It’s Giving Tuesday! Here’s How YOU Can Help BDSRA and Batten Disease Families!

Raise Funds for BDSRA in 2 Easy Steps!

What’s a BDSRA project, initiative, or cause you’re passionate about?

The Haley’s Heroes Foundation will raise funds today 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 TODAY and through the end of 2024.

2 Easy Steps to Raise Funds and Get Your Community Involved!

1. Send a pre-written letter to your contacts. Below is a message 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, and check out other ways you can give below.