Ethan's Reason is currently in the process of filing an application for non-profit status under section 501(c)(3) as a charitable organization in the state of Minnesota.
Seize the Day!
If you've read "Ethan's Story" then you know that we believe time is precious and should be embraced as much as possible. Life-limiting diseases, like Batten Disease, make us think about what is most important in life. 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
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!
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 with any type of NCL, or suspected NCL, is eligible.