
The BDSRA Foundation:
- Provides vital information about Batten disease
- Pursues and provides the funding required for research
- Advocates for Batten families at the national level
- Engages siblings in healing and inclusive ways
- Identifies clinical Centers of Excellence across the country, who have set standards of care for individuals living with Batten disease, participate in research, and provide the best treatments available
The BDSRA Foundation has created a community of caring that, frankly, sustains so many in the global Batten “family.”
Right now these people who support affected families need your support. The Foundation’s annual appeal is going on now through the end of the year. You would be amazed at how much they do with every dollar.
Please give using this link: https://web.charityengine.net/Default.aspx?tsid=31711
If you cannot give, please share this with someone you know who can.
I urge you to take time to get to know more about Batten disease on their website at BDSRAfoundation.org. I know you’re busy. Thank you for reading my note and for considering supporting the BDSRA Foundation.
Warmly,
Personal email signature
2. Download and post this social media graphic on your social media pages!
You can access the graphic by clicking the image or copying this link: https://ow.ly/UrPx50Ub6hE. You may screenshot the image or press and hold the image and save it on your mobile device. If you’re using a computer, you may right-click on the image and save it to your computer.
We know that your network WANTS a way to support you and your family. Please let us know if you have any questions or need help participating in this project.
