Seize the Day!

We believe that the simple things like a smile, a shared experience, a new favorite toy, family activity, or other items that help a person to participate more fully in life’s great adventures are what make all the difference in a person’s quality of life. When a loved one has a significant medical condition, it can become difficult to pay for items or activities that are not deemed medically necessary, leaving these sources of “hope” and “adventure” out of reach. As Ethan’s Reason continues to raise awareness and funds to support research for a cure for Batten Disease, we also strive to support “time, hope, and adventure now,” for children and families who are still fighting this disease, and offer support to those who have lost their loved ones.

What We Do

Think of an adventure… maybe there is a concert, a sporting event, a theater, a restaurant, a water park, an amusement park, a national park, a museum, or other activity or event that you would like to experience or visit with your loved one with Batten Disease. Maybe there is a special toy or activity that would allow you to enjoy an experience together in the comfort of your home. Maybe it’s an aromatherapy toy, a state park sticker, art supplies, zoo passes, a special summer camp, sensory lights, a visit to the spa, or maybe even an in-home foot spa! Whatever your adventure, Ethan’s Reason would like to help you embrace this time together by relieving some of the cost burden that these types of activities tend to create. If you’re looking for ideas, we’d be glad to help!

Please be aware that we are not a wish-granting organization that can coordinate and fund the full cost of a “wish.” We are only able to provide some assistance with the purchasing, and/or grant funds towards the purchase. If you would like your child to receive a wish, we highly recommend that you contact the Make-A-Wish Foundation.

Let’s Embrace It!

Ready to seize the day? Get started by contacting us by either clicking on this Contact Us link and filling out the form, or by emailing Please provide the following:

1. Your name and the name(s) and age(s) of your loved one(s) with Batten Disease.
2. A verification through a blog, website, social media page, or CaringBridge (or similar). If you do not have any of these means of verification, you can confirm using a letter from another non-profit or physician.
3. The type of adventure you would like to experience, and why.
4. Contact information for the best way to respond and reach you.

Here are some key things to know about our process:

• Adventures are considered on a case-by-case basis. While we have limited resources at this time, and will likely only be able to assist you once per year, there is a possibility we may be able to assist you again within the same year depending on the cost.
• There are no age restrictions. Anyone is welcome to apply.

Partners in Rare Disease

Graphic of the outline of the state of minnesota in orange and "rare disease" in blue
rare disease logo with human hands in multiple colors
Minnesota Council of Nonprofits